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Fibromyalgia, Chronic Fatigue and Gluten Intolerance

Posted on November 6th, 2008 by Alison Read 210 Comments - Add Your Own »
fibromyalgia and chronic fatigue caused by gluten

The other day I was shopping in Whole Foods when a woman asked an employee where the wheat-free bread was. The employee had no idea so I offered to help. As I led the woman to the alternative bread section she told me that she didn’t feel well when she ate whole wheat, and tries to limit it by eating white bread or wheat-free breads like spelt. Then she told me that she has fibromyalgia.

I asked her if anyone suggested that her symptoms might be caused by gluten. No, she told me. She is on several different therapies, but no one ever said anything about gluten. She ended up passing on buying any gluten-free bread because it was too expensive. She is on disability. The whole situation saddened me, because it was clear that she was trying as best as she could given her financial situation and the information available to her.

We parted ways in the store after I showed her some more products and gave her some suggestions for eating gluten-free. I think she was too overwhelmed to accept any more of my help. We bumped into each other again in the bakery section, where she was searching for something to eat. I showed her the gluten-free options (all expensive) and she reached in a bin and grabbed a muffin. “You know that has wheat in it, right?” I thought maybe she was confused. “Well,” she said, “I have to eat something.” And so she will continue to eat the very thing that is making her sick, because she doesn’t really know any better and can’t afford to try a gluten-free diet.

After this encounter I wondered if a connection between fibromyalgia, chronic fatigue and gluten intolerance was well-known. I found that although people in forums and in their own personal websites report how much better they feel after cutting gluten out their diet, some actually being diagnosed with celiac disease after years of suffering with these other diagnoses, the main websites for fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) make no reference to the possibility that gluten could be the cause. Instead they list about 20 different treatment options, with no mention of a gluten-free diet.

The symptoms of fibromyalgia, gathered from several websites including the Mayo Clinic and Johns Hopkins include:

  • Body pain
  • Fatigue
  • Non-cardiac Chest Pain
  • Sleep Disturbance
  • Irritable Bowel Syndrome (Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea, acid reflux or gastroesophageal reflux disease (GERD
  • Depression
  • Anxiety
  • Chronic Headaches
  • Rhinitis
  • Depression
  • Dizziness or lightheadedness
  • Impaired coordination
  • Muscle Twitching
  • Restless Leg Syndrome
  • Numbness and Tingling Sensations (Peripheral Neuropathy)
  • Brain Fog (Poor Concentration)
  • Morning Stiffness
  • Chemical Sensitivity
  • Myofascial Pain Syndrome
  • Skin Problems
  • Joint Disorder
  • Urinary Problems
  • Widespread Pain
  • Dysmenorrhea
  • Nausea
  • Memory Loss
  • Vision Problems
  • Weight Gain
  • Dry eyes and mouth

Almost every one of these symptoms has been associated to celiac disease or gluten intolerance, yet none of these websites mentions that people should be tested for celiac or try a gluten-free diet. One website says that people with fibromyalgia are at a greater risk of developing a number of other disorders, such as:

  • Fertility problems
  • Irritable Bowel Syndrome
  • Osteoporosis
  • Endometriosis
  • Carpal Tunnel Syndrome
  • Sjogren’s syndrome
  • Crohn’s disease
  • Multiple Sclerosis
  • Raynaud’s Phenomenon
  • Chronic Fatigue Syndrome
  • Anemia
  • Morton’s Neuroma
  • Seasonal Affective Disorder
  • GERD
  • Interstitial Cystitis
  • Yeast Infections
  • Bruxism
  • Low Cytokine Levels
  • Hypoglycemia

Again, almost every one of these conditions has been associated with celiac disease or gluten intolerance.

People with Chronic Fatigue Syndrome, another disorder with no known cause, report the following symptoms (according the CDC website):

  • cognitive dysfunction, including impaired memory or concentration
  • postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
  • unrefreshing sleep
  • joint pain (without redness or swelling)
  • persistent muscle pain
  • headaches of a new type or severity
  • tender cervical or axillary lymph nodes
  • sore throat
  • irritable bowel, abdominal pain, nausea, diarrhea or bloating
  • chills and night sweats
  • brain fog
  • chest pain
  • shortness of breath
  • chronic cough
  • visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
  • allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
  • difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
  • psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
  • jaw pain
  • weight loss or gain

Almost all of the above symptoms have been connected to gluten’s effects on the body. Compare to the list of symptoms related to celiac disease or gluten intolerance, and it is astonishing. Also astonishing is the fact that people diagnosed with Fibromyalgia or Chronic Fatigue aren’t immediately tested for celiac and, EVEN IF THE TEST IS NEGATIVE, put on a gluten-free diet.

I know someone with Chronic Fatigue Syndrome. She told me that she had already tried the gluten-free diet. Except that she had wheat sometimes. And that several of her 20+ medications that she took every day contained gluten. She continues to live in pain and on drugs (she is 38 years old).

Tell me, anyone out there who suffers from Fibromyalgia or Chronic Fatigue Syndrome… Have you been tested for celiac? Have you tried a 100% gluten-free diet for an extended amount of time?

Comments

  1. I have been diagnosed with fibromyalgia, although I also have elevated inflammation markers that cannot be explained. I have been mostly gluten-free for a year now, with more than a six-month stint at one point. I have also been tested for celiac with all of the blood tests available and come back negative. Being off wheat helps, particularly with my digestive issues, but does not affect the pain at all. I’ve had slightly more success limiting carbs in general, but more for energy than anything else.

  2. You may want to check out other food intolerances. SageLab.com does blood antibody testing from many different foods.

    Dr. Fabiano MD had Fibermylia himself and wanted to know why. By eliminating tomatoes from his diet he was able to eliminate his symptoms.

  3. Alison,
    I was living with body pain and all sorts of symptoms on those lists for a long time. Then diagnosed with Fibromyalgia 4 years ago. Being the type to research into health issues, I came across books and articles that listed my symptoms as a reaction to food allergies. That began the dawning of the light for me. I found out that Gluten Sensitivity is NOT an allergy, but rather a systemic reaction to Gluten. Wow. However, my journey has been a long one- not just because it took me several decades to put all the info together and arrive at the fact that I can’t eat Gluten, but because I then took 8 years to accept it! Not easy in our Wheat based culture!
    I had gone Gluten, Dairy, Corn and Potato (nightshades) free 8 years ago and ended up feeling FANTASTIC! But, then slowly I began reintroducing all those products back into my diet and just as slowly regressed back to feeling terrible. That’s when I got my diagnosis of Fibro.
    So, springtime this year, I had had enough and went Gluten Free again. All my body pain is gone! (except for the normal soreness following a change in my workout routine) I also have been using much nutritional support, esp. L-Glutamine powder to heal my stomach and intestinal walls, Quercitin with Bromelain and Vitamin C and Acidophilus.
    THANK YOU!! for this article.
    Now, how do we get this info out there?
    I am constantly getting on my “soap box” at the grocery store or out with friends and family. But, -and I understand this- people are unwilling to believe that food is the cause of their health issues. Food that has been touted to have Nutrients, Vitamins, Energy (and tastes so damn good)!!!! Our Dr’s and Hospitals are still completely brainwashed by big Pharma and years of skewed medical school training in nutrition! When I improved my Bone Scan results by being off Wheat and Dairy, both my Gyn and my Internist said the same thing! “oh you have to at least eat yogurt”! They had no ability to absorb what I had REALLY said! THAT BY CLEARING CERTAIN FOODS FROM MY DIET AND THUS HEALING MY INTESTINES OF THEIR DAMAGING EFFECTS, I HAD ACTUALLY GROWN BACK BONE!!!
    Yikes!

    Thank you again for this article- Well done!
    Ann

  4. Thank you for this article at least I know I am not the only one.

    My journey began in 2005, it hasn’t been long but it sure has felt like it. I remember vividly during the day I felt so tired and sore, I thought it was maybe related to adjusting to the elevation in Colorado after moving from Canada. Then month after month it didn’t go away and began to get worse. There were all kinds of symptoms that would show up, the first major symptom was numbness and tingling in my feet and hands throughout the day and night. I went to doctors and no one could find the problem. Not one of them asked me what I might be eating? Year after year pasted and I still never gave up that I could figure this all out. I was tested for MS, fibro, and other neuroligical disorders and thankfully everything came back negative. I tried all kinds of medication and found sometimes I felt worse. Well through a stroke of luck and pure smarts I figured out my first puzzle to my numbness…it turned out to be SOY. I was able to figure it out to be that since in Canada alot of processed foods use Canola oil and since having moved to the US that is when it started. Bingo I was so elated to finally figure this out. Now the next problem were my aches in my hips, I was able to figure out it was because of beefand nightshade veggies, so I got rid of those and my hip pain was gone! The final symptom took about 9 months to figure out but it finally clicked. I took out wheat and then eliminated my fatigue and muscle aches! Wow it has been a heck of a year to have finally figured out the huge puzzle, now I am excited to finally lose some weight and get back on track with my health. It’s critical to those reading this that you check your diet and read, read, read ingredients to see if you may have allergies or intolerances to foods. I have alot of food types to eliminate now but it means so much to have my life back!!

    I have to eliminate, soy (which is pretty near 90% of all processed foods out there), all red meat, tomatoes, cabbage, all products made with wheat, dairy, and some nuts.
    I go back to cooking the way my mother did for me when we were young, making everything from scratch. My peace of mind is so worth it!

  5. Arrgh!! Don’t you wish you could just force people to try? Just give it 30 days and see how you feel? What do they have to loose? I think that unconsciously people choose eating what they want over feeling healthy. So the very thing they think brings them comfort, brings them agony. It’s more expensive, true. I cannot imagine trying to make it work on disability. However, if I was on disability, I also wouldn’t buy a $2 muffin at Whole Foods. I’m such a crab.

  6. Hi there,

    I have a question both for you, Alison, and anyone else who might read this, about genetic links? I’m 23 – my father has fibro (so far as I know he hasn’t been tested for the other 2), and his sister my aunt was gradually diagnosed over a period of years with all three – CFS, celiacs, and fibro. My mother is also dealing with what may be Sjogrens, among other issues (which, as you’ve written, has been linked to these other disorders). I’m so young, and a poor grad student, and right now I’m just trying to eat as healthy as I can and go about my business (it has been suggested to me that I might be showing very early signs of a gluten intolerance, and I’m thinking of trying to strike it from my diet for a short period and see if it helps some of my own issues – though the cost, as pointed out, seems a little daunting to me) but I’m wondering whether any of you who have been diagnosed with one or more of these disorders have family members who have been similarly diagnosed? If there are real risks for me, as it is appearing there may be, at the very least I want to be aware of them. And does anyone know if there’s been research done as to whether any of these disorders are hereditary?

    I have been disturbed for some time over the compartmentalization of the medical field, and this seems to me the likeliest reason behind the lack of official recognition as to a link between these disorders. There have been enough problems over the last decade ensuring that CFS research dollars get spent responsibly, and ensuring that it get taken seriously as a disorder. Imagine now proposing further research treating these disorders as inter-related? The idea that so many of these disorders may be linked is also rather scary, I think, to a medical establishment that is divided into its various research and funding segments, each of which tends to have little contact with any other. It’s very important then that “patients” get together and start doing their own research, recognizing that some of this stuff is very unlikely to be all coincidence.

    So, hereditary? Thoughts?

  7. Hi Adrienne,
    One of the interesting things about celiac disease is that it is the only autoimmune disease with a known cause – gluten. There are many doctors and researchers that believe that perhaps gluten is the root of many autoimmune disorders. And it IS genetic.
    Is your father gluten-free? It sounds like he should be, especially if his sister has already been diagnosed with celiac.
    As for you, I would recommend that you eat gluten-free if it makes you feel better and to prevent further medical problems if it runs in your family. How to eat gluten-free on a budget… if you can’t afford the gluten-free specialty products, there is always rice, corn, potato, meat, cheese, vegetables, and fruit! Make your own gluten-free cookies or brownies from a mix (freeze whatever you can’t eat yourself.)
    If you need more help, please let me know!

  8. I don’t have fibro but I am gluten intolerant and sensitive to dairy and sugar. My son, who I am still breastfeeding, is also sensitive to dairy and soy products. So I basically stay away from gluten/dairy/soy/sugar. It can be challenging at first but once I got over the “withdrawal hump” with eliminating gluten, I actually didn’t crave it anymore.

    I think the hardest thing for people when they hear that they may not be able to eat gluten is that they are actually “addicted” to it to some degree. And in order to to go gluten-free, you have to be willing to walk through the withdrawal period. This can be very hard if someone doesn’t know that it will get much easier with time.

    Also, when you learn that there are SO many things GF people can eat, and learn a little bit about how to bake and prepare foods, it starts to feel like you’re not missing out anymore.

    There are so many things that food allergies/sensitivities can cause. I am saddened and angered by the fact that this knowledge is not common knowledge in the medical field and that people are not asked about their diet when they have these symptoms.

    For me personally, depression is one of my main symptoms when I eat gluten. This too is not common knowledge that food allergies can cause depression. When I finally put two and two together, I started feeling like a normal person again. But I was upset that after so many years I didn’t know this.

    I recently started providing gluten,dairy and soy free menu planners for people who can’t eat these foods. It is a weekly planner people can subscribe to. I am very happy to be able to provide a service that will help people eat foods free of main allergens. If anyone is interested, you can learn more about it at http://www.heartofcooking.com

    Thank you so much for posting this article. I hope it is one of many to help people start to realize that they have control over their health by figuring out if they have food allergies.

    sincerely,
    Sarah Schatz
    http://www.heartofcooking.com

  9. I have just been reading up on glutence intolerance as a few things I had read started me thinking that this might be the cause of my problems.

    I was diagnosed with transverse myelitis a year ago after my legs and feet went numb and tingly. I was tested for lots of things but everything was negative so I was diagnosed with transverse myelitis, an autoimmune condition causing inflammation of the spinal cord. I had MRIs of my brain and spine and a lumbar puncture, but there was no evidence of this inflammtion. My sypmtoms are just like MS but I am told it is not that. The numbness and tingling is almost gone but I have muscle aches and stiffness which means I have to walk with a stick. I decided to try a gluten free fiet, 2 days go and will keep it up for 2 to 3 months to see if there is any change.

    My grandmother died from bowel cancer, which I read can be linked to gluten intolerance. I also have excema, asthma and hypothyroidism.

    Ally

  10. Thank you for posting these insights. I suffered for 2 years with chronic localized back pain, general indications of fibromyalgia, and constant fatigue/depression before discovering the surprising link to delayed (IgG) food allergies. Wheat/gluten, dairy, and eggs were the most severe allergies, and I had no idea of the damage they were creating. By strictly avoiding these foods, my pain went away after 6 months, I lost 25 pounds, my fatigue/depression disappeared, and my skin is glowing! For the first time in my life I don’t have blemishes, bloating, and rarely get sick. Last month, I tested my husband and kids and they all have the SAME allergies. (www.usbiotek.com for tests) The kids also have allergy to soy and one has allergy to citrus, which complicates the diet. By keeping them off of these foods they have improved concentration in school and also rarely get sick. My father has chronic inflammation in joints and sinuses and has recently seen improvement by avoiding some foods. I believe there are many factors including hormones, cross-reactive airborne allergens and genetics in the development of food allergies and subsequent chronic illness.

    This journey motivated me start a business and website dedicated to tracking multiple aspects of our body and lifestyle for total health – http://www.chartmyself.com

    Thanks again and don’t stop promoting health awareness and dietary discipline.

    -Shari
    http://www.chartmyself.com

  11. I have been diagnosed with fibromyalgia. Three years ago, after gaining 30 pounds and the high blood pressure that went with it, I got off of Elavil and Zoloft. I found out I was gluten intolerate (through saliva tests) and got off of gluten products. I lost 35 pounds and feel so much better. I still have some pain but it is usually associated with weather changes, fatigue, or stress. I also found that the gluten intolerance was causing elevated levels of cortisol which in turn contributed to the sleep problems I’ve had for years. A product called Seriphos has helped keep the cortisol levels in check. I’ve been off of Seriphos for several months now and I’ve had a terrible flare up. I believe the cortisol is a key factor in the muscle pain and sleep problems associated with fibromyalgia. Why doesn’t the medical community know about these things?!!! It’s soooo frustrating!

  12. I have had TMJD and general Myofacial Pain Syndrome for over a year and just took the ELISA/ACT allergy test, which came back negative for wheat/gluten/dairy, etc. However, my medical nutritionist is still advocating a gluten and dairy free diet, saying that many people with chronic pain/autoimmune conditions have less pain/feel better eating gluten and dairy free. If I am not allergic then how could it be creating a pain response in my body? Does anyone understand this and if so can you explain it to me? I’ve been eating gluten-free for two and a half weeks and am just trying to decide whether and why I should continue. Thanks!

  13. So much great information in the comments! I really hope people are reading your stories and looking to diet as a possible answer. It really is too bad that doctors aren’t suggesting food intolerance but doling out prescriptions instead.

    Ally,
    Sounds like you have a lot of symptoms (and family history) related to gluten. Have you been tested for celiac? I would love to hear your progress with the gluten-free diet.

    Kim,
    Depending on what antibodies the test was looking for, you could be gluten intolerant and it wouldn’t show up on that test. I do believe you should still try the diet. There is still a lot that the medical community does not understand about how food can cause different types of reactions. One example in my own family is my nephew. He got 2 different types of tests for milk allergy and both were negative, but he reacts to milk in very obvious ways (physical symptoms like feeling cold, red cheeks, runny nose and cough, and also behavioral symptoms). If my sister had gone only by tests, and not by her own experience, she would be quite a miserable mother with a miserable child!

    Keep the comments coming… this is really helpful!

  14. Hi! I hope you don’t mind that I have a link to your site.
    I thought your advice for Halloween was just terrific and there are so many valuable pieces you’ve written here. So supportive and informative!
    We think about some of the same things. One of my best friends has fibromyalgia… When I see even a possibility, I have to make the suggestion!

    When people look back 50 or 75 years from now, do you suppose people will wonder – - – If there was even a question or any confusion, why didn’t they just do that simple test for everyone?
    Happy holidays!

  15. Hi. I have a 10 year old son. Since he was a baby he has always had very foul smelling, watery diarrhea. When he was a baby I noticed that he didn’t grow much after he was 3 months old. When he was 1 year, I finally found a doctor that would listen to me and tests confirmed that he had the bone age of a 3 month old. A pediatric endocrinologist diagnosed him as having a vitamin a and d deficiency and just told us to over compensate his diet. At 3 he was diagnosed as having ADHD but was unable to take medications for it as they all caused him to be a zombie. At 8 years old, he was still having very frequent accidents, so we were referred to a pediatric gastroenterologist. Blood work and scopes were done and he was diagnosed as having irritable bowel syndrome, which does run in our family. He recommended immodium. He had the screening test for celiac and a biopsy done when he had the scopes and the results were negative. During the last week, he’s been complaining of upset stomach, heart burn, and feeling like he wanted to vomit. I have been considering trying him on a diet that works well for those with IBS. A friend of mine told me that it sounds more like he has celiac disease than IBS. The IBS diet would be bad for a kid with celiac. At 10 years old he is getting embarrassed by his accidents. Could the tests have been wrong? Could he have been misdiagnosed with IBS? I really want him to be happy and healthy but I don’t know what to do or where to turn.

    My dad, aunt, grandmother, and myself have all been diagnosed with osteoarthritis, IBS and Fibromyalgia. My sister was also diagnosed with IBS but she passed away at 19 before she was diagnosed with anything else. Could all of this be caused by gluten? Now I’m really wondering.

  16. I’ve been searching through the tons of information online to try and figure out the connection between my physical, emotional and mental symptoms, and the one thing I keep coming back to is food intolerances. I was tested for food allergies which showed a mild allergic reaction to oat and corn, but nothing else. Then my doctor explains that just because I’m not allergic to it doesn’t mean I don’t have an intolerance for it. *sigh*
    So as I sit here contemplating an elimination diet, I reflect on the 60 pounds I’ve gained in the last year, the rosacea which is getting worse, the tiredness, lack of energy, irritability, hypersensitivity to touch, and general “not well” feeling… yeah, I can try it.
    Not sure what the heck I’ll eat trying to do a gluten-free, oat and corn free, and probably casein free diet (I have a son with Fragile X, and I’ve heard it might help him, too, to do a GFCF diet), but I’ll figure something out!
    Wish me luck… and good health.

  17. Wow.

    I think I’m in a backwards category. After years of being sick, I did the research, and asked my doctor to check me for celiac disease. I found out after that that my aunt had already been dx’d, and from there relative after relative found they had it, too, and have benefited from GF.

    When I went GF, and I mean STRICTLY GF (I also can’t eat rice or potatoes, or bananas) I started feeling better and dropped 30+ lbs, but then the pain issues came back in force, and brought their friends. At this point, eliminating other things from my diet isn’t helping at all (and “safe” foods are so darned expensive and limited, I feel like the lady in the store- well, I have to eat SOMETHING!), and the joint pain (with no swelling or redness) the constant migraines, excessive fatigue and hurting to the touch are getting to be quite debilitating, and I’m only 34. I feel 94. I’m already on a medication commonly prescribed for FM for something else, and it isn’t helping at all, except to ease depression.

    I am going to talk to my dr about fibro and tmj, but at this point, from all I’m reading, I don’t know how much help a dx will do for me.

  18. Hi there

    Thought I would also share my story with you all.

    Had a healthy childhood…. developed Vitiligo when I was 23, (autoimmune), At 34 I started to experience symptoms such as extreme brain fog, tiredness and so on. I knew something was not right, went to doctor, got blood tests, said I was ‘subclinical hypothyroid’(autoimune). Went to specialist who basically just said that I was not ‘that bad’ and that I did not need to go on any medication.

    My symptoms gradually got worse, and been up and down for 5 years now. I have had some success with a homeopath, and have had regular blood tests every 3-5 months to check my thyroid hormone levels.

    During this time, I have also had anemia off and on, and my earlier research told me that Vitiligo can can also be a result of a lack of folic acid and Vit B12 in your body, so I made sure I took suplements to cover this.

    Anyway….a week ago, I felt like I crashed again, VERY tired, pains in legs and so many other symptoms of being hypothyroid & anemic. I went to make an appointment to see my doctor and she was not available, so I had to see a new doctor in the surgery.

    Suprise suprise….after blood tests results came back, she told me I am gluten sensitive and to go on a strict gluten free diet and also aviod dairy for 3 months.

    This was a week ago….I am still shocked to learn that my Vitiligo and Hypothyroid symptoms could possibly have been caused or made worse though my DIET!!! Why is it that no doctor in the last 16 years, has ever suggested that wheat/gluten could be making me ill?

    I have now read the links between anemia, hypothyroidism, gluten intolerance and so on…..it blows me away. All I can say is that I am glad I now have this information, rather than waiting another 16 years and becoming more ill.

    So here I am….trying to now eat gluten free after one week….easy in some ways, but abit challenging at first!

    My father (now passed), actually had rheumatoid arthritis and then passed from cancer. I quiver to think that maybe he was gluten intolerant and was never diagnosed!

    Any good recipes out there? I have alot to learn.

    Karen

  19. I was diagnosed with Fibromyalgia last March. Soon after, I noticed that when I didn’t eat wheat products I felt much better. The doctor (I’ve since switched doctors) administered the blood test to test for Coeliac Disease, which came out negative. I continued to maintain a close to wheat free diet since then anyways because I felt better. Three days ago I was diagnosed with Coeliac Disease. While this doctor did not administer any test, she explained that since Fibromyalgia and Coeliac Disease are highly correlated, I have a family history of Coeliac Disease–which is genetic, and it alleviates my symptoms, I can be diagnosed with the disease. In addition, to test for Coeliac disease, you must consume gluten regularly for thirty days (hence why my original test came out negative). My doctor felt that it was unnecessary for me to go through that kind of pain for a diagnosis that would surely come out positive. I wish this kind of information was more accessible to people. As I said, my first doctor (and many others) dismissed my concerns out of hand.

  20. Like many others with CD, I grew up without any allergies and was considered to be very healthy. However, about ten years ago I started having nagging symptoms, including hives, eczema, sinus problems, and fatigue. As time passed other symptoms also arose…depression, neuropathy, joint pain, and finally hearing loss.

    For years I went to doctors to find relief for symtoms, especially the hives and depression. I was told that I had acne and dermatitis. I requested food allergy testing and was told it was impossible to do. I had reactions from my antidepressant, and was constantly taking OTC pain meds for body aches. This continued for ten years until approximately one year ago.

    My friend had watched my allergies spiral out of control. By December 2007, I had hives everywhere. The most painful were on my eyelids and in my vaginal area. When Angela saw this, she recommended I cleanse for 21 days using Martha’s Vineyard Detox. At first I thought she was out of her mind but by then I was desperate. I agreed to give it seven days and then would re-evaluate.

    During this time I was also given a yearly exam and my doctor noticed my HCT was 24. She recommended I start eating meat and was surprised when I told her I eat meat at most meals. When I talked about this information with friends, one asked if I’d been tested for CD.

    Back to the cleanse…after one week my skin problems were gone for the most part. I had no eczema on my back. Hives were healing up over all of my body, and I had more energy without caffeine and by consuming approximately 900 calories per day than I had in years. I decided to give it another week, and then ended up completing the cleanse. At the end of the 21 days, I had more energy than I knew what to do with. I was no longer taking OTC pain pills and gave up my antidepressant as well. My sinus problems were completely gone (I had previously had 2 surgeries for chronic sinusitis).

    After the cleanse, I decided to continue a dairy-free/gluten-free diet but added in most other foods. I noticed I continued to have sporadic problems with hives so I went to an ND for food allergy testing. I found that I was severely allergic to dairy products (casein and whey),and was moderately allergic to beef, sugar cane, peanuts and pecans, and wheat/gluten.

    At the same time my MD ran a celiac panel and then sent me to see a GI specialist who told me my tIGA lab was the highest he’d ever seen. An EGD revealed I had CD.

    Since that time I’ve been gluten free/dairy free. I absolutely love not taking meds, drinking pots of coffee to make it through the day, and having a great attitude. I even am no longer anemic. My last HCT was 37! I’m finally back, and I don’t miss wheat too much because of how sick it made me. True, the foods are more expensive, but when I think of how much I save on medication, coffee, and my overall quality of life I don’t blink an eye at the register.

    One issue I’m continuing to work on is my hearing loss. I now have steroid injections in my inner ear to help with the 55% hearing loss I suffered over a 3 year span. I bring this up because it is not discussed in forums very often, but my ENT doctor sees it fairly often.

  21. I will add my experiences, and I hope I can understand what to do.

    I quit nightshade (arthritis), dairy, soy, sugar, and am now treating a severe yeast overgrowth.

    I have Fms/CFS/Myofascial, Hypothyroid, TMJ, dry mouth, and a whole list of other stuff, including IBS since April 2008 that Is VERY painful. I don’t know what to do or what I can eat!!!!!

    I had a colonoscope, removed two polyps, sprayed a 10 cm area of infection with antibitiotics, “look elsewhere for pain”, and NO FOLLOWUP APPT. I couldn’t believe it.

    Now I am looking at a second opinion at Baylor in dallas.

    But meanwhile I don’t know what to eat. GF,SF,SF,DF,CF,yeastfree diet, what else is left? I am IBS-C. I don’t know what to EAT. I swear not to eat anything, but I get hungry. I am taking probiotics.

    I wish you could email me with advice. I’ll keep checking the board.

    Thanks
    Vicki from North Texas

  22. I think you are on the right track, Vicki, going for a second opinion at Baylor. In the meantime if you keep a diary of the foods that aggravate your symptoms the most and avoid those, that may help. I think it would also help to spend 20 minutes twice a day doing relaxation exercises in a quiet place. Spend part of it doing abdominal breathing and the rest on methodically relaxing your whole body, from your feet to your head. You may find that you feel better while you are waiting for your medical test results.

  23. Hi,
    I am really glad to find you all. I was diagnosed with fibromyalgia several years ago, but it seemed to get somewhat better on its own for quite a while. I also have restless legs syndrome and until recently had sleep apnea so these became my main concern. I thought maybe losing weight and getting rid of sleep apnea was a sign that I could really get healthy again. But now I have been aching more than I have in a long time and it has occurred to me that maybe I have been eating differently and that is the cause. I will try the elimination diet. I feel badly for ELS (12 -9) who did the elimination diet and is still in pain. Have any of you tried Sam-E or coq10 enzyme? I have used Sam-E for a long time, it usually helps my mood and my joints but not this time (much more pain). I heard about enzymes from my dad (he sent me an article about enzymes and fibro) so I got some today. I would be interested in what your Dr. recommends for you. I hope your pain is better. It is worth mentioning that my sister already has her family on a gluten free diet because she has a problem with it and so does her daughter who is autistic. Actually that is how my dad found the article about enzymes they are apparently beneficial for both autism and fibromyalgia. They did not specify coq10, I just wanted something familiar and available locally. Best wishes to everyone.

  24. Wow, such a wealth of information. I have had many nagging little problems over the last several years. I started developing Vitiligo about 12 years ago and have cronic itching. My fatigue is soooo bad & I have Arthritis and chronic muscle & joint pain. I now have allergies and Sinus problems that I never had as a child or young adult. I was diagnosed with IBS 4 years ago and have been trying to avoid things that have bothered me in the past. I have recently began having severe diarrhea and have lost control of my bowels far too many times in the last month. This coupled with my extremely overactive bladder have limited me from venturing beyond my “safety zone.”

    I have returned to the GI Dr. who initially diagnosed me with the IBS. She has ordered many lab tests & procedures which are in progress. Among the things she is checking me for are Celiac Disease and Lactose intolerance. I have called myself “Lactose sensitive” for many years. I know my father (deceased) had GT issues with various foods for many years, and my mom has recently told me of having GI symptoms very similar to mine over the last 4-5 years. I also have a sister diagnosed with Fibromyalgia and my grand-daughter has Lactose issues much like mine.

    I am glad I have been doing research as I have discovred that I must not go “Gluten free” prior to my bloodwork & procedures as it may alter my test results. I have also researched Vitiligo & discovered that diffuse Vitiligo is very frequently associated with other, more severe Auto-Immune disorders, I have been tested in the last couple years for Hashimoto’s and Rheumatoid with negative results. I have also learned that people with Vitiligo who maintain a GF diet begin to regain skin pigmentation (my Vitiligo covers 90% of my body). I am very curious to see what my test results show. Regardless of the results, I think a Gluten free & Lactose free diet are worth a shot for me.

    Lisa G.

  25. Thank you everyone for your comments. It really saddens me how much people have suffered from food intolerance without knowing it. I hope that those of you who made comments will return here and give an update.

    A note about vitiligo: I had it as a child, but it stopped spreading. I do believe it was connected to my celiac. My grandfather also had it and I think he suffered from celiac — he had major depression, a bit pot belly, and stomach problems.

    To Karen, whose father passed away:
    It is sad to think of those whose lives were cut short because no one knew about the effects of gluten. I have a friend whose father died in his 40s of stomach cancer… my friend has recently been diagnosed with celiac (only because he became aware of it through me, not from a doctor). It’s not hard to make the connection between him and his father. I believe my uncle’s life was cut short because of celiac disease also. This is why it is so important to me to continue raising awareness.

  26. I am going through a lot of health issues that we can’t seem to pin down right now while still dealing with other issues that we thought we had figured out but just seems like the band aids are peeling off :(

    My PA mentioned trying to go gluten free. I already am dairy free due to a severe intolerance. Reading all of this information and the personal stories just really seemed to get this to click for me.

    Wish me luck as I try to change my life!

  27. I have a similar story. I was diagnosed with Fibromyalgia at age 26 (10 years ago) and developed pretty severe myofascial knots, depression, anxiety — the whole list of symptoms. I finally figured out the gluten and dairy connection almost two years ago.

    I felt a LOT better but not perfect, so I decided to eliminate eggs, refined sugar, soy, alcohol, caffeine (even cut out decaf, which has trace amounts), MSG (!!!!! the worst offender in my book), chocolate, coconut and corn. Basically I eat meat, vegetables, rice and alternative grains like quinoa. It’s incredibly hard but I feel so much better! Probably 90 percent of my muscle knots have cleared up. My energy is so much better. Another epiphany came with the improved quality of my sleep and reduced brain fog and that detached ADD feeling. When I cheat with any of these foods, I really feel it the next day — and sometimes for days, depending on what I ate.

    I tested positive through Enterolab for two copies of the gene that predisposes for gluten intolerance, which means that I am likely to experience pronounced gluten intolerance. (My brother did, too, and he has suffered from mood-related and digestive issues his whole life.) It’s also the gene — DQ1 – that predisposes to the neurological effects of gluten. I had numbness and tingling, neuropathy, major headaches, a “buzzed” brain feeling, DEFINITE depression and anxiety the day after “cheating” with gluten — (even if I didn’t know that I had ingested it; I would feel terrible and go back to check labels and sure enough!).

    The former head of the San Francisco CFIDS group said that every single person she knew with a CFIDS-related diagnosis who had tested it with complete elimination and then challenge was gluten intolerant to some degree. Every single person!

    I called the national FM group and talked with a PhD on staff there to explain my experience, my conversations with others, and my Internet research. I asked what dietary studies had been done. She said, “none that I know of.” I suggested informal surveys of fibro people, maybe through a survey button on their site. She sounded skeptical of the diet connection and I can’t blame her. I was VERY skeptical for years — so much so, in fact, that I resisted the diet for probably 7 years, despite hearing people recommend it. I felt like, “hmmm – they must have something different than what I have” and ignored them. I took lots of drugs and not one helped past about 6 months.

    It took hearing the head of the CFIDS group say that every single person she knows stuff to shock me into trying it. I’m so glad I did. I’m off every single medication and I feel better than I have in years. It’s funny (or actually not so much) — my naturopath tells me that she encourages her patients to try GF/CF and they almost always resist. I guess it’s not so surprising, given that MDs receive about 20 hours of nutritional training in med school these days and we have been trained by the vast majority of them to discount dietary factors.

    But, you figure — if Celiac and diabetes can create such severe symptoms, why not other foods in other people?! It just makes sense that this is the tip of the iceberg, particularly since we have engineered and re-engineered our food so extensively and our bodies can’t possibly keep up in terms of evolution. Who knows what the mechanism is — it could be an immune response or pharmacological reaction that we have yet to discover, but no one can tell me that these foods are ok for me. I think of it like vastly differing side effects among people to drugs, many of which are derived from plants, just like gluten.

    Check out research by Dr. Maios Hadjivassiliou of the United Kingdom. Also, doctors in Italy, where Celiac disease is practically an epidemic today, are doing some interesting leading research on this.

    I’ve considered starting a survey or petition to the National Fibromyalgia Association just to see where it might lead and encourage people to look into the possible link.

    Thanks for this post and I look forward to reading more in the future.

  28. Hello! I am sooo desperate for help, please if you can help, email me. I have seen so many specialists and the only diagnosis that I’ve had is Chronic EBV virus, and ‘abnormal’ MRI of the head, and Fifromyalgia (because my symptoms have no explanation). I’m debilitated to the point that laying in bed nor walking help me anymore. I am on so many meds (and none seem to help). My daughter has a wheat allergy, so I’m thinking that I may also, but when I ask my primary MD to test me, she says it’s not necessary. Any thoughts?? Who do I go to? What kind of specialist? And what do I ask to be tested for??

  29. Dear CC,
    I have emailed you directly also:
    I will try to offer you some advice for your desperate situation.
    First, where do you live? You should try to see a doctor who is aware of celiac disease and its effects. I can try to help you find someone. You should be tested for celiac disease first. Depending on your medications, however, this test could be falsely negative. It could also be negative if you are gluten sensitive, but don’t have celiac disease, which is a specific condition of the intestine. But if you do test positive, you will have an immediate answer and the treatment is a gluten-free diet, including all medications.
    If you test negative, I believe you should try a gluten-free diet anyway. Gluten sensitivity, even without it being “celiac disease” can cause all the symptoms you are describing. What have you got to lose? You can get a lot of help with the diet from this website and other resources. Check your medications also for gluten. If you have any concerns about these medications, or about not taking them, please talk to your doctor. It is important to be 100% gluten-free.
    Let me know how else I can help.
    Good luck,
    Alison

  30. I was diagnosed with Celiac Disease in April 2004 through an endoscopy. I have been on a strict 100% Gluten Free diet ever since. I was diagnosed with fibro in 2006, and Rheumatoid Arthritis early 2007. I also have diabetes since 1995. As you can see I have several autoimmune diseases. Having been on a GF diet prior to the fibro, I can only say if there is a connection, I would not like to have the pain of someone NOT on a GF diet, because my pain was and is bad.
    Joan

  31. Really interesting reads on this site. I feel lucky that I’ve been able to deal with my d’xds of MS and Celiac (2006)as they occurred w/i 2 months of each other. The new d’xs are Fibromyalgia and Osteoarthritis. I’ve come back to the net for sites like these to find out about their connection to gluten. My conclusion since I’ve been GF since 2006 is that the gene that makes us susceptible to autoimmune disorders has a “cascading” effect.

    Being the non-scientist that I am…just a human observor…I’m starting to believe that after the 1st a/i diagnosis, others can follow at a quick clip. In fact, if I meet a newly diagnosed GI patient, I deliberately choose to NOT discuss my other problems…it’s too scary for someone who is already overwhelmed.

    And, I’ll go whole-hog here, I think this GI problem is a huge problem for certain populations in America. I’m from a very rural, isolated area of Eastern Kentucky. And, yes, our gene pool isn’t as diverse as it should be! Rugged Appalachians from years past, even now, tended to keep to their own communities and travel was seriously restricted. As such, this hardy group generally from Northern European populations, hasn’t had a significant DNA shift. We’re like a little incapsulated European community. I know there will be those who disagree…but, for we natives, we know it is true.

    So, my theory…a great deal of study could be made of this unique population which probably has a higher percentage of GI individuals than other places. Next theory…the problems associated with this area…shorter life span, high depression rates, toothlessness (due to calcium malabsorption??), and a high neurological illness rate could be associated with A LOT OF UNDIAGNOSED CELIACS, etc.

    Any thoughts?

  32. After figuring out on my own that I was Lactose intolerant, a couple of years later I began to have chronic stomach pain fatigue and diarrhea, also would feel dizzy about 10 to 15 min into or after a meal. I was down to a size 2 and had very dry skin and brittle dry hair, could hardly push a grocery cart at the store I was so weak…I went to a Gastro Doctor who did a colonoscopy with a biopsy and diagnosed me with what he said most resembled Crohn’s disease. He did not offer any food allergy testing or other blood work, only did the colonoscopy. He told me the medication he would put me on for Crohn’s would make me feel even worse so to come back when my symptoms got really bad. I would call him for medicine to stop the horrible stomach pains and cramps, and he would give me something that was an antispasmodic, the side effects were not worth the small diff. that it made, it would make my mouth dry and put me to sleep for a couple of hours. I Knew instinctivly that I did not have Crohn’s…no fevers and no blood in my stool ever. I was at the end of my rope and looked on the internet and just started eliminating foods from my diet…The first was gluten. It took 3 days and I was symptom free and getting my energy back…I think back to my prep for the colonoscopy and it occurs to me that during the time I only drank chicken broth, I felt so much better, I told the Doctor that before my test and he said it was because my stomach was “getting a rest”.
    I wish that Doctor knew the unnecessary pain his misdiagnosis caused and the quality of life with my family that was diminished. I know he would have done more tests if it was his daughter or wife with this problem. Where is the compassion and common sense with these doctors any more?? I think he did the one procedure that made him the most money END OF STORY Good Luck and be your own Advocate if some thing doesn’t make sense to you trust your own judgement….

  33. Joan and Kycabo,
    Have you considered other food intolerance in addition to gluten? From some of the comments above, and from my own knowledge and experience, people with celiac disease or gluten intolerance often have other sensitivities as well. Common ones are dairy, soy, corn and nightshade vegetables (potato, tomato, peppers, eggplant), but it can be anything.

    Kycabo,
    Interesting theory! I think you’re right that doctors should do a study of that population. I wonder… maybe it comes down to the diet of that region though — lots of gluten I assume!

    Lori,
    Wow. I’m sorry you had to go through that and the lack of awareness of some doctors is astounding. I’m so glad that you posted your story for others — you will be helping someone out there going through the same thing. Thank you!

  34. Alison thanks for the great post. It is tragic how unhealthy foods generally are the cheap ones and healthy ones are expensive. I have been gluten free for a few months now and noticing a difference in my IBS symptoms; I believe it is also alleviating my chronic fatigue. I am currently researching something called Central Sensitivity Syndrome, theorized by Dr. Muhammad Yunus, rheumatologist who helped to get fybromyalgia accepted as a medical disorder, a sensitivity of the central nervous system causing a number of disorders, including fibro, CFS, IBS, Migraine, among others, many of which I suffer from. We could engage in a chicken and egg discussion here, I’m sure, I certainly don’t know which came first, having a sensitive system generally, or being sensitive to gluten, but if staying off it helps, I’m not going to argue!

  35. Hi!

    I was diagnosed with Ankylosing Spondylitis (a form of arthritis affecting mainly the spine) about 8 years ago. I was told then that there are a number of “non-skeletal” complications associated with the disease, including IBS, fatigue, psoriasis, canker sores and others.

    In the last year, I have had menstrual irregularites (now on the pill to regulate), hypothyroidism (now on synthroid), anemia (on iron pills), and extreme abdominal bloating (no definitive answers yet).

    I’ve always suspected a sensitivity to either wheat or gluten and have followed a gluten-free diet for about 3 weeks. The bloating has disappeared (other than the odd “mistake”, where there were hidden gluten ingredients), the arthritis is subsiding, and I feel great!

    The research that I’ve done indicates that ALL of the problems I’ve been having can be explained by a gluten intolerance. I don’t believe I’m Celiac, but intolerant; I will be tested anyway.

    I had been under the impression that my arthritic condition was responsible for my other symptoms, but I now believe that the arthritis itself is just one symptom of a much larger problem: gluten!!!

    My mother and grandfather both had AS, which fits into the genetic component of gluten intolerance.

    As a hint for people who are trying to adhere to a gluten-free diet: I found that I missed it a lot less if I didn’t try to replace it with “wheat substititutes”. Trying to replace your morning muffin with a gluten- free variety is a road to disappointment. I found it much easier to switch to a delicious fruit smoothie and would add greens and carrots to it as well. I also found that many “ethnic” cuisines, such as Indian, Vietnamese, Japanese, you name it, use very little gluten if you make it yourself and is ridiculously delicious and easy to make. You won’t miss gluten a bit if you can be adventurous and don’t just try to modify a North American diet.

    Good luck to all, I think we’re all on the right track!

    Pam.

  36. I have been diagnosed with Celiac Disease for two years now with active symptoms for sixteen years.

    I was diagnosed with fibro six weeks ago. They put me on a meds and the body pains are gone.

    Right now I feel the best I have in six years.

    Carolyn

  37. hmmmm, I was diagnosed with fibro in 1996 and have eliminated MOST of my symptoms… and am writing about it… I definitely think there is a connection… for me, I found out that I had candida, and have at times successfully and other times unsuccessfully eliminated wheat from my diet. I definitely feel better when I do… I was told that rye was a good substitute, but I love pasta and rice pasta just does not taste great… nor does spelt. And I would love to learn more about the gluten free diet…

  38. Thank you for writing this article Alison. It deeply saddens me that this isn’t recommended to more people and even when it is some won’t try it because it seems overwhelming. I’ve been gluten-free for several years and am convinced my fibromyalgia was caused by years of untreated celiac disease.

  39. holy moley! I have a ton of those symptoms! That’s amazing! Hopefully after going GF that I can recover fully, most of those are begining to go away. I have only been GF for about a month.

  40. I have had this constellation of problems for some time now. I have been diagnosed with allergies to mold & penicillin, Fibromyalgia, Raynaud’s, Hypothyroidism, Autoimmune Hepatitis (now they are saying I don’t have it because the ANA returned to “normal”, depression, chronic fatigue, etc, etc,. I get a malar (butterfly-shaped rash on the face) rash every once in awhile.
    Here are some links with very useful information:
    http://www.medicalnewstoday.com/articles/146634.php
    Pilot Study Finds Inexpensive Drug Appears To Relieve Fibromyalgia It’s Low Dose Naltrexone, Stanford Study

    This EXTREMELY IMPORTANT brand new research details the huge extent of the genetic basis for Chronic Fatigue Syndrome:
    Gene Expression Subtypes in Patients with Chronic
    Fatigue Syndrome/Myalgic Encephalomyelitis
    1172 ● JID 2008:197 (15 April) ● Kerr et al.
    According to this study, there are around 7 subtypes of CFS, with differing constellations of genetic patterns, but the problems seem to be that in affected people, there are too many copies of genes coding for receptor sites of certain proteins. This study is the one we have all been looking for so that people will stop calling us “lazy”, or mentally deficient, or hypochondriacs, or whatever else they can think of to pin the blame on our personality when in fact they just couldn’t admit that they didn’t have the answers yet.

    I was able to reverse my ANA titre and get most symptoms to subside for a few years by following a strict anti-candida regimen from a huge book I read at Borders. Of course, a big part of an anti-candida diet is staying out of the cookie jar, minimizing gluten, and adjusting your pH. You don’t want to feed it!
    I personally know a former teacher who suddenly got a severe case of fibromyalgia from toxic mold in her classroom walls. The whole thing seems to be a reaction to the toxins produced by fungus and yeast….
    I believe that this is some type of infection/inflammation in the circulatory/lymphatic system that travels, causes constriction, pain, etc. because I can feel it doing so, and because once I had severe pain that increased no matter what (antiinflammatories, acupuncture Tx with some cortisone injections)and one day, I took a special antibiotic for the flu. Magically, within 24 hours, the shoulder pain disappeared, never to return for the next two years!

  41. The blood tests for gluten intolerance are completely useless. You can have gluten intolerance for over a decade and still test negative. I had a gluten blood test and it showed either negative or borderline. However, I had a STOOL TEST through Entero Lab (http://www.enterolab.com/Home.htm) which showed gluten sensitivity. The reason that this is much more accurate is that the gluten antibodies are created in the digestive tract and don’t necessarily get into the bloodstream. I also had the gene test (you take a swab sample from the mouth), which showed that I have inherited a one gene which predisposes me to celiac disease and another which just predisposes me to gluten sensitivity. That means both my parents have a least one gluten sensitivity gene. While I do not have fibromyalgia, my sister does, and I think she probably has inherited a predisposition to it as well.

  42. i have 3 children with celiac disease. we joined a celiac study done through the university of california, irvine, and we were all tested genetically–at no cost! my husband and myself and 8 of my 9 children all carry one of the main celiac genes. for whatever reason, the disease has only activated in 3 of my girls—my identical twins and my daughter that is just younger than them. the lady over the study told me that they did not accept anyone in the study that had been diagnosed by enterolab. i know from talking to alot of people that if you test through enterolab you are almost guaranteed to be told that you are gluten intolerant because he claims there are so many genes that are gluten intolerant genes you are almost guaranteed to have one of them. he also has never published any of his work—although he has been saying for years that he is going to publish. i would be wary of any test results that come from enterolab. that is not to say that there are not people out there that are gluten intolerant without being celiac. i have fibromyalgia and have been considering going totally gluten free to see if it would help my pain. i would really only have to change what i snack on since all of our meals are already cooked gluten free. i’d love it if going gluten free would eliminate my pain, but i think i have more than that going on since i have recently been diagnosed with an adrenal insufficiency by an endocrinologist. i also have what she considers subclinical hypothyroidism.

  43. I have been fighting chronic fatigue for years, and also have been diagnosed with irritible bowel syndrome. Mainly I never seem to feel rested, no matter whether I get a good night’s sleep or not (but it seems I rarely do for one reason or another). Always feeling groggy and foggy headed. Recently I tried cutting out gluten from my diet. (I tested negative for gluten intolerance/celiac but my doctor told me that 30 to 40% of the time the test is wrong.) It’s been a little over two weeks and it doesn’t seem to have helped. Should I keep on it, should I try going on an anti-candida diet on top of the no-gluten diet, or what? I’m also thinking about going to a homeopathic doctor. I’d like to get to the bottom of this after all these years.

  44. Chris,
    Hypothyroidism has been linked to celiac disease in published research (you can do a search).

    Jay,
    Are you 100% gluten-free? Most people starting a gluten-free diet make mistakes in the beginning and even if you haven’t, 2 weeks is still a short time after your body has been suffering for years. For some people it can happen that fast, but it can take a while for others. There is the possibility that you have other food intolerance in addition to gluten. I would say give it some time, make sure that you are strictly gluten-free and then reevaluate to see if you should try cutting something else out of your diet. Dairy is a common intolerance in people who are gluten intolerant.

  45. Hello everyone,
    I’m trying to figure this gf eating thing…I have fibro and osteoarthritis I have started eating gf but I’m still so lost will someone help me?

    Thanks for your help,

    Melissa

  46. Melissa,
    You can find a gluten-free guide and other articles about eating gluten-free here:
    http://www.surefoodsliving.com/celiac-disease/

  47. I had horrible health problems check all the boxes for fibro and suffered for years. I say many doctors and received a diagnosis of fibro. I took muscle relaxer and a vitamin regime and felt a bit more functional, but no where near normal. One activity a day with my son took all the energy I had for the day. I went gf and felt better in a matter of days. I started dropping weight ( I looked puffy all the time), the dark circles under my eyes diminished, my hair and nails are growing, I heal better, i have not gotten sick, ibs is gone, bloated abdomen no more. I could not believe it. After 1 1/2 weeks I stopped take all my pills and felt better every day. After 3 1/2 months I am still improving every day. I mowed my lawn, went running, chase my son all these things I haven’t done in years. I fully believe I never had fibro but rather gluten intolerant or celiac. When I have tested this by eating gluten on purpose I either vomit or have to spend the day in the bathroom and I get flushed, sweat, and my abdomen swells about 2 inches.

    I cannot believe how this has changed my life. Also discovered my sons ongoing health problems responded to GF diet. He has the genetics for celiac and if give gluten swells, gets tired, and bathroom issues.

    I tried it because I had nothing to lose and there are no side effects. For me in 2-3 days I saw a different/felt and by 1 week there was no looking back for me.

    Good luck!

  48. Hi;
    I have had chronic fatigue for almost 10 years and have tried a completely gluten-free twice for over 6 months each time. The first time I thought it might have helped, but the second time it definitely didn’t. I have been tested for celiac disease both through blood tests (3 times)and biopsies (2 times) and all were negative. I also had the genetic test which concluded my genotype was prone to non-celiac gluten intolerance. I have a few comments. First, our bodies and symptoms change all of the time. If someone claims to feel better after trying a certain diet, that does not mean the diet caused the change. Whatever works. By all means try going gluten free and see how you feel (better yet, get tested for celiac before going gluten free), but just because there are a lot of people concluding that going gluten free has helped their fatigue and will help yours, that doesn’t mean either is true–remember the placebo effect is a proven phenomenon, and non-celiac gluten intolerance is not. I’m not trying to burst any bubbles–there are a lot of cases of undiagnosed celiac disease and anybody with chronic fatigue should look into that fully…and maybe someday there will be proof of non-celiac gluten intolerance. But there are a lot of other avenues to pursue if you are not feeling well, so don’t let yourself get lead into a dead end.

  49. Years ago I was diagnosed with chronic fatigue, then 6 years ago after open heart surgery I was diagnosed with fibromyalgia, myofascial pain, and severe depression just to list a few of my problems. About a month ago I was ready to end my life. I went to a Dr. out of my health care plan and finally got some answers, instead of drugs to cover up the symptoms. She did blood, saliva, and urine tests and found out that I am gluten intolerant, I have candida, an enlarged thyroid, adrenal problems, and estrogen dominance. She thinks that most of my health problems are because of the gluten. I have been on a gluten free diet for about 4 weeks and cannot believe the difference in how I feel. She also has me taking magnesium, progesterone, B12, iodine, and natural supplements. After reading about gluten intolerance I truly believe MANY, MANY people are really suffering from this, not fibromyalgia or chronic fatigue.

  50. I was diagnosed with Celiac two years ago. Before making the connection between CD and chronic fatigue, pain, etc., I visited the doctor every few months trying to figure out what was wrong with me. They knew I had Celiac, but they continued to test me. Finally, they categorized my other symptoms as Fibromyalgia or symptoms of mild depression. I kept telling them that I wasn’t depressed. Other than the fact that I have Celiac combined with cycles of extreme pain and fatigue, my life is great. After doing some research of my own, I’m convinced that these symptoms are directly related to Celiac. There’s no need to go to the doctor because they can’t really do anything, and usually, they aren’t current on the latest Celiac info. So, for now, I live my life knowing that my symptoms will run in cycles. I always know when it is about to start, and the symptoms usually last a week to a month. Then, I may be fine for 2-3 months. There is definitely a connection!

  51. This is my first week gf and I already feel better. I have experienced bloating, blurred vision, fatigue,an irritating vocal tic (which started about 4 years ago) dizziness, numbness of toes, etc, etc, etc. Thank God for the internet which led me to wondering about gluten. My regular morning meal for several years was an 8 grain bagel.
    My doctor did the blood work and I was also depleted for Vit D. She put me on 50,000 IU per day for a week and then once a week for 8 weeks. I am now on just a daily dose of 6oomg plus calcium and my opthomologist has recommended I-Caps twice daily. Between the gluten free regime and the vitamins I finally see improvement.

    I have read every comment on this site and thank you all.

  52. I am an info/research junkie and it just ROCKS MY MIND to read the CF symptoms parallel that of gluten issues- I landed here through your “plug” (go girl) from the amazon review you did on EH’s “G-free diet” book.

    I could write my own book here, I’m so excited and glad to have found your website- between my MD (diagnosed me w/ CFS) and my East/West “Voo-Doo” doc connecting a life history of gastro ailments, I just began going GF 10 days ago! -per Celiac Disease concerns-

    My heart goes out to the above commenter, CC. I also have the chronic EBV (mono) for the SECOND time in my life. It’s been 14 weeks now of CC’s exact symptoms…and I’m on a discovery kick! As a wife and mom of four (under 9 yrs of age) who now depends on full time help, I am desperate for good health. (Formerly active, independent and energetic)

    For the first 12 weeks, I couldn’t handle AT ALL TV, music, or the computer screen, and wasn’t able to drive.
    My eyes were blurred, and loud noises instantly caused horrendous migraines. Light is still a problem for me, and motion from TV and driving still make me VERY ill. It’s so awkward, I feel like my body, strength, and everything but spirit, has been kidnapped. -And I’m waiting, along with family and dear friends, to “come back”.

    I used to chase my kids up the stairs, and now I crawl with them…it’s been a rough journey-

    The worst was at 6 weeks when I was wheelchair bound and carried to the bathroom if not laid up in bed- and this was on our local family vacation I refused to stay home from~

    I’ve had a mystery digestive issue since 12 months young (I’m 31 now). I had an endno/colon exactly one year ago this month, to which a stripped stomach lining was the only thing found. (Never mind I just found out last week they didn’t check for celiac- thanks. Catch the sarcasm?)

    And as my oldest son has had GERD since birth (9 yrs later, he’s having an endo this month which will include Celiac biopsy), my other son with eczema, and my mom with auto-immune diseases such as Sjogrens, etc, it’s a no-brainer food is a culprit here.

    I read the comment from Lee just a few up, and while I can appreciate that insight and caution, I must defend that ANY action taken to calm down inflammation in the system is necessary when suffering.

    I am very excited about going GF, and will be a frequent (if not daily) visitor to this website. I totally support the connection between Fibro/CFS and gluten and will do what I can to help and support you and those who come my way that need this info- starting with my own family (per their diagnosis)

    I’d love to stamp my personal case of “Mystery Diagnosis” SOLVED, but the journey continues, pursuing answers and solutions…So much of what you have done here and comments (so familiar) is a blessing, thank you for your time and efforts and insight to this discovery!

    ps- a few things I’ve learned in a short time you probably already know of, I just haven’t explored your whole site yet:
    (So I don’t mean to be annoying, this is all so new to me, so maybe to someone reading this as well?)

    * CFS and Fibro are diagnosed mostly among women of Western Culture (USA)
    -no known cause-

    * When they do the endo for my son, they will take 8 samples as Celiac isn’t found easily.
    -nor is it found in blood tests easily-

    * Celiac is in the DNA- so it’s hereditary

    *Auto-immune issues are COMPLICATED, and finding the right doctor(s) to be your advocate, and keeping your dentist- yes dentist, informed, is important!

    *Rule out sleep apnea- do you snore and does your partner hear you stop breathing at night? Yes? Look into it then!

    Ok, off my box now “) Good luck!

  53. Anna,
    Thanks for your comment — I am so glad you have found the website helpful and I hope you will post again about your and your family’s results/progress! I hope you all feel better soon (and I hope gluten is the cause of all the problems!!). GOOD LUCK!

  54. Hey Alison, thanks!

    On my 4th week g-free and besides the unintentional screw-up moments (which I pay for so severely) I am seeing an AMAZING difference! Hubby and nanny both noticed a significant change by the start of week 3, I’m just now feeling/noticing it myself.

    My inflammatory gut has decreased so significantly I am amazed. I have more stamina- and so although I move like a turtle, I have perseverance now! -and no longer waddle as the mistaken “pregnant lady”. Yeah, that’s fun “( -and I’m petite.

    Our son got ill with a respiratory virus days before his endoscopy, and due to too much crackle (minor fluid) in his left lung, his procedure was re-scheduled for the 20th of October. (coming up!)

    I went to our local Walmart Superstore to find dinner-type foods that are family (g-free friendly) as I just can’t cook and clean to avoid cross-contamination in the timing necessary for all hungry mouths. I went isle by isle through this new trendy place, I know, Walmart people, but hang with me on this one-

    After 2 hours of reading ingredients, getting frustrated (at times) and almost cursing aloud, I turned down one section and ALAS! There’s an entire dedicated GLUTEN-FREE section! I took a picture, called my friend, and caressed each package (cookies, pasta, chocolates, even lemon wafers, pretzels, and a Tapioca loaf!) as my jaw hung to the floor. IT WAS HEAVEN!

    We have good health food stores around here ($$ BTW), but we’re on a budget with 4 kids and packing 3 lunches a day- So who’da thunk it?? WALMART?! Now we all eat happily for less. Even their meats are fresh and natural.

    Ok- I gotta ask. How serious is “cross contamination”?
    i.e. a friend put meatballs (and another put croutons) in an otherwise safe meal. I even checked ingredients for the red sauce, and the salad had no dressing! I picked around it all but still got sick- normal?

    AND PLEASE, does gluten-free mean cutting out “natural flavors/flavoring”? I assumed artificial flavor is already a “no-no”, but need major clarification. Please help! -It’s adds a lot back to my “safe-list” if so, and if not, then I’ll deal “)

    There’s a lot of info out there, and it doesn’t always match up- THANKS!
    I learned Butterfinger was g-free, and so are most Dairy Queen Blizzards, but when I read the label of a Butterfinger bar, it reads “less than 1% whey” and so I pass. Am I too hardcore?

    Please contact me privately if necessary.

    I’ve already made my friends try g-free food, and have begun my own g-free family friendly recipes.

    A few of my friends seem prime suspects for gluten-intolerance, but both are carb-queens and can’t fathom the idea of giving up a cupcake if presented with it. I realize in talking with them that I have a serious issue, as you couldn’t PAY ME or BRIBE ME under ANY circumstance to “give up” foods that make me suffer. I happily relinquish the culprits and wave my white flag with pride “)

    Going gluten-free and recognizing that my CFS is relieved to an obvious degree due to my diet is the best thing since, hmmm, not sliced bread- maybe those amazing Glutino brand pretzels?? (he he)

    I am not “CURED” of my ailments. I get weaker as the day progresses- but the fact I’m not collapsing, and have reflexes back, is truly amazing.

    When the moment I drove my kids to their neighborhood school (2 days ago) and my 4 yr old said, “You’re sickness is going away, mommy?” and his 3 yr old sister chimed in, “Yeah, you’re head no hurt?” tells me there is HOPE for this chapter in my life.

    I realize the true time-line is 6 weeks of no mess-ups going g-free. (It takes that long for the body to flush out the bad and handle processing the good and using the proteins and nourishment to heal the body) I can’t WAIT to see how much stronger I will be when that time comes!

    Please be in touch- “) Many thanks again for your insight and problem solving skills. No one takes lightly a life change like this- but I am so serious about getting better, and so tired of suffering, I can’t help but get EXCITED and disciplined for the sake of getting a large slice of my “pie/life” back.

    Until again, and thanks for your concern for my son- I will update you when we find answers for him, as well~

    Sincerely,
    anna

  55. Wowee Anna! I’m so happy that you are already seeing progress! Sounds like you have embraced the diet with a positive attitude and also with determination. Let’s see if I can answer some of your questions…

    Cross-contamination is a real concern and you could have gotten sick due to it. Everyone is different — some people react very strongly to cross-contamination, others not at all.

    Whey is dairy, not gluten. And Butterfinger Bars are gluten-free (except for Butterfinger Crisp)!

    Natural or Artificial Flavors could contain gluten. If it were derived from wheat, it would have to say “wheat” on the label. If it were derived from barley, it does not have to be declared so on the label. However, according to the book Gluten-Free Diet, A Comprehensive Resource Guide (2006) by Shelley Case, it is almost always declared as “barley malt extract” or “barley malt flavoring” and for this reason, natural and artificial flavorings do not have to be restricted in the gluten-free diet.
    You still must keep us posted! I love to hear this stuff! :)

  56. I have a question about delayed reactions.

    Some background: I was diagnosed with IBS about 15 years ago, and about two years ago I started having symptoms of fibromyalgia and chronic fatigue, though I haven’t been diagnosed by a doctor as having them. I’ve had an array of symptoms over the years that doctors have never been able to help me with (your blood test is normal — you’re fine!), so I guess I’ve become cynical and decided that my problems were my own to overcome.

    Anyway, in June I began eating GF/CF, and the improvement in my overall health was remarkable. I felt like I had my life back. The pain and IBS symptoms cleared within 2 weeks.

    Unfortunately, recently I’ve slipped up a bit. A little over a week ago I ate some bread, and felt fine until 2-3 days later, when I started having the familiar ache in my back and shoulders. Then, about 3 days ago I foolishly ate bread again. For two days I didn’t feel too bad, but today the pain has returned.

    Have others experienced this delayed reaction? Or should I be looking for other causes? I feel OK the day I eat the bread and the day after, so I’m confused.

    Thanks

  57. Christine- I just checked in to see if Alison replied to me- and THANKS girl!-(Alison) I WILL be in touch- I REALLY appreciate your thoroughness…just got my delivery from triumphdining.com
    http://www.triumphdining.com/products/gluten-free-and-celiac-diet-survival-kit
    (can I plug? -No offense, I’m so new to all this)
    and felt like a FOOL realizing WHEY is not gluten-related-DUH!

    I need to put your website as an icon on my iPhone, seriously! As you are a LIVE person, able, experienced, and THOROUGH. I couldn’t WAIT to see your response on the “flavoring question”. I have already begun notes on it, to which I hope to get back to you soon on…

    ps- I already enjoyed PF Chang’s Gluten free menu on our weekly date night, and even educated my local Baskin Robbins on their gluten-free selections!

    I’m relieved about Butterfinger, as our local Dairy Queen (mostly GF) has been my staple as hunger has finally gained its presence back in my life!!!

    MY tummy growled the other day, and I nearly broadcasted that! I can’t believe the difference lately!!!

    ANYHOO CHRISTINE (forgive me, I can be rude, a writer by nature can be distracted in length, at times) FROM WHAT I KNOW AS A MOM and also fellow “IBS” sufferer-

    “Incubation” periods are 1-3 days- you can suffer the consequence of an exposure to anything between 1-3 days. Personally, I get it within 5 min-1 hour of food exposure-

    You could most definitely have a bit more tolerance, but still suffer the same just within days later- Do not be fooled- your body will let you know, it’s just a matter of how in-tune you choose to be with it!

    I have had digestive issues since birth. It’s my normal. So I have come to deal, and get focused on, other matters concerning my ongoing health problems.

    DO NOT ignore your gut. I have finally learned it’s THE KEY to your health! If you KNOW you are messing up, GOOD FOR YOU for admitting it! If you KNOW you suffer within day/s afterwards, well then HELLO, you have a solution!

    I noticed my 2 boys ALWAYS got sick on Tuesdays each week. I’d count back 3 days and BOOM, SUNDAY- CHURCH. PACKED NURSERY. And there you have it.

    Count back 3 DAYS, and as little as 5 min (for me) and usually you will know the culprit.

    Don’t give up! Stay strong and determined. Find GOOD substitutions. You are not alone, and we all have weak moments. For the sake of your health, remain strong in the constant battle for “food-discipline”! Your body and mind will thank you, though you may not hear/feel it always “)

    Sincerely, the “over-commenter” to this thread-
    Anna

  58. Anna,
    I am loving your comments! Keep ‘em coming!

    Christine,
    Yes to delayed food reactions. Absolutely. Anna is right on. That’s why it can be so difficult to figure out. Not only can they be delayed, but the reaction itself can last a while. I speak from personal experience, and from what others have told me about their own reactions.
    So… stick to your diet completely! If you are 100% sure you haven’t eaten any gluten or dairy and you have the pain, then you can rule it out. But even if you are having a little bit here and there, it could still be causing the pain.

  59. Thanks “)
    And before I begin my “rambliah”, follow this link to an amazingly well done article, fellow womens’ health sufferers~

    http://www.aolhealth.com/condition-center/chronic-pain/autoimmune-diseases-symptoms

    Good news for our son, his reflux disease continues to be his only ailment- that’s it. His allergy panel from biopsy came back negative for wheat, etc. (My heart goes out to you moms with kids that do have this experience).

    Gotta’ tell ya’- Our daughter just got reviewed this week by an ENT specialist
    (it’s been a health nightmare in this house)!
    She needs tubes, but the doctor also wants to get to the underlying issue of her problem, so will do a blood test to check for wheat, dairy, soy and egg allergies.

    After asking me if there are allergies that me or hubby suffer (Uh, yes) doc literally closed the door and promised to deny this statement: He said, “Watch these kids with their grains. For your son, where he reacts in his gut, and your daughter, in her ears, it might be that they have an intolerance to wheat as well. And the blood test for wheat may result in a false negative. So diet could possibly change everything.”

    NICE! HONESTY! CLARITY! Unbelievable. Closed door or not, that was a bit informative, dont’cha think?

    I digress: We enjoyed a great date night last week (me and hubbs) at PF Changs. (via triumph dining’s restaurant guide). It really was amazing. I felt full, sans the pain, so we went back last night, and well…

    Something got messed up as I got home, vomited, and my stomach suddenly popped out as if I had 3 months left of a pregnancy. Even my 7 yr old was like, “Whoa mom! Look at your belly!” Then he lifted his Pj’s and stuck his out to make me feel less of a freak for the moment!

    I called the manager today as I have had an extremely rough day. I explained how impressed I was with the service, how comfortable they made me feel, and how we even returned in hopes of a “repeat” experience.

    I also explained that I noticed my plate had their Logo, so I knew they took Gluten seriously. He (Eric) explained his own allergy issues, looked up our visit in their system, and apologized as I recalled each detail. (Even the fact the server almost confused our meals because “the coloring looked different from the usual g-free scallops”) Um HELLO, that was my clue and I didn’t even catch it. Instead I WOLFED down the most delicious tasting meal I’ve had in months, and I’m paying for it now.

    Eric encouraged us to come back, explaining their kitchen practices (we covered cross-contamination, the fryer, the surface, you name it, they have it together over there) Then he took down my address, as he is sending a most generous certificate to use upon visiting again. He even requested we call ahead so he knows we’re coming, and will have our table ready and would like to meet us in person (and spoil us even more, perhaps?)

    Eric also suggested I stick with the Singapore Street noodles like I did the first experience- Fine, but bummer, as those scallops were UNBELIEVABLE.

    Hats off to Chang’s and the response to my call! Seriously. I’m almost feeling better (not, but I hope to soon enough).

    In my former life (no, not a believer in that, but fine if you are) I was a food critic. My absolute favorite thing is eating out and discovering “the best” of things at various places.
    I never order the same thing twice unless I know its “the best” and there’s no comparison otherwise.

    Ha-rumph. I’ll have to let go a bit and stick with what is safe and force my children into ordering exotic things I wouldn’t make myself at home (that’s basically my rule). Vicarious living- some parents do it through sports, I’ll have to do it through food “)

    There’s four of them, odds are in my favor! (Well maybe of the two who aren’t visiting specialists like their mom) Ah, life.

    Until again!

  60. The statement in the original article that the woman “had” to eat “something,” implying that she “had” to eat baked products, is so easy to overlook. We just assume that baked products are an essential part of our western diet. That unquestioned assumption keeps people who need to give up gluten from even trying to.

    When I first self-diagnosed twenty years ago, these expensive gluten-free products weren’t available, plus I didn’t have money to buy them even if they were… So I just gave up baked goods. Granted, that’s a radical way to go, but there are a lot of delicious foods that aren’t baked. Fruit-based puddings made with potato starch for dessert, baked potatoes as a starch accompaniment for a meal. No more sandwiches, but cold cuts aren’t super healthy anyway. Yoghurt and fruit for breakfast instead of French toast.

    Yes, I was thrilled when gluten-free breads came on the market and I was able to taste bread again. But even nowadays, I eat bread and other types of baked goods (always gluten-free) maybe once or twice a week at most, so the bread stays in the freezer and lasts a good long time. It’s possible to live an affordable delicious gluten-free diet.

    I know I’m preaching to the choir. But I wish, I just wish that people who resist giving up baked goods would think for a moment about health. Nothing is more important except, maybe, love.

  61. Hi there

    I am from New Zealand and been doing a lot of web surfing via Google today, with the latest topic being “corn intolerance in relation to fibromyalgia”, and have been scribbling away into a school exercise book, as physical written participation keeps things in focus more. I have covered a fair swag of topics, relating to arthritis, IBS, and fibromaylagia – all linked up in amazing information.

    I have greatly enjoyed reading the responses to your initial article; can understand the case of the poor woman wondering what she can eat, and not being able to afford the expensive products that are gluten-free. Been there, doing that!

    Some of the first gluten free breads I have tasted seemed pretty yuk anyway. I would rather just skip breads altogether.

    I have been trying to live around fibro since Christmas, 2003. And last year, I discovered from a blood test that I have a wheat intolerance. That came with some expense attached to it, as I visited a lady specialist in CFS and Fibro at my local clinic. Unfortunately her charges don’t allow me to continue to visit her, but the blood test and discussions did help.

    There hadn’t been any thought to test me for a gluten intolerance by my personal physician, touting rather a drug to help relieve things. I am pretty much gluten free as much as I can realise it; but in accommodating this regime, I have probably tried other solutions that bring me to the conclusion other foods are also affecting a tendency to more arthritic pain in my hand plus my IBS. In compensation, I have no doubt indulged in more of some foods I felt were okay, than I should have.

    But I can go on and on. It is a pleasure to read in on all the blogs here, just by chance – as things happen for a purpose generally – of people’s ways of grappling with their problems and finding quite logical conclusions and positive results from going gluten-free. I was researching into corn, if it was a factor in fibromyalgia symptoms, as I have been trying corn rounds biscuits as a substitute for bread, with toppings.

    Thank you anyway, sorry to be meandering but the fingers get a bit word-happy with being able to type fast. Just a chance meeting with everyone here, and it is a journey I am still trying to get to grips with, my diet and its consequences on my fibro, and associated peculiarities. Certainly I have an enquiring mind, and on here, the world is your oyster. A lot of information is so enlightening, when a 15 minute doctor’s visit provides not much, just the ability to try and push a prescription over at times.

    Cheers and good luck to everyone from down under here, with spreading the word and alleviating folk from unnecessary pain and drugs and lack of advice.

  62. I struggled for years to get doctors to listen to me and to try and find help. I finally figured out, ON MY OWN, that I cannot have gluten. Call it an allergy, intolerance or sensitivity…I don’t care. I can’t have it. I have been GF for many years now and the symptoms I had at the time have gone away. Since then, I have developed new issues and, again, after years of trying to find someone to listen, I have been diagnosed with Fibromyalgia. I keep a GF kitchen so the chance for cross contamination is very, very low.

    I’m headed to a naturopath soon to try and find some help. Everything is worse in the cold weather and, well, I live in Colorado. Today it is 8 degrees outside and I can barely type this. I’ve had to stop several times.

    Thank you for posting things like this to draw attention to the commonalities and the connections that other people may miss.

  63. I was diagnosed with Celiac Disease at about age 25. After being on a strict gluten free diet for a year or two, I became vibrant again. I have remained on a strict gluten free diet ever since.

    At the age of 36 I became very ill again, but in a different way, and eventually was diagnosed with fibromyalgia and chronic fatigue syndrome. Again, I never went off the strict gluten free diet.

    From what I understand, any of these illnesses weaken

  64. After 7 years of severe fibro and CF (and ALL the DR’s meds to go with it) I went to a Fibro client for women and they put me on a gluten-free, sugar free, no artifical sweetner,diet also testing alleries to tomatoes, and dairy products. Gluten, and sugar affect my pain greatly!
    I was just wondering if anyone else was effected by sugar- within an hour of eating anything sweet I feel sluggish, and I have slight body aches. Just enough body ache that I don’t feel like doing anything.
    Thank you for this website, it has been a great encouragement to doing what I know is right for my health and my family. After all we are just trying to feel our best so we can take care of our families, living our lives like we did BEFORE we had “symptoms”.

  65. Five successful months of being gluten-free! No doubt, at times it still accidentally gets me (like when I realize 1.5 hrs later that my body is in “rejection-mode”. No details, I shall spare you “)

    Physically, I cannot attest to being any stronger or more vibrant, or much skinnier.

    I was diagnosed (FINALLY) this week with Fibromyalgia and Chronic Fatigue Syndrome. -and would love to connect with Kristine.

    I also thank Leia for commenting on sugar- I think I need to experiment with that. (I already ban artificial sweetener!)

    My journey is a long tale, so to make it short… Well, I am a researcher who must see “the big picture” from “all angles”… so this is as short as it gets:

    I’ve had 2 primary docs, 2 neurologists, 2 rheumatologists, a “voo-doo” doctor (God Bless him, he’s the one who discovered my gluten-intolerance) and countless opinions from friends and family.- Just these past 7 months.

    One of each (primary/neuro/rheumo) along the way has diagnosed and prescribed meds for fibro. The other primary, diagnosed me with CFS.

    I am finally (this week) “white-flagging” it, and surrendering to daily meds so that my quality of life can get somewhat restored. That’s it’s own “blog” someday…

    In the meantime, I can’t thank Alison enough for having this article posted, as it clearly has “come to fruition” for me. Unfortunately, from all angles. But what a great resource your site is!

    I can, however, sing praises to the fact that my gastrointestinal issues have finally been tamed from going gluten free! For the first time in my whole life! It’s an amazing thing to think that what I went through before was anything normal…(again, details spared for your sake)
    And to think that I just may have some control over the severity of my conditions, (just based on my diet,) gets me psyched! when the hard days roll around…

    So, my fellow “g-free-ers” I still need a little help.

    In my own (somewhat made up, somewhat researched) opinion, if I read on a food label “processed in a plant that also produces wheat,”.. etc I think I’m home-free for the most part?!

    My understanding is that there’s some kind of law requiring them to post that, and yet when a product switches to (i.e) peanut chocolate bar to non-peanut chocolate bar, they have to discard the “first run” from the switch-over anyways…

    So while there may be the SLIGHTEST trace, perhaps, for the most part, wouldn’t it be ok?

    Guess it all has to do with how sensitive the intolerance is? I’m pretty darn sensitive, and my body knows near-immediately when it’s got some gluten snuck in, so I’m real curious about what you all think, or what your experience/knowledge is…

    Thanks! Be in touch!
    ps- my son with the reflux is now only eating g-free cereal in the morning, (God Bless Chex for their new, various flavored line!), and it has cut the severity of his condition, and his med intake in HALF. Yay!

  66. Just as I read over, I want to clarify on a few things:

    I’ve only had a handful of accidents since going g-free- so I stamp it a “successful journey” thus far~

    I will remain g-free, ’till death do us part! -can’t imagine how much worse I’d be not having discovered it.

    My bloat decreased significantly, my slight double-chin took a hike! I just forgot! “)

    I am getting more curious about these “nightshades” (per reading comments of past…)

  67. I am in my early 60′s and am now GF after years of illness. Have had to have section of sm bowel removed (Crohn’s disease), have non-absorption of bile (major problems with this). When I was younger, I was told it was “growing pains”, “female problems”, “nervous stomach” etc. I was anemic, very skinny (malabsorption?), emotional, depressed, tired etc. Yet, no one mentioned gluten intolerance EVER! Someone I met at a farmer’s market noticed my bloated stomach, even though I was skinny and suggested I look at Celiac disease. Even though I have tested negative (even some of the Celiac specialists are questioning the validity of some of the “gold standard” tests now) my GI Dr. suggested I go GF because my small intestine is so damaged, but he doesn’t think I have Celiac disease! I don’t understand the reluctance of most American Drs. to understand this problem. I tried to get my Primary Care Dr to look into this and brought him brochures from GIG and others. He still thinks it’s called Sprue and is something children get! I ended up with 2 years of 12-15 hr bouts of violent vomiting. It started happening every 6 weeks and gradually increased frequency until it was every 3 or 4 days. I had fistulas and abscesses internally. Finally had a blood test for Crohn’s and my numbers were the highest my Dr had ever seen. But that still doesn’t explain the causes of all this. I am doing better being GF, but I think I am still getting some gluten by accident. I just realized after reading some of these posts that I should be checking into the ingredients in my prescriptions. I forgot about doing that – even though I did know that at one time.
    I have found in talking with others that Drs from Canada or Europe (or have been to medical school in Canada or Europe) are much more likely to look for a gluten intolerance/Celiac disease. Our medical schools are very backward when it comes to this.
    I have quite a few extended family members who have various maladies, but refuse to look into GF diets. One of them goes by the Blood Type diet – can’t wrap my brain around that one.
    This is an interesting site and I have found some beneficial posts/threads.
    Thanks

  68. I started a gluten free diet two days ago after hearing there may be some connection between gluten intolerence and fibromyalgia. I take several medications for fibro but still experience constant pain.
    My diagnosis was 7 years ago. The journey has been very sad since I was unable to work eventually ending a much loved teaching career.
    I will write back after several weeks to update this site on the effects gluten free eating has on my fibromyalgia. I am very excited that perhaps there is something that will help me!

  69. I’m catching up here after a while and want to respond to the more recent comments…

    Diana,
    I think you bring up a good point that people don’t have to eat the wheat replacements! And yes, it is affordable to eat a gluten-free diet if you are not buying all those specialty products!

    Anna,
    Glad you feel better – sometimes you don’t even really that you had a symptom until it goes away. And, unfortunately, we celiacs or gluten-intolerant people tend to have more than one sensitivity, so that is definitely something to look into.

    Yvonne,
    I hope you return here and let us know how it is going with you… it is really awful that docs want to prescribe meds than think about food.

    Kim and Kristin,
    I’m sorry you were diagnosed with fibro after being gluten-free. I would like to know if you find out the cause. (Is it another food in addition to gluten?)

    Leia,
    I have been hearing a LOT about people needing to cut out sugar lately.

    Maddy,
    A good source to check for gluten in medications is http://www.glutenfreedrugs.com.

    Debby,
    Please do check in here again and let us know how it is going.

  70. I found this amazing book in the library cooking section after my husbands 3 years of hives, my 3 yo daughter getting hives for a week solid, and my miscarriage, all of this after – allergy tests. This book had more info than my allergist could provide, he’d in fact told me I could eat anything I wanted. Anyway this book is very comprehensive and is a great guide to starting a gf life style.
    “The Gluten Connection: How gluten sensitivity may be sabotaging your health–and what you can do to take control NOW” Shari Lieberman, PhD, CNS, FACN
    I read the prolog and called my Mom, it covered her whole list of problems & includes FM, CFS, and many more!
    I’m happy to see the gf drugs list after my husband and I had bad reactions to amoxicillin.
    And I would venture to guess we have more of a problem w/sugar since the evil m’s crop of gmo sugar beets.

    Thanks for all you do, Amy

  71. Amy,
    I have heard of that book, but have not read it. Is your mom gluten-free now, and how is she doing?

  72. I have Hashimoto’s thyroiditis and fibromyalgia. I tested negative for celiac disease when worked up for other autoimmune diseases. I read a book called The Gluten Connection and decided to try gluten-free. Within 2 weeks of eliminating gluten, my irritable bowel symptoms cleared up, my muscular pain and “knots” were substantially reduced, and migraines also decreased. If I go off the diet (sometimes I can’t resist a soft pretzel!), I will notice the return of intestinal symptoms and migraine within 12 to 36 hours after ingesting the gluten. Although gluten-free breads and other products (pastas) are expensive, there are many naturally gluten free things like rice, potatoes, vegetables, fruits, meat, etc. that can be eaten.

    And, FYI, spelt is considered OK for those allergic to just wheat, but it DOES contain gluten and should NOT be eaten if you are gluten sensitive.

  73. Jennifer,
    So glad you feel better. Thanks for sharing your story! I hope it reaches many people.
    Alison

  74. I just interviewed a woman who was diagnosed with fibromyalgia and told there was no cure. She was given sleeping pills to help you sleep and told to exercise. She kept looking for an answer, and finally gave up gluten. Within two weeks she was pain free. The interview is here:

    http://joanneunleashed.com/2010/04/can-change-in-diet-cure-fibromyalgia-pain/

    I didn’t have fibromyalgia, but I had back pain for 30 years. I gave up grains when I went on a paleolithic diet. Within two months my back pain went away as well as ankle stiffness/pain, ataxia in my right eye, and my thyroid is healing. Wheat just ISN’T worth it.

  75. Alison,
    Love your site. How I wish you were in the midwest!

    Just found out in Februaury the whole family (all 10 of us!) have genetic gluten intolerence. I have been very weak, fatigued and in pain for over 12 years.

    I am now in a great deal of pain every waking moment, sleep very little, and am taking handfuls of pills (including lots of vicodin), for all my various illnesses. I have fibromyalgia, hypothyroidism, constant muscle spasms, constant headaches as well as 3-4/week migraines, chronic arthritis, the list is endless. I feel just like a commenter above – through my 30′s and now into my 40′s, I feel like I am over 90. Some days, I even have suicidal thoughts because there seems to be no relief from the pain.
    I have tried countless drs, specialists, chiropractors and all sorts of alternative med. practitioners – nearly all of them have dismissed me from their care, always as “one of the few” they cannot help. :(

    I am discouraged that I am no better, in fact, possibly worse after 2 months gf. I started the diet in January but made many mistakes that month as I continued to learn. I do have a double copy of the gene and suspect that I may be very sensitive. The rest of the family did not go gf until April 1, so there may have been some cross-contamination. I also have not yet checked all of the drugs that I dump into my body every day. But my daughter had bad GI symptoms and got better almost immediately. And most of the anecdotes on the internet involve rapid recovery. Why am I only getting worse?

    I am also menopausal which may be complicating everything. Honestly, I am so tired of this broken body!

    But I hurt so bad, am so tired and cannot think clearly. It is so difficult to figure out everything for myself.
    How can I know what other foods might be impeding my recovery, what supplements I might need or even when to expect improvement?

    I am deeply appreciative of your concern and help. I’d love to know your thoughts. Do you consult long-distance? Would that be helpful? Or do you know how I can find someone close to me? (I live in a very small farming town.)

    Thanks for your time!
    Wendy

  76. Wendy,
    This first thing I would do is check your medications by going to: http://www.glutenfreedrugs.com. It is a reliable source of information. If you have mostly cleaned out your body of gluten, but still take gluten in medications, it could definitely affect you.
    I would also suggest you get tested for vitamin and mineral deficiencies that you may have developed over time.
    Also, some people can actually have withdrawal symptoms after starting a gluten-free diet. And depending on your severity, the recovery can take time.
    I will email you for information about consultations. I hope you start to feel better soon!

  77. I was on disability and lived on $6,000 a month for a few years. I had to survive on $500 a month.

    I paid $325 in rent for a bedroom in a five person share. That left $43 a week for everything else.

    It sounds like she was doing the best she could.

  78. Alison,

    If my med is not listed on glutenfreedrugs, is it unsafe for me? How complete is the sie?

    Ava, my heart goes out to you. Gluten-free is much more expensive than your regular American junk or prepared foods. I’m having to now do gf for 9 people.
    Chronic pain and poor health is also expensive. But what a cruel irony it is when you get so bad you have to be on disability, then get worse because you simply cannot afford gf. Perhaps Alison was just hoping to help someone avoid that place.

  79. I’ve read the link between GI/CD and Fibromyalgia. Has anyone heard that GI/CD may be linked to polymyalgia rheumatica which is another autoimmune disease which effects the neck, shoulders and hips? I was diagnosed with polymyalgia July 2009 and been on steroid therapy with little relief. My ill feelings all started after a cervical neck fusion which I assumed may have triggered the polymyalgia. I also have lived with a lifetime of constipation (now relieved only by taking miralax), hypothyroidism now on synthroid, burning and tingling of my feet and mouth (always worse or better simultaneously). I recently found out that my two cousins on my Dad’s side have celiac disease. Since both our Dad’s are deceased, we have no way of knowing if they had CD also. I am scheduling an appt with my doctor and will request testing for GI & CD. I would appreciate any advise on any other tests that may be beneficial to try and pinpoint a cause for my symptoms.

  80. Linda,
    My mom was diagnosed with polymyalgia rheumatica before she was on a gluten-free diet. She too was on steroids and had a lot of pain in her shoulders and hips. After she went gluten-free, she was able to decrease her steroids and now no longer needs them at all. She suffers no more pain, but the pain did come back a few times that she accidentally had gluten. You can read her story: Lynn’s Story.
    Definitely get tested for celiac, and even if you test negative, you should try a gluten-free diet. Good luck to you!
    Alison

  81. Ava,
    I agree… she was doing the best she could. It is sad that so much money is spent on drugs, but none on helping people to eat well, even those with medically diagnosed food intolerance. I can’t imagine trying to be on a gluten-free diet while on disability. It is hard enough with a good income. So what’s going to happen — the poor will just become sicker.

  82. Wendy,
    Thanks — yes, I was hoping to help someone in need. But it was probably far beyond anything I could do. :(
    Regarding the medications listed on glutenfreedrugs.com… the list is well-maintained, but I think if it is NOT on the list, it doesn’t mean that it is not gluten-free. Perhaps it has not been researched. I would email glutenfreedrugs@gmail.com and ask about your specific medication if you don’t see it on the list. The site is maintained by a pharmacist who does not receive compensation.

  83. Regarding all of the above issues and diseases, I have found lots of answers in
    http://www.drvicery.com, http://www.fibromyalgiacure.com, http://www.supernutrient.com, along with The Two Edged Sword Diet:Beat the Yeast, Boot the Gluten
    The struggles of balancing daily pain management and various diagnosis given to me all through 50 years are huge and not easy. Celiac and Sjogren as basic starters have produced various other symptomatic or less symptomatic disease, all kind of borderline! Imagine how many tests and how many specialists ….thanks for the info shared, along the line of the agreeable complexes!! Our Search continues and listening to the body is the number 1 requirement.

  84. For people with inflamatory joint pain…..if you find that gluten doesn help, could be dairy. My chiropractor put me on an antiinflamatory diet for 28 days. I felt better and lost 10 pounds. However, its very restrictive and very hard to get used to. I have gotten off the diet and now feeling lousy again. Looks like its going to have to be a way of life for me. No processed foods, no dairy, no pork, no wheat, no gluten grains, no eggs, no tofu, no beef. Can have game meats though. Grass fed beef is ok, but that is hard to find.
    I find I dont like the gluten free breads because they are hard, heavy, crumble and are not sandwich friendly. There is a millet bread from http://www.traceystreats.com but I havent tried it yet….(been unemployed for going on two years now)

    Good luck !!!

  85. Alison,
    Just an update to my last blog on 4/19/10. Thank you for sending me your Mom’s, Lynn’s story regarding polymyalgia rheumatica. I have since had a celiac panel (blood work) done and it has come out negative. My doctor is not sure if the results are accurate since I am currently on a low dose of steroids. I have been on a gluten-free diet for 9 days but do not feel any relief. Does anyone know how long it will take before I will feel results if my problems are caused from gluten? I find Laura’s story informative regarding dairy as a possible cause for inflammation. A dairy-free diet will be my next trial if the gluten-free diet does not help. Thanks for this site, as well as your time, help and concern.
    Linda

  86. Linda,
    9 days seems a short time. I can’t remember how long it took my mom for the polymyalgia to go away. I will check with her and reply again. She also tested negative on celiac blood tests.

  87. Laura,
    I agree that dairy can be a cause of many symptoms also. Many people with gluten intolerance are also intolerant to dairy, so they often go hand in hand.

  88. So, so many of the comments here resonate for me. I didn’t have the full blown GI symptoms of gluten intolerance until well into adulthood and then even those symptoms were misdiagnosed, including by two gastroenterologists. There is very little awareness of the effects of gluten because there is no money in it for physicians and drug companies. The only treatment is to avoid gluten, so there is very little research, very little education and very little attention from the medical community. I don’t mean to sound cynical, but it’s actually more profitable to continue to misdiagnose people with other disorders for which there are meds. Another difficulty is that tests are fairly poor – a positive result does give you information, but a negative one does not mean much. And in order to accurately test, you must eat gluten for a few days beforehand – something I would never ever do intentionally at this point, especially to only be told that all I can do is avoid gluten. As a result I haven’t been tested for celiac although I’ve been (mis)diagnosed with IBD and Crohn’s, and even though I presented with a constellation of problems that should have screamed “Celiac Disease!” to anyone who had any information at all. I had the tiny skin blisters on the back of my shoulders and arms in my early twenties – my doctor couldn’t figure out what they were but gave me steroid cream for them. I had panic disorder, chronic diarrhea, cramping, nausea and vomiting, headaches, and have several food allergies that developed in adulthood. I am now gluten free and casein free for almost two years and all of these symptoms are resolved. I accidentally got glutened once recently and thought I had the flu until I called the restaurant and found that I had been given incorrect info.
    The only reason I figured any of this out was by doing an elimination diet, which I did for other reasons. For 8 weeks I ate only veggies, fruit, beans, nuts, seeds and a little brown rice. At the end of that time I began reintroducing foods…got to wheat and very clearly reacted adversely. Tried once again after another week, same thing, never deliberately tried gluten/gliadin foods again although there have been some mishaps. Through the same process, it was clear that dairy is a problem as well.
    I’ve gone from being the girl who would eat absolutely anything (fried crickets anyone? Sure, I’ll try one.) to being very strict about every single thing I take in. I’ve also gone from having constant nagging health issues which eventually became overwhelming as the reactions got stronger, to being completely healthy and problem-free.
    And to that woman who felt that it was too expensive to eat gluten free and she’s eating muffins because she “has to eat something” – I usually don’t even eat gluten free baked goods. It isn’t too expensive to eat fruit or veggies or a rice cake with some cashew or almond butter or a handful of nuts or pumpkin seeds. I lost 30lb when I went gluten free, my grocery bill actually went down, and absolutely anyone can do this. And I suspect, absolutely everyone should. It seems unlikely that any of us digest gluten well and the symptoms are often a lot more subtle than mine were.

  89. Thanks Jeannie,
    I agree with everything you have said! And good point that to be gluten-free doesn’t mean that you have to eat all the expensive specialty gluten-free foods — just stick to the basics.

  90. I was diagnosed approximatley 3 months ago as being gluten intolerant. I have been gluten free ever since. Since then, my intestinal problems are much better. Lately, I have been having some tingling in my hands and feet as well as in my head. I have read about the tingling in the extremeties but am wondering if anyone has experienced the head tingling. I am going to a neurologist on monday. I am going to ask for an Mri as I haven’t had one done. I also have a slight tremor to my hands and am wondering if anyone else has experienced this. Any advice is greatly appreciated!!

  91. Yes, fibromyaligia and celiac disease is hereditary. My dad has fibro and my mom has CD. I was diagnosed years ago with fibro, before my dad. In fact, I was the reason he was diagnosed. He also has Crohn’s disease. My mom was diagnosed three years ago with celiac. Two years ago I suffered from debilitating migraines which together with my fibro forced me on disability. At 35, that was certainly a blow to the self-esteem! After many doctors, who just seems to scratch their heads and throw pills at me, I decided to take a stab in the dark and go gluten free. After all, my health is so similar to my parents it is scary and even with negative blood tests, I wanted to try. I cleaned out the entire house and made a huge shopping trip to Wholes Food. It was expensive but worth it. I warned my 12 year old that it was going to happen and she was supportive–anything to see mommy healthy again. My neurologist recently commented that he has NEVER seen a patient turn around so fast in his entire career. It has been so amazing that he is looking into food allergies/sensitivities with his other patients that are having such a hard time getting their migraines under control. Added to that–my fibro has practically gone away, I am back to work full time and performing “above standard” according to my most recent evaluation. Absences are a thing of the past. Now here is the kicker: my daughter’s asthma and hypothyroidism has gone away. She is off all her inhalers and is only on a small dose of thyroid medication until she can wean off it. I am down to two pills (one migraine maintenance pill and one rescue pill taken only when I get a break through headache) from fourteen pills daily!!! You can say that the gluten free life is more expensive, but if you add up my prescription costs before I went GF, I was spending much more in pills and health care than I will ever spend in groceries. Good luck to anyone who is wise enough to enter this type of journey to better health. It can be tiring at times and even troublesome, but well worth it!

  92. I have fibromyalgia, chronic and atypical migraine headaches, TMJ issues, sleep disorders, etc., but gluten is actually good for me. I do not have celiac disease, and I feel worse on a gluten-free diet (I’ve tried several versions for months at a time, and I just don’t have as much energy without gluten).

    However, while I don’t have any food allergies, testing my diet led to discover that I am sensitive to soy, dairy, sugar, and every chemical preservative. I avoid a few other things as well (tomatoes, anything pickled or fermented, very cold or very spicy things). Without those items, I’m still not pain free, but I’m definitely more functional as long as I don’t take medication (strange side effects are guaranteed for me). I’m still trying to figure out a few additional things (my reactions to yeast and corn are still being determined – it’s a long process).

    Reading through the comments and correlating them to people I know, it seems like perhaps gluten intolerance is more common in people with autoimmune reactions? I have no evidence of autoimmune reactions; perhaps that’s why I’m not sensitive to gluten, even though I’m sensitive to so many other things.

  93. Trisha,
    I used to have a slight tremor in my hand also, before I was diagnosed with celiac disease. I had tingling in my fingers and toes too, but this was also before going gluten-free. Yours has set in after?

  94. Melissa,
    Incredible story! You are more evidence that the tests are missing people. Congratulations on your recovery and your daughter’s improvement in her health! I tell anyone with asthma that they need to look at gluten and other allergenic foods as a cause (since gluten is what caused my own asthma). Thanks for posting your comment!!

  95. It’s so interesting to read these stories. This is my life. I lived with Fibromyalgia, CFS, and severe sinus problems for about 15 years. It was all I could do to get through the day. I was on strong narcotics for pain and handfuls of other prescriptions for the other symptoms and even prescriptions for side effects to other medications. My oldest son was a horrible baby…colicky, reflux, screamed all the time, and never slept. He grew up with severe learning disabilties and his preschool teacher went as far to say that he was one step away from being retarded (yeah, she was out of line with that comment). My youngest son looked like a walking zombie and had developed migraines. When his migraines became severe and on a daily basis, his pediatrician suggested a food allergy. So, we started a food journal. The very first day, he ate a bowl of ice cream and had a severe migraine. So, we cut out all dairy for him. Since it made no sense to have different diets, the entire family cut out dairy. Within 2 weeks, I started feeling good…fibro free. My youngest son started looking human again, and my oldest son picked up a book and read an entire page. He couldn’t read one word while he was on dairy. We work very hard to be dairy-free but occasionally, we get accidental dairy and get sick. I’ve been very vigilant in trying to help every I meet who has Fibro. Unfortunately, so many think their doctor is going to be able to help them or a miracle drug will be invented for them. Nearly everyone on my mothers side of the family have all the signs of dairy allergy/intolerance. Unfortunately, they are all under the impression that severe sinus issues are normal and all the aches and pains are part of life. I’ve tried to show them the way but they think I’m completely insane.

    Recently, I’ve started to explore going gluten-free. My kids and I have come along way with our health, but I still think we can improve. My oldest son is overcoming his learning disabilities but he still struggles with mild anxiety. I also struggle with fatigue…especially after I eat. I’ve been off of gluten for a couple days and already I am starting to feel better. I used to eat a sandwhich on regular bread and feel tired….even get a bout of IBS. I had two pieces of gluten-free bread with lunch today and I felt amazing after I ate.

    Also, I wanted to add something about system cleanses because that is important when you are trying to get the drugs and other toxins out of your system. Since I had fibro for so long and all the funky side illnesses that go with it…..I was put on a lot of antibiotics. There were times when I was on them for months at a time. As a result, I developed a candidae overgrowth. I now take extra doses of acidophilus along with odorless garlic gel tabs. Garlic is a natural antibiotic with no side effects. The garlic has caused the yeast overgrowth to die off. I have to warn those who are considering this about the die-off effect. It can cause you to feel bad for a couple weeks but it is well-worth the effort.

    I suppose the moral of the story is you should always seek medical advice but that doesn’t necessarily mean that you should always listen to them if their treatment doesn’t work. Be your own advocate, listen to your body and if doesn’t feel good…..then try to make it better. Be careful with prescription drugs as they are toxic. And, if you feel bad, never give up finding a way to feel better. It could be a combination of foods or even the prescription medications you are on.

  96. Hi,

    I’m surprised at some are talking about how expensive a gluten-free diet is as if they were being priced-out of a gluten-free lifestyle. I guess for me, ignorance was bliss!

    For instance, when I first went on an elimination diet, and then added back wheat – and realized then that wheat was the culprit – I really did not even know that expensive substitution products for bread, pasta, etc., existed.

    So, I ate hot brown rice cereal for breakfast, brown rice and veggies for lunch, and for my starch at dinner generally ate more brown rice, a potato or beans (kidney, black or cannelini). A little chicken or fish added to the dinner plate along with a salad makes for a tasty meal, it’s healthful, so what else do you want?

    These items are not expensive so that’s a possibility if you can tolerate them! And you can make the lunch the evening before (frankly, I make enough brown rice and steamed veggies to last several days), take them to work and heat them up in the microwave.

    If instead you try to replace bread with spelt bread or pasta with rice pasta, and waffles with some kind of tapioca version, etc., you will find out it IS expensive. However, if you can afford it, they are handy.

    But, if your pocketbook won’t permit, simply do without the items, as I did – speaking for myself, being pain-free is worth it. Does it take more time? Yes, I suppose, but we celiacs or gluten-sensitive types have a health issue – many people do – and those usually do take time to manage well. I simply feel thankful that I got to the root of my pain issues – so many people never do – so what do I care if it’s a little more work.

  97. Alison,
    The tremors in my hands were before I was diagnosed as gluten intolerant. I have been gluten free for almost 4 months. Some days they aren”t as bad. I also have anxiety and am wondering if this is a cause as well. Does gluten intolerance cause anxiety as well? I am wondering if I could have some other food allergies and have been recently tested and am waiting for results. I do feel quite a bit better, but still feel like something isn’t quite right.

  98. Annette,
    Thanks for your story. I hope your family’s health continues to improve. I do think that for many people dairy and gluten intolerance go hand in hand. Definitely something to explore.

    Irene,
    Great points! And if people eat the way you eat, it is much healthier than eating all the gluten-free alternatives. So many of them really aren’t great nutritionally.

  99. Trisha,
    I believe the tremor in my hand might have been caused by a vitamin or mineral deficiency (I also think that people with Parkinson’s should be on a gluten-free diet). After you eliminate gluten, it can take a while for your gut to heal and begin absorbing properly again. I hope that in time your tremor will go away like mine did. Keep me posted.
    Anxiety is linked to gluten.
    People with gluten intolerance or celiac often have other food intolerance. I can’t eat soy. Many other people can’t have dairy, or corn, or other foods. It’s definitely worth looking into.

  100. What a great article….I did go gluten free more than a yr ago…and I have suffered for YRS from chronic fatigue weight gain…and super foggy brain…just unable to function…after a few weeks off gluten I felt terrific…I had energy my brain cleared…and than I ate something with gluten and was right back where I started…I have tried to not eat gluten again for several months and none of my symptoms have gone away…it is so discouraging…I just long for that time when I felt so great…i have spent thousands of dollars on naturepaths been off and on thyroid meds…and just feel terrible right now although still eating gluten free…I just wish I knew what to do next…

  101. I was diagnosed with fibromyalgia a year ago. I have been a celiac for ten years. There is an initiative by the National Foundation for Celiac Awareness to the FDA to get the pharmaceutical companies to have to label their products as to whether they have any gluten in the ingredients. I am grateful to all who have shared their stories and information as I have learned a lot here. And eating healthy and well is expensive even without the bakery. I would love some raised yeasty iced fresh donuts gf. Who doesnt like food? But it is more worthwhile to feel well to me.

  102. Alison,
    I recently received my lab results and found out that I am intolerant to casein. My Dr. has put me on a dairy free diet for the next 3 months. I am hoping that this recent diagnosis will explain my symptoms that remain…shaky hands, anxious feeling at times, breathlessness at times. Time will tell. For me, going off the dairy is going to be more difficult than gluten! However, if I feel better, then it will be well worth it.

  103. Char,
    There is a website that tells what medications are gluten-free: http://www.glutenfreedrugs.com.

  104. Trish,
    I hope you check back in and let us know if being off casein resolves the rest of your symptoms.

  105. Beth,
    You may have more food sensitivities, which is unfortunately the case for many gluten-sensitive people (me included). Have you done any other food intolerance testing?

  106. I did not read through all the posting so am probably not adding to the current thread, but orignally you requested stories about fybromyalgia and gluten. Here is mine…

    I have fought fibromyalgia since my mid thirties, probably earlier but when you are younger it is easier for your body to overcome things. I am now 54 years old, so have been fighting it for at least 20 years. Since the doctors don’t seem to have any idea what to do about it, about very 6 months or so I do my own research to see if there is anything new and ran across an article that discussed a possible link between celiac disease and fibromyalgia. I discussed it with my doctor and could not talk her into testing me for celiac disease since it is invasive, but she suggested I just go on the diet. I am desperate enough to try anything, so did.

    After a little over a year on a gluten free diet, I am feeling better than I have for a long time. I am not 30 anymore and my body has been abused for all those years. I have had several surgeries and illnesses that has to do with my digestive track – gall bladder removal, appendicitis removal, pancreatitis, etc – so my body will never be what it should be. But I am much better and will continue the gluten free diet for the rest of my life. I do not know if I have celiac disease or a gluten allergy, but whichever, it is obvious that I have found, at least part, of my problem.

    A few months ago I went off all the medication I was taking for fibromyalgia. I hated taking the medication, but it was the only thing that made it possible for me to function as much as I did. It was a bit of a struggle when I first went of the medication. After all I have been taking it for years, but after a few weeks I began improving again.

    Currently I am only taking medication for diabetes, eating gluten free, and actually have energy to spare when I come home from work. I am blessed. :)

  107. Hi Alison, I’m Alyson. I had problems that first reared their ugly head three months ago. It all started after I at a Subway sandwich. I felt nauseated and extremely tired. Then throughout that week the more bread like things I ate, the more horrible I felt. So I cut out gluten the best I could. The doctor confirmed with a blood test that I do have Celiac disease. So I stopped taking all medications and vitamins, and really researched it, so I knew to cut out soy sauce and other sneaky things.

    My whole concern is I am constantly feeling HORRIBLE, to the point that I just sit and stare at a wall most of the day. I have tried my best to cut out dairy and soy. I have had food allergy prick tests which all came back negative, with a slight irritation to chocolate and oranges. Which I don’t even eat.

    So, no matter what I eat now gluten/soy/dairy free I feel EXTREME fatigue, brain fog, lethargy, bloating and hair loss. I am having constipation issues, but not bad. What do you think I should do? Doctors just say it’s gluten intolerance, but why do I feel horrible after I eat anything? This is making me really depressed and not wanting to wake up the next day. I used to be a happy, optimistic person, but now I can’t find anyone who can help me. If you have any ideas I would be so open to listening.

    -Alyson

  108. Hi Alyson,
    That sounds awful. I don’t really have any answers for you, but depending on your severity of celiac disease, it could take a while to heal… perhaps you still have intestinal damage and are not absorbing well. Or perhaps you have another food intolerance (which wouldn’t show up on a prick test). I would recommend going to see a nutritionist who knows a lot about celiac/gluten intolerance.
    I hope you feel better soon,
    Alison

  109. Janet,
    Thank you for sharing your story. It’s mind-boggling that people are forced to search the web for their diagnoses. If only you knew years earlier.

  110. I was finally diagnosed with fibromyalgia in January after a few years of increasing pain (I’m in my mid 30s) that had gotten to intolerable levels. After bouncing around for 8 months from doctor to doctor (and I realize I was lucky but I wasn’t going to stand for throwing drugs at me), I went to see a specialist who tested me for a variety of things including celiac. And boom, positive. Now celiac isn’t the only thing causing this, I have severe Vitamin D deficiency and some brain chemistry issues that are being worked on. But already after 3 weeks I’m feeling about 50 percent better. Soon I feel that I’ll be 100 percent better!
    I don’t think I ever would have thought of celiac because I didn’t have the digestive problems (or weight loss) I associated with it, but I learned that that isn’t the only sign. I’m so glad they were able to help me.
    I wonder about my family. My sister has a wheat allergy (she gets a rash) and tends to avoid gluten because of it. My mom has a series of health issues that I wonder wouldn’t be helped by celiac testing.

  111. THANK you for this information. I have suffered from Fibromyalgia for thirty years, and only recently have I even considered that wheat intolerance might be an issue. My massage therapist who has Graves Disease (also), said it worked for her. I told her that my ‘test’ for it last year had come out negative. She asked if I’d had it while I was eating a substantial amount of wheat products, and I didn’t know. Now, looking back, I see I was probably eating a lot less wheat as it was summer when I had the test, and I eat a lot of salads and veggies. In Fall and Winter and I eat a lot of wheat items in soups, and with hearty soups. I love bread, all sorts, but especially coarse thick crusted breads. This summer I tried a wheat free diet, and did much better. I ‘returned’ to wheat a few weeks ago, and at first, no problem. But as time goes on, ‘my fibromyalgia’ symptoms have returned, including blurred vision and headaches, but especially mild depression and achiness.

    I am going back to wheat free and we’ll see if they clear up.

    Thanks for the comparison lists. I am going to print them out for my physician. IF he can’t help me, maybe it will cause some food for thought, and he’ll eventually help someone else.

    Thank you for taking the time to do this site!

    Debbie
    Oswego, NY

  112. I was diagnosed with fibro about 3 years ago after about 2 years of escalating pain and problems. I’ve also always had problems with IBS and GERD and have taken meds for that off and on since childhood. I’ve also suffered from environmental allergies since childhood and a year ago I decided I should probably start getting allergy shots again (had done so in high school, but stopped in college) and I also was tested for the first time in my life for food allergies. The results for the environmental were the same as when I was younger – mold, grasses, trees, horse – but the list for foods was extensive and surprising. I have worked on elimanating my main cluprits (gluten, dairy, chicken, potatoes, salad, and fish) and am now totally off my fibro meds, I’ve had no problems with IBS or GERD in about 6 months and the rashes I would regualrily get on my hands, arms, feet and neck are gone. I haven’t felt this good since I was much younger (I’m only 28, but at my worse I felt much older). I think that I was probablly misdiagnosed with fibro and am in no way saying that the condition is not real – I’ve met so many wonderful people in the past few years who struggle with this condition. My personal experince though would lead me to think that maybe people who are suffering with CFS or fibro should maybe get tested for food and environmental allergies. It might not lead to a total solution, but it might be worth trying.

  113. Does anyone know of a good doc to do the testing in the Pittsburgh area?

  114. I happened upon this website a week or so ago when researching gluten free candy. Then again tonight when looking for info about my fibro. I was so struck by the article Alison wrote about the connection between fibromyalgia chronic fatigue and celiacs/gluten intolerance. I have been on disability for 6 years my symptoms are so bad and medications don’t seem to help in the least, and god knows I’ve been on them all. I have been to what seems like a steady parade of doctors since I was 14, and I’m 42 now. Family doctors, gastroenterologist, endocrinologists, allergists, pulmonary, rheumotologists the list of specialists just goes on and on. Each one offering little more than a new diagnosis without a cure. All standing I have 18 current diagnosis and take 14 prescription medications. Can you say I wish just one of those doctors had thought to mention that diet may be contributing to the problems? Yet, not one of those doctors ever suggested going gluten free, until recently when my family dr, as a last ditch effort, said lets eliminate gluten and see what happens. Still she didn’t mention a connection though. Just a …well I don’t know what else to do so let’s try this rx. Evidently I had been tested 6 yrs ago for celiacs but had tested negative, however, the test most likely would have been a false negative back then as i was barely eating anything with gluten in it as i was anorexic at the time of the testing. Since she started me off gluten before telling me this though, I would now need to return to eating gluten to be retested. Funny though, I started to feel better after going off gluten. I screw up, alot. My memory is so bad, I forget and pop something my two year old hands me into my mouth before I even think about it and whammo. Sabotaged myself. And boy do I feel it. I swell right up and my muscles knot. You’d think it’d be hard to forget that! Anyway, I was to my allergist the other day because my allergies and asthma are so bad, along with the whole body inflammation and unexplained headaches. Worst in years. I asked if he thought gluten could be contributing or other food allergies intolerances and he laughed at me. He told me foods don’t have lasting effects on the body and that what you ingest acts within minutes if you allergic and would not give me the symptoms I have. While he sympathized with my “extremely broad range of severely life distrubring symptoms” he was sure the none of them related to food. He refused to even test. I wanted to smack him.
    I live in a very rural area and I find that finding any doctor that is willing to listen is very difficult here. they are very closed minded. I haven’t figured out how to find a doctor nearby that is savy in all three areas. Any suggestions? I would dearly love any help available? Does anybody know what the testing is called that is done for food intolerances? My family doctor doesn’t have experience in this area but may be open to my request if I know what to ask for.

  115. I don’t know how helpful it is but celiac.com lists this doctor as recommended from pittsburgh

    Anthony Colatrella, M.D.
    David Limauro, M.D.
    David Glorioso, M.D.
    Pittsburgh Gastroenterology Associates
    Pittsburgh, PA 15219
    Tel: (412) 232-8104

  116. Hi all, Your posts are so inspirational. I just read The UltraMind Solution by Dr. Mark Hyman and started to go gluten free on Monday. I feel more tired, have more anxiety, trouble breathing, rapid heart rate. Feels like I’m going through withdrawal! But I am so hopeful now. I have had severe fibromyalgia and IBS/constipation, severe brain fog, and haven’t been able to work much in 8 years. Depending on how much relief I get, I will also eliminate dairy, soy, etc., if I need to. Thanks for everyone’s comments!

  117. I have no doubt that gluten plays a huge roll on my Fibromyalgia. It was the Fibro that lead me to finding the gluten issue and several food allergies. I wish I could say that it was my doctor who found it, but it was me. I was on many medications, exercising, eating a whole foods diet, taking my 10 supplements including 2000IU of VitD…”Optimal treatment”, were the doctors words. Then why, after 3 years, was I feeling worse? My doctor told me to “join a support group and learn to live with it”. Sorry, NO.

    I did an elimination diet, which gave me not only my life back, but a sense of vitality I have never felt. I still have Fibro flare- up’s but thay pale in comparison to the gluten years. They are also not back to back, and they are clearly defined: from too much activity, too much sun, too little sleep, weather changes, etc. I am now only on 2 meds, at small doses as needed for muscle spasms, and my supplements. That’s it!

    I feel so deeply for those of you that can’t just stop eating gluten, and not look back. Instead of focusing on things you can’t eat, think of everything you CAN eat, and eat it!
    Just focus on fresh meats and fish, tofu, many sausages, bacon and hot dogs, eggs, veggies of all kinds, fruit of all kinds, dried fruits, nuts, sunflower and most snack seeds, beans, rice, salsa, peanut butter, jelly, many progresso soups, pasta sauce on inexpensive Asian rice noodles, applesauce, almond joys, snickers, butterfingers, MnM’s, tollhouse chips, kozy shack pudding, jello, cheese, yogurt, many potato chips, ranch doritos, fritos, corn tortillas and chips, pop corn, grits, polenta, tamales, tacos, olives, pickles, and find one gluten free cold cereal. I find many store brand rice chex are gf for half the cost!

    When you can, add in Pamela’s Baking and Pancake mix, and use it just like Jiffy or Bisquick, and as a cookie, muffins, and baking base. There is only one gluten free bread in the country that tastes like bread should. It’s called, Udi’s. The rest are not worth your money. Buy the Udi’s and put the chips and dip back. Eat each sandwich and be thankful we have it :) Don’t eat out until you have a grip on things. It’s just not worth it. Bring food with you everywhere you go from work or school, church, pot lucks, to run errands, to the soccer game, the wait for the bus.

    If you give yourself 1 month 100% gluten free, you’ll want 1 more, and so on. I have never once intentionally eaten gluten since I stopped. I live on a very tight budget and manage well as long as I eat simply and don’t buy premade side dishes, snacks, junk food or sodas. I actually spend less per week on groceries than I used to eating out and using quick foods in the pre-gluten days.

    Tell yourself every day, I am worth more than this food craving, because YOU are!

  118. Hello, it’s so comforting to read that I am not the only one dealing with these types of issues. I have so many varying symptoms but lack the patience to stick with doctors, they have NEVER been able to explain all the weird stuff going on with me so I never go back, then after a year or two when a “new” problem arises, I try again but as usual my ailment(s) go unexplained and I leave discouraged.

    My journey started with a goiter on my thyroid, filled with an ugly fluid. Same fluid can be expressed from my breasts. Tests came back neg. for cancer so they put me on Synthroid. No change, no cure. Next came the immediate need to find a restroom after a meal which I just dealt with for several years. As time progressed I realized I was having severe muscle tightness in my shoulders and neck, I chalked it up to a need for a massage so I scheduled my first appointment. During the session she asked if I had been diagnosed with fibro., said my muscles felt like it. I didn’t know what that was so pretty much ignore it, very arrogant of me to dismiss her, just like Dr.’s do to patients! Anyway, next came SEVERE PAIN, a few of my upper teeth felt like they were being pulled out of my head. I went to ER they said go to a dentist but I knew it wasn’t a tooth problem, went to four dentists who couldn’t find anything but offered to perform a root canal just in case, (noway). A neurologist sent me for a brain scan, nothing found, Doc. suggested I was having panic attacks and took me off the Synthroid because he said my labs came back ok! After about a week or so the pain subsided and “a friend of a friend” said I was having displaced pain and sent over a book on trigger points….this has helped me tremendously when I feel it coming I can usually stop it with these techniques.

    Anyway, my next attempt for health was to start eating better so, I started eating farina for breakfast every moring. Wheat bread, wheat pasta…wheat everything. Instead of the expected increased health my results were extreme fatigue, hair started falling out, teeth began breaking and heart palpitations.

    This I couldn’t ignore so I went to a Cardiologist and he set me up with a 24 hr monitor. After reviewing the labs and monitor results he said that I was clearing having very frequent heart palpitations but couldn’t explain why, he said some people just get them (at 37?) The only lab issue he found was that I was borderline anemic and my good cholesterol was bad, he said to exercise to correct it.

    I came across an add about celiac disease/wheat sensitivity online and read a little about it…as well as the signs and symptoms of magnesium deficiency and found that I fit into both categories. I immediately stopped the wheat consumption. After a few months I made an appt with an Allergist to be tested for a wheat allergy (tried to avoid a gastro) he didn’t believe me and didn’t want to test me for wheat allergy but finally agreed and when I showed a reaction to wheat he tried to dismiss it as mild and said for me to see a gastoenterologist.

    In the mean time I started taking magnesium supplements to see if it had any effect on my heart palpitations, thank goodness it has, but every time I stop taking them the palpitations come back, so the asnwer is to not stop :).

    Back to the other, the gastro. Dr scheduled the upper & lower scopes, I told the nurse I had been gluten free for a few months and she said it was ok. When I went back for results the Dr said they found one area with inflamation in the lower intestine but couldn’t explain why and that the gluten test came back neg. I told him about the conversation with the nurse and he said that she gave me incorrect info and that I would need to have the scopes done again to be sure.

    So I know I have at least a mild wheat allergy. With the elimination of wheat products my fatigue has disappeared, along with the runny stool and bloating. No more hair loss but I still have severe muscle knots and tightness. I’m exercising but my range of motion is pretty restricted
    and the goiter/fluid is still present.

    I don’t want to do the scopes again if I can help it but I’m wondering if I’m still having the muscle problems because I’ve only been avoiding wheat and not all gluten? Has anyone else read about the connection with celiac disease and magnesium deficiency? Anyone have any info they can share about anything else that may be causing the other problems?

  119. I posted a few months ago about how my fibromyalgia was linked to dairy intolerances/allergies and that I was considering giving up gluten. I finally gave up gluten and have seen amazing results. When I gave up the dairy, half of my fibro problems seemed to disappear. I didn’t have the severe muscle pains but I was still suffering from some digestive problems. I still had some emotional problems such as extreme PMS and mild depression. Since being dairy-free and now gluten free, I feel like a completely different person. I do have to add that it is important to fix the GI tract with a good probiotic. I also wanted to add that I believe my family’s gluten/dairy intolerances came from over-exposure to antibiotics. In addition to my “new person” feeling, my son (who had severe learning disabilities/anxiety) made the honor roll for the first time. He experienced the same things I did. Removing the dairy took away half of his problem. He could read but he couldn’t comprehend. He still suffered with anxiety. Two days after removing gluten, he and I had a conversation for the first time. It was amazing. Since then, my mother/stepfather have gone gluten-free. My stepfather’s diabetes is in check now and my mother’s fibro is gone as well. My frustration now is convincing other sufferers that they can help themselves. Has anyone had success in helping others without sounding insane? And, does anyone have a good gluten-free hair care line? Since giving up gluten, I’m having a really difficult time with hair care products that contain wheat.

  120. Kelly,
    Celiac can cause any vitamin or mineral deficiencies and brain chemistry problems. Wondering how you are feeling now?

    Debbie,
    Sounds like you need to be 100% gluten-free. Good for you for educating your doc!

    Amanda,
    Congrats on your new health! I agree, everyone should consider food and environmental allergies instead of hoping that meds will mask symptoms (they rarely do).

    Tammy,
    I can’t tell you how many times I have heard about doctors laughing at their patients for their crazy ideas about food affecting the body. ARGH! Of course food can have lasting effects!! Would he say that food doesn’t have lasting effects on our muscle and bone development? Brain development? It’s ridiculous to say that food can’t have lasting negative effects. It sounds to me that you should just be gluten-free, but if you need a test, you can do Enterolab testing via the mail. Go to http://www.enterolab.com.

    Anne,
    Stick with it! Some people do go through withdrawal from gluten. Hope you feel better soon — keep us posted.

    T,
    Thanks for the story and the encouragement. People will really appreciate it!

    Shellie,
    It seems obvious to me that you have some form of gluten intolerance. You should be avoiding ALL gluten, 100%. If you do have intolerance to it, each time you eat even a little, your body is going to react. Your body will never heal completely. Celiac disease has been associated with any vitamin or mineral deficiency because the intestines are damaged and cannot absorb. Thyroid problems are also closely associated with celiac disease. Go gluten-free and don’t look back!

    Annette,
    That is so wonderful about you and your son — wow. Congratulations to you for taking the plunge. I wish more people would just do it (go gluten-free) and see the amazing results that you have. Regarding hair care, there is a site that lists GF cosmetics (but it costs money to join): http://www.glutenfreecosmeticslist.com. I haven’t used it but it looks pretty comprehensive.

  121. Over the years been diagnosed with migraine, tmj, ibs. Had a polyp in my rectum and after it
    Was removed still had ibs symptoms. I have had a lot of other symptoms of fibromyalgia though never dxed.. Really when I get migraines I get brain fog (I have a hard time speaking/formulating thoughts) and pain all over my body and also nausea/vomiting. Got frustrated with migraines and though skeptical Tried gluten free for a month and felt great. After a few days all my symptoms were gone, usually had daily migraine like headaches and then nothing whole time I was g free. I would still get headaches with normal migraine triggers (dehydrated, etc) that didn’t feel like a migraine– completely different not excruciating feeling, what I think a normal headache might feel like. No migraine during my period even and that’s never happened in my life. No vomiting or ibs and less gas. Went off it for a bit (yes it is hard!). Felt shitty, then tried to become vegetarian… Noticed when I started eating all the wheaty protein burgers I felt like I was hit by a truck every day. Gave into gluten free really works. Felt great again since-just about a week but I’m convinced. Its more expensive but a lot of things are cheaper corn rice etc and it is worth a try for me it literally takes only one day to feel better. Admit the hardest thing for me to give up is beer, gluten free beer isn’t the same :) also it is frustrating my mom brother and uncle all have terrible migraines too but not willing to try gluten free.

  122. Thrilled to find this sight. A long time aquintance of mine was just diagnosed with Celiac Disease after being told she had fibromyaglia for twenty years. She had so many days of work lost and she lived in severe pain. She was better within two weeks of going on a gluten free diet. What is wrong with the medical community? I suffered for years with severe abdominal cramping, bloating and untamed bowels and I too have the gluten intolerance. I feel so much better.

  123. Elaine,
    Thanks for the story. My husband used to have migraines also until eating gluten-free. I wish more people would try it!

  124. Hi Susan,
    Thanks for adding yet another story of gluten being the cause of fibromyalgia (for which doctors say there is no cause!)

  125. My mom completely cured her fibromyalgia by going gluten-free (and milk and corn free). She also did a candida cleanse that she says contributed to her recovery.

  126. Thanks Maryann for yet another success story! You have some interesting articles on your blog too.

  127. Hi,
    How wonderful I have found this site (thru Stephanie-the crockpot lady). I have struggled with ‘symptoms/flare-ups’ for years. So many tests with no answers! A couple of years ago I started having tremors (mostly head but all over my body at times)along with other major MS type symptoms. Neurologist finally did a spinal tap after all other tests were negative. Well, nothing showed on this test either. He suggested a second opinion at Mayo. No allergy tests have been done. Could allergies actually be causing all my issues for these many years??
    Thanks for all the insightful information given.

  128. Robin,
    Yes, food sensitivities — particularly gluten — are to blame for so many health issues! Be sure to get it checked out and please keep us posted!

  129. Hello Allison,

    I read your story on another site and decided to take your invitation to comment on this.

    Yes, I have Fibromyalgia and Yes, I tested positive with Celiac Disease not gluten intolerance. I had the SI biopsies performed and it showed a severe reaction to gluten. I have been 95% GF for about 2 years now.I say that because I find that as hard as I try to be GF, I occasionally get some unknowingly. I am currently off of all medications mainly due to the change in insurance carriers that the company that I work for experienced but also because of the severe effects that I experience when I take the medications. There are so few that treat FM around here. Everyone mostly wants to send me to Chiropractors and Massage therapists, as well as physical therapists. All of which are helpful but not long term.

    My symptoms of Fibromyalgia are consistently the same on the diet as off the diet. The symptoms of Celiac are significantly improved since the adoption of the GF Diet. I am no longer anorexic and my liver chemicals have returned to normal, my kidneys are functioning properly now as well. I am no longer anemic, pernicious or Iron. I am told that I now have a heart murmur that I didn’t have before, but it is probably from the extended period of time when I was in malnutrition.

    I find that the weather changes significantly affect me and those are what I term as my BAD days.

    I have been on MANY different medications but it is my understanding that when Celiac goes undetected for long periods that it can permanently damage the SI, which when even on a GF diet I would have compromised absorption of medications and so forth. I still experience adverse reactions to most medications, simple analgesics like Tylenol put me to sleep for several hours. I am scheduled to see the ‘new’ doctor in April. I fear that I will have to start all over and that this new process will feel as if it never will end. I am hoping that this new doctor is open minded and can wrap his mind around all that I have going on. Maybe…I am just expecting/wanting too much.

    Thanks for your story. Beth

  130. Beth,
    Have you ever had your vitamin levels checked? Thyroid? Celiac can cause a host of other issues.

  131. I have suffered from pain for a long time. Since diagnosed with fibro I bought the book what your dr may not have told you about fibro and thought Guai was the cure. Now I through reading found the I have celic disease. Also I decided to take only herbal remedies instead of meds, and Stinging nettles helps the wheat allergy so the headaches arent so bad. And Dandelion,Burdock and Licorice combo are excellent for pain. I emailed the author of the book and she said nothing. Im sure they are in big business from the books. I hate the ups and downs though. I took a multi vitamin and had a huge micky fin.

  132. What are the tests for this called? In 2003 I got IBD and I have some joint pain. What has caused this? I never had these problems before? Thanks cameron109@yahoo.com

  133. I am totally of the same opinion as you. Yes, it is OBVIOUS that there is a connection. And, yes, financially, and in every other way, it is very difficult to live gluten-free. But, after having been down that road, I am absolutely astonished when I encounter people like the lady in your story. Why can’t they understand???….it is WORTH EVERY PENNY IT COSTS & IT IS WORTH EVERY AMOUNT OF EFFORT IT TAKES!!!! ESPECIALLY when it is a CHILD who might be celiac. If I had a child who might possibly be celiac or gluten intolerant, I would do whatever it took to keep them healthy and safe. I would have the WHOLE FAMILY go TOTALLY gluten-free immediately…..it would be beneficial to everyone and it would show love and support for the child who is at risk. I know quite a few people (including children, and adults with chronic fatigue and fibromyalgia) who I know would benefit from a gluten free diet….and it could possibly totally solve their whole problem. But, they have every excuse in the book for not getting the proper testing….or even trying a totally gluten-free diet for more thatn just a couple of weeks or so. Yes, it’s hard (to begin with) BUT IT IS WORTH IT. It breaks my heart to see them suffering needlessly….and to know that every day that goes by they are incurring more damage to their body.
    If I had only known what my problem was sooner, I could have avoided 25+ years of damage to my body and I would be so much better off today….physically AND FINANCIALLY.
    I’m sorry for such a RANT….but, it just drives me crazy to see people take this issue so casually….especially when their children are at risk…..PARENTS ARE SUPPOSED TO PROTECT THEIR CHILDREN AT ANY COST. PLEASE everyone….take this seriously.

  134. Hi, The information on this page seems very helpful I jsut wondered if you can help me.

    I was diagnosed with CFS 10 years ago after a viral illness. I have one child and am pregnant with my 2nd. I spend all my precious energy either working or playing with my kids. I have none to spare for my husband and I feel guilty for this.

    2 weeks ago I was diagnosed with Gluten intolerance (My mum and brother are also gluten intolerant). At first I was seriously angry that it had taken 10 years to find out considering how many times I have sought help. Anyway, I have been gluten free 2 weeks and I don’t really feel any better yet. Given that I am 11 weeks pregnant I expect to feel tired. How long would you expect it to take to start feeling better from eating gluten free? I am happy to live gluten free if that’s what I need to do but I had expected to feel slightly better already.

    I met a lady in the super market today who said she was gluten intolerant and felt better within a week!! I feel slightly disheartened.

  135. in addition to the comment above. Sorry, I pressed send before saying thank you for any help.

    I know my body will have been damaged from eating gluten my whole life so i will contiue to eat gluten free. But there is still the question in my mind that what if my problem is not gluten.

  136. Hello. I wanted to post a follow up since I haven’t posted in a while. I see so many people giving up gluten on this board and they still don’t feel better. Something to seriously consider is giving up casein (dairy). That was the first thing I gave up and when I did the FMS pain was gone (in about 2-3 weeks). The “flares” stopped, the sinus pain was got better, the IBS went away, and the headaches slowed. When I gave gluten up, the headaches went away, the stomach pain stopped, the depression went away, and I felt wonderful in about 2-3 weeks. In addition, I had to replenish my body with the nutrients I had been deficient in for about 10 years. I had a blood workup done and I was D and magnesium deficient. I take multi-vitamin supplements and extra D. In addition I take a GOOD probiotic to heal the colon that has been so badly damaged with the casein and gluten. I also take odorless garlic capsules to combat the systemic yeast infection that I suspected I had because of all the prescription meds and antibiotics that stripped my system and allowed an overgrowth of yeast.

    After 6 months of being completely free from gluten/casein, I joined the gym (imagine doing that with fibromyalgia!)….so far, I’ve lost 17 pounds. I am building those muscles that were lost during the 10 years I sufferred with FMS and the other battery of auto-immune illnesses.

    My son, who was suffering from autistic symptoms is now a straight A student and catching up to his grade level. When he does get some accidental wheat, it tears him up. He reverts back to his manic ways until the gluten leaves his body in about 2 weeks time.

    I know it seems like a lot to give up both gluten and casein but there are some great alternatives out there. Daiya cheese is the best, almond milk/coconut milk rocks, and So Delicious dairy treat is the bomb! The important thing is to read your labels carefully and educate yourself about what has the problemed proteins…..for example, if you drink wine and have a casein problem, you are going to have problems with most mass produced American clarified wines. And the best advice I can give is to hang in there and keep trying to find your problem…..because chances are its a combination of things.

  137. s worthington,
    Are you now gluten-free? Do you feel better?

  138. Cameron,
    You should be tested for celiac disease – especially with the symptoms of IBD and joint pain. Even if you test negative, you may have gluten sensitivity and it would be worth it to try a gluten-free diet.

  139. Kelly,
    Depending on your level of damage from celiac, it can take a while to heal. Some people feel better right away and some don’t. I imagine since you are pregnant you have a lot of other things going on. I would see a nutritionist and check your vitamin and mineral levels, especially vitamin D. It could be that you are still lacking from having celiac. And I agree with what Annette says that you could have another food sensitivity.

    It is lucky that you have been diagnosed now so that you might prevent any complications for you or your baby during pregnancy and birth!

  140. I have not noticed any difference following the celiac diet to relieve fibro pain. I was diagnosed with fibro in 1986. Was diagnosed with celiac in 2010. Have been strict with myself on diet. No difference in pain. The diet is a pain to cook with (particularly in baking) so most of the times I just don’t cook it. The kitchen was never my favorite place to be (rather be gardening or riding my horse. I follow the diet but things are so expensive, hard to find, or take too long to fix (example: several kinds of flour to make cakes, etc.). Tried Betty Crocker yellow cake mix and added other things. My husband said it still tasted like corn bread with icing. I agree!

  141. I, too went through the desperation of trying to find out what caused my CFS and fibromyalgia. When I was finally diagnosed with celiac disease, I started having thyroid symptoms. When my thyroid dipped, my muscle and joint pain skyrocketed to the point of painful misery.

    Hashimoto’s disease (and autoimmune disease that causes low thyroid production) is also very common in people who have celiac disease. And it’s one of those problems that is very hard to get diagnosed for because doctors are ignorant or dismissive of the current wisdom on the subject. Those of you fibro patients with gluten intolerance or celiac disease, please get your thyroid tested (TSH, FREE T3 and FREE T4 tests).

    Also, there is one more autoimmune disease with a removable trigger: rheumatic fever is caused by a general immune reaction to strep infection. Remove the strep, remove the rheumatic fever. I had it too, when I was 8.

  142. Thank you, Thank you, Thank you for posting this on the apparent connection to FB CF and Gluten Intolerance!!!

    I’ve been quite bothered by the fact that I wasted 10 years of my life with “Fibromyalgia” when it was really Celiac and other Food Allergies/Intolerances all along!

    Long story short I was FORCED to eliminate many foods all the sudden (due to adverse reactions), and have been eating this way for about a year and 4 months now…. I am sooooo much better. NO PAIN OR FATIGUE now (unless an allergin food accidentally gets into my system).

    My years and years of other physical, dental and even neurological issues explained – Finally. AND IT IS SO SIMPLE.

    I’M BEGGING OUR WESTERN DOCTORS TO PLEEEEEAAAASSSSE WAKE UP AND SMELL THE GLUTEN…. and other Food Intolerances!!!

  143. Wow! Thanks for this research and I’m glad I found your blog. I can’t believe I’ve never known this before (I feel like I’ve read the entire Internet some days) but I have almost every single symptom you listed for Chronic Fatigue Syndrome! Very long story short, I’ve had doctors suspecting fibro on and off for a multitude of symptoms and happened to ask my chiropractor what she knows about it. Now I am just about a week into a gluten- and dairy-free diet, and I likely have a whole host of other intolerances and allergies as well. I am hopeful even though today I actually feel pretty rotten!

  144. As a diagnosed Fibro patient I understand how bad the Fibro and IBS are. I was diagnosed 6 years ago and last May my symptoms became so bad I had to leave my job.For years I fought it and ended up sleeping my weekends away.Constant pain,severe fatigue,and generally feeling horrible became my daily schedule.

    I’ve spent tens of thousands of dollars and still feel no better. I have become numb to the everything looks good on your tests routine.

    Sleep does little even when I get some.I never feel rested.I’m also not able to eat dairy products. I often do with lactaid pills and pay for it later.

    I’m very intested in going GF and seeing if it helps me at all. As other Fibro patients know we would do anything to feel better.I will let you know how my journey ends. Thanks for the help.

  145. Linda,
    I’m sorry you don’t notice a difference. What I’m really thinking is if you had been properly diagnosed 24 years earlier, a lot of damage would not have been done.

  146. Michelle,
    Great that you finally got diagnosed correctly. Sorry you lost those years of your life. It is frustrating!

    Giranimal,
    Please keep us updated on how you feel being gluten-free!

    Kevin,
    If you try the diet or go get tested for celiac, keep us posted!

  147. I tested negative for celiac with one of the older blood tests, but went off gluten anyway. Really, the IBS had become livable, and I rarely complained about it but the fibro was causing the most pain – muscle and joint pain, foggy brain, poor coordination resulting in many falls that would start that whole pain cycle anew. Though the IBS symptoms went away within days of going gluten-free, the fibro symptoms took a good 6 months before I noticeably felt better, and I’m still not completely pain-free as I approach a year gluten-free. I’d encourage those with the same types of symptoms to try going 6 months to a year before they fully assess whether gluten is affecting their fibro. And I’m positive that being gluten-free will eventually fix my fibro, because that pain comes back full force with an unintentional glutening.

  148. Fat L. Celiac – you might want to consider that there are also other food intolerance or allergies going on besides gluten. This was the case with me anyway. It also took a few months for my pain/fatigue to diminish and almost a year before other symptoms completely vanished. I personally have a slew of food intolerance/allergies that were the issue.
    Good Luck!

  149. Fat L. Celiac,
    Thanks for sharing your timeline — people always ask me how long they should go off gluten before they would see a difference. Of course, it’s different for everyone and depends on the issues they are having. 6 months to a year is probably longer than people have tried before they have given up, so this is very helpful information.

  150. I was diagnosed with fibromyalgia and have chronic undiagnosed inflammation. I recently went to a naturopathic doctor who tested me for food intolerance. The results were that I have a severe intolerance to dairy and eggs and a high intolerance to pineapple, wheat and gluten. I started my g,egg,dairy,pineapple-free diet a week ago. So far some of my symptoms have been eliminated such as all-over tingling, sinus pressure and sharp head pains. However the most severe debilitating symptoms of pain and fatigue are still here. I’m very hopeful though.

    I found this article that I think is very interesting and gives me hope that if I continue this diet I will see results.

    http://www.healthresearch.com/fibro.htm

  151. I was originally sort of diagnosed with muscular dystrophy as a child when I was twelve.. 1990 i Believe. They never really were sure what type of MD I had so last summer I got a rediagnosis and the neurologist looked at me and said I was normal and had nothing neurologically wrong with me.

    I had to put things together to figure out whats goin on with my body. I had chronic fatigue, bloated belly, irritable bowels, had rosacea, and many other things that just didn’t fit to me as being normal. Put those together and It brought up the words Gluten Intollerance or even Celiac Sprue. So I shut the wheat intake down. I had never ridden a bike a mile before and now I can ride my bike 15 miles a week or more. (Still building up strength from what a neurologist said, save it, because it will waste away.) I have no experience with Phys Ed because I was told to not do that anymore. But I am much stronger than I have been a year ago. I’ve glutened before by accident and I develop quite a temper, and I’m usually sitting on the toliet for more than an hour then want to go to bed.

    So if anything comes from me, missdiagnosis happens.

  152. I think this is very interesting, but at the same time I believe it’s deeper than the fact that they have matching symptoms and that by eliminating the gluten a lot of the issues are relieved. Let me also mention that I have a mother with Celiac Disease and also a sister with Fibromyalgia. Can I see that the two are linked in some cases? Yes.

    What is the most interesting thing is that both Celiac Disease and Fibromyalgia (and the symptoms associated with them – including intolerances to other foods) are in fact symptoms of something even bigger. They are both symptoms of an overabundant supply of candida yeast within the body.

    I have been so overwhelmed with the sadness of my sister suffering for so long and not being able to provide herself with the nutrients needed to heal her problems. It’s a sad government that we deal with in America where they don’t allow or help with holistic remedies and so the tax payers go on paying for the individuals her suffer from the corruption that they have supported in the food industry.

    I will be curing my sister of her Fibromyalgia and my Mom of her Celiac Disease (more accurately of their yeast infections). Follow my blog. I’ll be updating about our journey to health. :)

    http://www.FamilyHealthNaturally.blogspot.com

    (Our posts on soaking grains are especially helpful to those who have a gluten intolerance and not full blown Celiac – although soaking is helpful with any flours.)

  153. My dr. recently put me on a strict diet. He removed many foods including dairy, soy (due to a thyroid disorder) and wheat (since he believes I have fibro). I still have pain and fatigue, but have felt much better since the diet changes. I can definitely tell a difference when I eat wheat.

    I recently found a great book at Barnes and Noble/Amazon called The Allergen Free Baker’s Handbook. All recipies are free of wheat, soy, dairy, eggs, nuts, and seseme. This is the only book I’ve been able to find so far with recipes not containing all of the foods my dr. has restricted. I am hoping that the dishes turn out well and that baking them myself will be a little less expensive than Whole Foods. My family is southern and baked goods are a staple of meals ( :

    I will say since removing wheat, my cravings for sugar have decreased, my blood sugar seems more even (I feel less gittery), and I’ve lost 3 lbs. in 2 weeks. I haven’t been able to lose any weight for months.

    Thanks for the article and info, I wish I would have known years ago…thankfully I’m going to a great doctor now. God bless.

  154. hi all,im 20 years old ,over the last few years,gradually got worse,ive had muscle tension and ache also my joints and sexual impotence,also hypersensitivity to light,smell and sounds witch bring on more tension, i cant bear it anymore,my lifes upside down i find it hard to concentrate and think.
    a few doctors have mentioned fibro but ive had no tests for it,then i came across this site,do you think i could have a gluten intolerance,im going to give the gluten free diet a go anyway. thank you!

  155. Natalie,
    Good luck with the diet and the baking. The cookbook you got from Cybele Pascal is a good one, and there are lots of resources on the web too!

  156. Jack,
    All of your symptoms could be attributed to gluten intolerance. There’s no harm in trying the diet. I hope it works for you — please come back here and let us know how it goes.

  157. Jack,

    You could also have a thyroid disorder, which can go hand and hand with celiac disease and gluten intolerance. It can be dangerous and make you feel miserable.

    To check for thyroid, ask for these specific tests: TSH, Free T3 and Free T4. If ANY of these are outside the range of .05 to 2.5, ask for an antibody test (TSI for low TSH, anti-TPO for high TSH).

    Where the thyroid is concerned ALWAYS ask for copies of your lab results. Too many docs disregard very important deviations. BTW, the gluten free diet has been successful in getting thyroid levels back to normal, but it’s still of the utmost importance that you get tested, the success rate isn’t high enough to go without medication.

    Kit

  158. hi thanks for the advice,also i read about dairy products can also be affecting me?should i eave them out of my diet too? thanks ever soo much!=)

  159. sorry another question, i have a friend who has been ill the same time as me also has huge amounts of tension in her stomach area,who has been told by an osteopath that she has a hiatus hernia,shes 18 and hasnt had a period for a year an a half,lost so much weight,looks more like a shadow of her oldself,she has drastically changed her diet, which helped.
    right so yesterday i came across a post relating hiatus hernia with celiac desease or gluten intolerance,have u any idea if this is true?id really like to help her out..THANKS

  160. I gave up dairy before I gave up gluten and going dairy-free stopped the muscle pain,restless legs, IBS, and sinus issues. Going gluten-free stopped the headaches, fatigue, and stomach pain. At that point, I was able to start going to the gym again to lose some of the FMS weight I had gained over the last 10 years. Gluten and casein are very similar proteins with the same effect so it’s definitely worth giving up dairy to see if you receive some benefit. It’s difficult living without both but we’ve found alternatives and eat much healthier. I’ve helped 5 other people with FMS they had the same experience when they gave up dairy first. Good Luck!!

  161. At 16 (an athletic, active teen) was told I had fibromyalgia + chronic fatigue (and a Mother who reiterated the diagnosis for years). I dealt with it, and assumed it was simply my ‘normal’.

    At 30, after my Father was diagnosed as a Celiac (revealed during his cancer treatment), my 3 brothers and I tested, and I, along with two brothers, learnt we had inherited the gene.

    Since eating GF, a llllllllllll lifelong symptoms of both fibro + chronic fat gone — overnight, in fact.

    All skin issues, bowel and emotional issues gone, too.

    Poof.

  162. I truly believe there is a relationship. I became seriously ill with CFS in 99 one day – had noticed slightly bf this that I felt weird/uncomfortable whenever I ate wheat. 8 years later I was diagnosed with asthma (linked to wheat allergy). I noticed my CFS symptoms improved when I ate low carb and no wheat. I also suffered from multiple skin rashes throughout these years that would clear when I was eating low carb/no wheat. This year out of the blue, I developed severe true blue wheat allergy – my tongue swells to the point that I need intervention.

  163. Wow Karen – do you have to carry an Epi-pen for wheat allergy?

  164. Fibromyalgia and….
    It is not only gluten, but as I am just finding out –FRUCTOSE– and probably sugar, but don’t know about glucose.

    So UDIs Gluten Free bread not only costs a lot, but it would also make her WORSE. It has TONS, AND TONS of sugar. Almost all gluten free are SUGAR LOADED.

  165. Hello Everyone

    What a wealth of information! I’ve been
    Complaining of aches and pains and stuff my whole
    Life, people in my family call me a
    Hypochondriac haha. I’m starting to suspect
    a gluten intolerance.
    I’ve had asthma as a child, IBS my whole
    Life, I’m 30 now, some benign thyroid
    Cysts(which the doctor says to ignore), I’ve been
    told I was anemic, and now recently, the worst
    Thing EVER!!! Is a painful foot that wont
    Seem to heal. The doctor suspect RSD,
    reflex sympathetic dystropy! Holy Crap are you
    kidding me? This is the worst thing in the world
    and I’ve been through depression as well
    because of it! I’m taking st johns wort for that
    Now which has helped
    Me tremendously!
    I’m seeing a reumetologist now and he
    Is testing me for auto immune disorders,
    but I only get my results back in 2 weeks.
    I started going gluten free four days ago
    and I still have pain but I’m hoping that
    Over time it will get better. :(
    I’ve had to quit my job and I can’t even walk
    To get the mail. I’m clinging on to this
    Diet for hope and I really Do hope it works
    Cause I can’t take much more of this!
    I want my life back and I’m thinking that
    This diet might be a good place to start.
    My heart goes out to all of you who suffer
    from pain everyday and have found no relief.
    there’s got to be an answer! Maybe it’s
    Gluten. Wish me luck!

  166. Thank you for this article; I told my support group about the reasons why giving up gluten is important. It helps me with some pain management but it really helps me more with the fatigue, memory issues and ibs. I have been tested for celiac’s and it came back negative. Prior to that I went gluten free as best I could for months and when I went back to cheaper, gluten food I felt ill and my pain went through the roof. I’m still learning as I go and doing my best on welfare and foodstamps as I wait for approval to go on disability. I really appreciate this article.

  167. I have been diagnosed with a number of food allergies (dairy mostly), but nothing about gluten intolerance or a wheat allergy.

    I have been messing with my diet for a while now and still felt tired. I mean exhausted… just didn’t want to move and I couldn’t concentrate on anything. It made me depressed.

    So I said ‘what the heck’… I tried everything else. And I decided to cut gluten from my diet for 2 weeks…

    After a few days, I felt very sick. A week, I felt more energized. After two weeks, I felt like a teenager again. I never had this energy! And I felt as though I couldn’t keep up with my head… my brain was going 1,000 miles a minute. Just awesome!

    Then I ate a slice of bread… I felt like crap all over again.

    Cut it out for 2 weeks, same wonderful feeling. I don’t care about the price involved. I am not touching gluten for the rest of my life and I swear by it! I’d rather starve than feel that way again. It is a waste of a life.

  168. Hi Anon,
    Glad you feel better! Many people feel like they have woken up after they stop eating gluten.

  169. Hello everyone,

    I am gluten, dairy and corn sensitive and have read some of these posts where people are avoiding just gluten (and not dairy and other possible foods they could be sensitive to). So I just wanted to recommend testing for other food sensitivities. A lab in Texas that is popular for gluten sensitivity testing, also does dairy and other things as well. Another helpful test that is 93% reliable is called the MRT that tests for 130 foods and chemicals. There is a program called LEAP that some people do after the MRT test that usually gives great results by eating only your least reactive foods then gradually adding in other foods. That is the test I did, and found I was also sensitive to 15 other things I was totally unaware of. Some registered dieticians do this test (but not enough of them) or you can deal with the lab in Florida directly yourself. They give you a plan to go by after the results show what you are reactive to. Elimination diets can be tricky since sensitivities can take 2-3 days to give symptoms. Often times gluten (and dairy too) cause the initial problems in the body, then you become reactive to other foods as well. That probably explains why just going gluten free or gluten and dairy free isn’t releiving all symptoms. I found out thru this test that corn is a problem for me too, which makes it really hard since many GF products and recipes use corn. I have to make many things from scratch but feel SO much better. I didn’t even have stomach issues, but rather muscle tension issues, tingling, foggy head and sometimes headaches. Avoiding nighshades is another thing to look into since they can cause problems for people (tomatoes, white potatoes, peppers etc.). Also, the gluten sensitvity issue can run in families like CD, so if you are a parent and suspect your child could have issues, test them too! I’m talking about stool tests and/or blood labs. There is more gluten in products now more than ever in history. Regular doctors do not seem to even consider any of this, so many of us have to do our own research and testing to find out the truths behind our un-resolved (mystery) ailments. If you are unable to do testing, a 2-4 wk trial off of dairy for example would be a really good thing to do since gluten and dairy problems often go hand in hand. Good luck! I just can’t beleive the difference I feel after omitting all of my reactive foods that I want to scream this info from the rooftops and tell as many people as possible! :) I wish you all the best of luck…

  170. I know I’m several years late here, but I wanted to add my experience, because I think it relates, but in a different way. I was diagnosed with Lyme Disease in May of 2011, and went through the typical antibiotic treatment, but all my symptoms kept coming back. Only when I eliminated wheat gluten, sugar, alcohol and dairy did I experience relief. I don’t know what I have…it could be Chronic Lyme, Chronic Epstein Barr, Chronic Fatigue or Celiac Disease itself, all I know is that it gets much, much better when I stay away from the bad stuff.

    I’m preparing to get tested for Celiac now, and have to eat gluten for three weeks. I’m on day two, and am seeing all my old symptoms return: brain fog, joint pain, headaches. I might say to hell with the test, because this is all the confirmation I really need.

  171. OK, listen up, people. First of all, I have been told by my doctor (an MD) that if you have any sort of auto-immune condition, you should not eat gluten, whether or not your Celiac blood test comes back negative. You could be sensitive to gluten on a very small level and it could be helping to destroy your body and create pain and havoc. Even if you’ve eaten gluten your entire life and don’t think that you have digestive problems….sometimes it doesn’t cause digestive problems specifically.

    Secondly, I want to state that if you have gotten off gluten and still have symptoms, GET YOUR THYRIOD CHECKED OUT! And NOT just a TSH test. Tell your doctor that you need TSH, Free T3, Free T3, and both sets of thyroid antibodies. The antibodies are especially important. Insist on them. That test will tell you whether you have auto-immune thyroid disease, such as Hashimoto’s!

    Undiagnosed thyroid disease is a HUGE reason why a lot of people feel bad, get body pain, gain weight, and have depression. If you have an auto-immune disease, you are getting a double whammy. And if you have all of this and still eat gluten, it’s like sticking yourself with a pin and then complaining that something hurts you.

    Many doctors are clueless about this. Please educate yourself. There are two books you should read: “Solved: The Riddle of Illness” by Dr. Langer, and “Stop The Thyroid Madness” by Janie Bowthorpe. I’ve also heard that the book “Wheat Belly” is very good.

    If you are found to have a thyroid condition, it is better to take Natural Desiccated Thyroid than Synthroid. But again, many doctors don’t prescribe it, which is unfortunate.

    Please educate yourself! If you have a family history or any of this stuff, it is a big clue. Many doctors don’t understand this stuff. You have to be an advocate for yourself!

    Just my two cents.

  172. Just stumbled across your website. Incredible stuff. When I was 9 mos old I had pancreatic insufficiency. This was in 1950. Was dying of starvation. The doctor hospitalized me and I don’t know what they did but I had to be put on goats milk for awhile. I never liked bread, cereals and pastas. Always had itchy red spots on my skin. Now I am 61 years old and was only diagnosed October 2010. My skin cleared up a month or two after being gluten free. What is wierd is my mother had been diagonsed with colitis, took pills for that and her thyroid. She developed Ranouds syndrom and ended up dying from pancreatic cancer. Nine months later her first cousing died from pancreatic cancer. I beleive they died from Celiac Disease.

  173. I appreciate everyone’s stories and would like to share a little about corn intolerance. It took months to narrow down corn as my pain culprit. Months for the peripheral neuropothy to finally go away. If you do not have a diagnosis, I did for FM, then I encourage you to food journal. You must commit yourself to at least a monthnof writing down EVERY THING you put in your mouth, even gum (you could be reacting to artificial sweeteners too ). Any time you feel different, good or bad you must write that down to. It took me a long time to figure out thatni cannot have corn and night shades, most alcohol, and artificial sweeteners without causing a reaction. Night shades are just stiffness and fatigue, corn is the devil and as little as one corn chip puts me down for a week with flu like aches and pains like I have been beaten with a baseball bat. I have a whole different list of foods I avoid for migraines. I am pretty sure if I went gluten free I would feel better yet, but as it is people ask me all the time, “what DO you eat ?”
    I am really not sure I can handle gluten free too. Especially when I saw you have to be careful with beauty products and shampoos, I eat a very limited diet as it is. Gluten free makes me want t cry since half that has corn in it too.

    I encourage all of my clients to start with the food journal, it is a cheap place to start and it is usually easier for people to give up one food at a time rather than cut out several. Ideally you would spend a month on an allergen free, anti inflamation diet as I did, but it still took months to add all the foods back in and start to see patterns.

    Good luck on your journeys!

  174. Thank you for the wonderful blog! Jennifer did you know yellow corn in most instances is a Genetically Modified Organisim, but white & blue corns are not? GMO foods have been the victim of gene splicing & one of the largest seed companies has their attorney on the board at the FDA…. No wonder GMO’s got through w/ no testing. For more info on that see http://www.rareseeds.com They are a seller of heirloom seeds which are not GMO, but a wonderful resource of info on GMO’s. I also deal with gluten daily. I however was diagnosed with Ulcerative Colitis 18 years ago & was basically thrown to the wolves by my Dr’s who told me it wasnt food related & there was nothing I could do about it. The pills did me no good and eventually I just stopped taking those. As a child I was Dx with Dyslexia at age 5, then as I got a little older began having issues w/ my knees, hands, & feet itching & swelling. Then when almost 20 yrs of age I began having what was thought to be chronic stomach viruses. At 23yrs old Ibegan having rectal bleeding , passing mucas, & my stool looked like mustard! This of course sent me straight to the specialist where I was Dx but received NO HELP after being given a colonoscopy w/o any anesthesia or pain medication! Dont get me started on that one…. Over the years I became sicker & sicker because modern medicine swore none of it was food related. I experienced depression, acne, facial numbness, cerebral numbness, dizziness, brain fog, various digestive issues, metalic taste in my mouth, tinitus, then chronic fatigue so debilitating it almost destroyed my relationship with my sister because I was bed ridden when she needed me most. During that time my mother suggested I go to a Naturopath she heard about. I had NOTHING to lose. Saw him a few days later. He took me off gluten, explained the immune response, gave me herbal supplements to support my adrenals, repair my gut, & balance my immune system. 3 mo later after slowly figuring out GF & accepting the adjustment I felt alive again! I suggest to anyone new to this to get Gluten Free on a Shoestring so you dont go broke trying to cook! 1001 Gluten Free Recipes for tons of variety. & http://www.glutenfreemommy.com, as well as this blog! You dont have to go broke to eat & feed your family normal tasting food. Most wont even know :0)

  175. Yes yes and yes! You hit the nail on the head. I began suffering from chronic fatigue when I was 13, after 12 months of irritable bowl syndrome and 3 cases of chicken pox. Within 12 months I had poly arthritis (meaning arthritis in every joint in my body). Thank goodness that after visiting every doctor in my small town and the next, I finally found a doctor who had me tested for celiac (as my mum suffers from it) along with every other allergic known to man. I am now 28 and live on a gluten free, dairy free and soy free diet. It took me around 5 years to get myself “healthy” but I have energy, I manage my pain without medications, work a 50+ hours a week job and go to the gym for at least an hour every day and cook 3 meals a day for myself and my boyfriend. I can only say what a revelation it was to discover what diet really does to your health and well being!

  176. I am 38 and obese, and have suffered for YEARS from chronic fatigue, arthritis pain, depression, chronic migraines and insomnia. About 3 weeks ago I had an epiphany and changed the way I eat. I accidentally started eating mostly gluten free. I’ve always had a slight dairy intolerance so I never eat a lot of dairy, and always chose organic if I had a choice if I was going to eat/drink any dairy. Anyways, I just gave up processed sugars and breads etc. I started eating fresh veggies and fruits, significantly reduced my meat intake and only gluten free pasta. What I’ve noticed is that in the last 2 weeks I haven’t had a single migraine, the chronic fatigue is a thing of the past, my arthritis pain is significantly reduced, I’m not depressed and I’ve been able to get to sleep and sleep 7-8 hours every single night. This is working for me, I don’t know why or how..but it is. And the icing on the cake is that the pounds are dropping off me so fast I can’t keep up with it. I need to buy a whole new wardrobe!!

  177. When I was 18 I was diagnosed with hashimotos and pcod. After a few years I developed sensitivit to synthroid so my dr put me on levoxil (I’m no longer the wicked witch of the west since I came off it) in my mid 20′s I was diagnosed with ibd, pernicious anemia, b12 deficency and Von wilderbrands type a. Basically my doctor said I have no intrinsic factors. My iron was so low I had to have iron infusions and I was told it was a wonder I wasn’t in a casket or a coma. About the time I started going thru the infusions I started having muscle pain, worse than normal fatigue, muscle spasms so bad I thought my ankle was you g to break on more than one occasion and chronic insomnia ( 6 months of 4 hours a night if I was lucky) so I pretty much just sucked it up and felt with it. I had several friends with fibro tell me to get tested but I didn’t. My dad had fibro, parkensons, cluster miagraines, chron’s and a host of other problems, so when I started loosing my dexterity and balance and lost feeling in my fingers and started having random muscle twitches I finally went. My doctor ran a full pannel of bloodwork (6 vials worth) everything came back good except my vit d was low, so he diagnosed fibro and cfs. I have several food allergies in addition to lactose tolerant so I already avoid milk ( I can do cultured milk and cheese in moderation) and I can’t do red meat and I’m sugar free as well so it was the natural next step to go g/f. I’ve been doing it just over a week and between him changing my meds and increasing my b-12 injections (I do them daily now) I’m starting to feel a little better. The stomach problems are getting better but the muscle spasms and cramps aren’t. My sleep is getting a little better two. I’m averaging 6 hours a night now. I told my doctor if standing on my head and singing Yankee doodle dandy would help I’d try. I’m learning to live with limits, but I’ve always been on the go so it’s being hard for me.

  178. *Please excuse the typos in my post. I’m using my iPhone and it has a small keypad.

  179. Been diagnosed with fibromyalgia, chronic fatigue, Raynauds and am now constantly constipated. The doctor I have stated to just eat a high fiber diet (alot more whole wheat)and lots of water. ( I guess 80 to 100 oz a day is not enough) Trying myself to change my diet.

  180. The thing that bothers me is how so many people are so resistant to such a simple possibility of relief! The fact is you don’t even have to buy gluten free anything.. in fact you can save money period, by cutting out bread and pasta without replacing it with gluten free alternatives. 6 years ago I was 200+ lbs, tired, depressed and just all over down and out. I knew nothing about celiacs.. I just weighed myself one day and said wow! I’m fat I have to lose weight. I cut out bread and pasta completely.. and I lost 70lbs+ In the past year my sister has been diagnosed with celiacs, and I myself am now being tested for it. Eating gluten free gives me relief from my sciatia, keeps my weight healthy and I feel a whole lot better.. even if my test comes back negative, I will continue to eat gluten free! Reading the book “Wheat Belly” just sealed the deal.. I highly recommend everyone read that book and then research everything in it.. You will see that the benefits of eating wheat free are for everyone.. and that continuing to eat wheat really has no benefit at all!

  181. “audra, on May 2nd, 2012, said:
    Been diagnosed with fibromyalgia, chronic fatigue, Raynauds and am now constantly constipated. The doctor I have stated to just eat a high fiber diet (alot more whole wheat)and lots of water. ( I guess 80 to 100 oz a day is not enough) Trying myself to change my diet.”

    Audra, I read your comment and just had to comment on your comment.
    This was me exactly. No matter how much wheat fiber I ate, the more constipated I got. I have been diagonsed with Celiac almost 2 years ago and when I eliminated gluten from my diet, everything got better, especially the constipation. I do eat high fiber via vegetables and fruit and I take metamucil. Even my rash on my elbows went away.

  182. I have been diagnosed with fibromyalgia for only a few months (8′ish). I had a colonoscopy because of several years of rectal bleeding that finally became more problematic than I was any-longer willing to deal with. They found a villous adenoma! Im only 37 years old!

    I have just been to see a GI specialist as follow up (it’s been a couple months since the polyp was removed) and she just sent off blood work to see if I have celiac. I’ve never heard of this disease… She never really asked me very many questions, so I’m woncering of the GI field is on it. :-) It sesmed like a standard screening.

    I don’t know if I have it yet. Will know in a few more days I guess. I do also have Hashimoto’s and that is autoimmune… I have heard about gluten-free diets and have been SO super negative! (don’t hate on me…) I eat/ate boiled wheat almost every morning! I bake my own fresh-ground whole wheat bread! I think I eat more wheat than everything else combined!

    Well. I’m going to give it a try. I know all the symptoms from my own life and I AM DONE. maybe it’s pricey to buy “alternatives” but perhaps I can just eat other carbohydrates like potatoes and corn? they are pretty cheap. Not bread, so sandwiches are out.

    I was married to a type 1 diabetic for 11 years, he had to adjust his food choices for his illness, and why can’t I? Thanks for the articel.

    Mindy

  183. Here’s a new one. I released the resentment and anger in my life which was inside of me and wasn’t going anywhere. It showed up as fibromyalgia. Once I gave myself permission, through the assistance of an amazing Reiki master, I released the emotions that were locked in my body. I juice twice a day and eat no wheat or dairy (Coconut milk is amazing)and I have zero health issues. I learned how to release those emotions through Reiki dialogue and Emotional Freedom Techniques. It’s not about what I was eating, but what was eating me.

  184. Hi there, i have been on a very long arduous journey with gluten, fibromyalgia, depression, anxiety, chronic intestinal issues, no conclusive evidence on anything except that my body is inflamed, constantly. Someone asked about genetics and i have recently found out about the MTHFR gene, and the effects of its mutations, which are widespread and can be a link, in addition to food as to why chronic conditions continue. To make it as simple as I understand it, MTHFR is a part of an enzyme process that affects methylation, which is our bodiy’s ability to detoxify and synthesize and use B vitamins. Two enormous issues adding to the food conundrum because if we cannot detoxify ourselves and we eat processed foods, have an immune response constsntly turned on, and a defunct digestive system it’s a world of hurt and confusion. MTHFR Is linked to autism, midline defects, anxuety, add, thyroid conditions, raynauds and the list goes on. Not the cause but a link, a very important link…..worth looking into if you feel like you’re running into walls. Food is medicine, it is wellness, it’s just hard teaching that in a world where the quick fix or the cheapest fix is the easiest. But it’s hard and takes time but if you can be patient with yourself and learn about the foods you put into your body, you will feel better. Guaranteed. You can’t fuel a jet engine with cooking oil, same with humans. If nothing else makes sense, the easy rule is if it comes in a package, meaning it’s been processed, don’t eat it. Bulk bins of quinoa, rice, farmers markets sometimes are great deals. Anyway, if you want to learn more about MTHFR, the guy who i have fou d to be the expert, and i have done a lot of painful research is Dr Ben Lynch….google him, it’s worth it. It’s confusing but he’s super smart and dedicated to wellness.

  185. I was diagnosed with fibromyalgia at age 15. It ruined my life. I had to drop out of school. I thought I would be suffering with it forever. Then my friend told me that fibromyalgia pain could be caused by gluten. I didn’t really believe her, but I figured it was worth a shot. Especially since I had tried everything to fix the pain, including pharmaceuticals that ended up ruining my life even more. I immediately felt a difference the first week of being gluten free. The pain is gone and I can actually walk and go places again. The only time I get flare ups is when I accidentally eat something with gluten in it. It’s good to know I’m not alone and that other people have benefited from a gluten free diet too.

  186. I feel like I have read the entire internet searching.

    I have suffered with an unexplained abdominal pain, unexplained anaemia, brain fog, dizziness, anxiety, light headedness, bloating and excess gas and poor skin for over two years now! I have had scans, been diagnosed with IBS. I have taken iron tablets for the last 3 years which just made the tummy pain worse and didn’t cure the fatigue. I have also almost choked in my sleep on night after re-flux thankfully woke me up.

    Only last week after complaining to my gp for years about this abdo pain am I being screened for celiac? Awaiting blood results? I am 41 and fed up with feeling constantly tired, dull aching pain in same spot and spotty face!

    My doctor is convinced I have IBS but I am not convinced? I also found out that IBS and hypothyroid (which I also have) are prone to celiac?

  187. Wow. I have read everyone’s comments and although i feel sad for people in pain..i also feel excited. I am 34 and had severe body pain, numbness, burning feet, tremors in fall of 2011. shortly after this…about 4 weeks…i went to my doctor and got a plethora of tests done and she said it was because i was depressed and had anxiety. (i definitely was moody but i would say i was not in a deep depression). she put me on an SSRI called Cipralex 10mg (lexapro) and within 3 days my pain was easing off. It was a ‘miracle’. One year has past and throughout the time i did had sensitivity when working with my handd or being touch (if my kids would hug me hard or jump on me)…i also noticed that my hair was falling out too much! I think this was because of the medicine. I am now on 2.5mg of meds and my pain is creeping up on me. i do not want to be in pain or bald so i just took a HemoCode food intolerance test. I am hoping that i can help myself as i have a strong suspicion it is food. I will update in the weeks ahead. i wish all of you luck!

  188. Hi, I am 47 and until 3 months go was perfectly healthy. Late August, my legs repeatedly went numb, the pads above my knees swelled, and I was in so much pain that my legs felt as if they’d been filled with wet sand and broken glass. Was referred to a rheumatologist…no arthritis. My doctor suggested fibromyalgia. So I did a bit of Internet research. Apparently there’s a strong link between this an gluten. My son is coeliac…and as it is genetic, I thought I’d try eliminating gluten too. I am on my second week of. Gluten free diet, and I really notice the difference…. already! This time 3 months ago I thought I’d end up in a wheel chair. My grandfather died from stomach cancer in the 60′s…perhaps he was also coeliac and nobody ever knew! I wish doctors would start making links in family genetics before they tell patients this or that…

  189. I was diagnosed with fibromyalgia and Sjogren’s Syndrome in 2004. I first realized the link between what I’ve been eating and my fibro flares last December. I’m a teacher and we have so many sweets before the holidays. After a week of eating rich desserts and goodies, I have a major flare that put me on the couch for several days. I thought it was the sugar. It happened again the last week of school with graduation/retirement parties. I flared and more or less struggled all last summer getting my symptoms under control. My husband bought the book “Wheat Belly” by William Davis. We went wheat free in early September and even though I’m not totally strict, I feel so much better. I think the link is there and now I’m more determined than ever to stay gluten free!

  190. Lyme disease also mimics all of the symptoms listed for CFS, fibromyalgia, and food issues. It’s always a good idea to be tested for it as it’s a simple blood test, and treatable.

  191. I was diagnosed w/ Chronic Fatigue Symdrome & Hashimitos Thyroiditis. I went gluten and soy free a year ago. Both issues are now gone & I’m 100% healthy. xoxo

  192. I was diagnosed with Hashimotos Thyroiditis in 1982, Chronic Fatigue in 1990, and Fibromyalgia in 1992. I was later diagnosed with arthritis, irritable bowel syndrome, acid reflux, GERD, migraine headaches, eczema, seasonal allergies, etc. In an effort to lose weight I tried a low carb diet that required me to eliminate grains for Phase 1 of the diet. It’s the best thing that ever happened to me. I wasn’t expecting any health improvements, only weight loss, but after a couple of weeks I noticed my acid reflux was gone, I hadn’t had a headache in while, I had more energy, and my joints and muscles didn’t ache. I eventually discovered that it was the grains that were causing my symptoms, specifically wheat, corn, and oats. If I have anything with corn in it, my fibromyalgia, arthritis, eczema, and allergies come back. If I eat anything with wheat, I get a severe migraine headache and my fibromyalgia and chronic fatigue and digestive problems come back. So if you have tried a gluten-free diet and you were still in pain, I would suggest you eliminate all grains. You can then add them back in one at a time to see if you react to them. Another thing that is imperative is to check all prescriptions and over-the-counter medications most of them have corn starch or pregelatinized starch (typically derived from corn) or gluten in them. For instance when my doctor changed my thyroid medication to Synthroid, I was in a lot of pain so I checked with my pharmacist and there was corn starch in the prescription. I also read food labels carefully since it seems like corn and wheat is in everything. I avoid maltodextrin, dextrose, carmel color, obviously high fructose corn syrup (a very common sweetener), wheat, gluten. Even baking powder has corn starch in it. Soy sauce, most seasoning mixes and soups have gluten. This sounds like a lot of trouble, but it is so worth it. It is so wonderful to be pain-free and have energy again. I can run down the stairs without pain, instead of grasping the railing and slowly easing my way down the steps. I can go shopping and do activities with my family. I no longer need my handicap parking. I no longer have to sleep in a chair since my severe acid reflux is gone. It’s so nice to thing clearly and my headaches are gone. Yes, it’s worth it!

  193. Don’t you love it when they try to make us think that are pain is just anxiety?

    The doctors don’t want us to find out what foods are causing us pain. They want us alive but not dead, just sick.
    I remember one doctor mocking me for modifying my diet. It was such a foreign concept to her. They think the only solution is to take more painkillers.

    I started on a gluten free diet 2 years ago and the idiot doctor back then dissuaded me from doing the Celiac test.
    BIG Mistake. I got a new doctor and we need to know if I have Celiac to explain my other problems but I was gluten free for 2 years now and the celiac blood tests don’t react.
    So if you think you have Celiac get a transglutaminase and a DGP blood test to confirm this.

    While I got relief going gluten free but then the pain came back. I kept a food diary but it was still getting pain relapses.
    At first I thought there was still some hidden gluten but with keeping a food diary I discovered other foods were causing pain. But it can be hard to tell sometimes so
    I just got a food intolerance test done and it turns out I’m highly sensitive to wheat but no Celiac. Some of the results corresponds to my food diary but some foods I never suspected came up on the intolerance test like cabbage and orange juice and others that were suspect foods like peanuts and sunflower seeds are ok according to the food intolerance blood test. Now that is weird!!!
    The problem with all this food intolerance diet is that I’m too embarrassed to socialize now and you can forget going to a restaurant.

  194. Addendum: I’ve been reading more comments above.
    If everyone were to cut out wheat, dairy and eggs, the pharmaceutical companies and doctors would all go out of business LOL! Good luck to everyone and keep empowering yourself and your healing by eating the right foods for you!

  195. Tamara,
    Thanks for noting the parallel symptoms of lymes to the things listed here. I know a few people with lymes and they are truly similar. I did get tested and don’t have lymes…

    I’d like to update that I’ve been adding a ton of greens to my diet and some fish oil (not in a pill, kind of hard to take at first, but better for stomach), and my bloodwork shows no antibodies and I’m now totally off thyroid replacement! My Dr. listened to my plan and we went slow so as not to shock my body either.

    I’ve gone grain free and will add rice back in soon. I don’t actually miss the grain. I will test one grain at a time – maybe this summer, but I want to give my body some time to heal…

    Just a shout out to everyone, we so don’t have to live with this chronic pain.

  196. Hi there, so sorry for that lady. Helping nature is very good and you have that. I personally did not know the connection between these three. By reading this story I really shocked and tear came out of my eye. I hope nobody suffer from these kind of disease.

  197. I tell you my little story, about 15 years ago after a visit to the dentist I’ve got fibromylagia and tmj. Most of the symptoms you listed I actually had and had chemical sensitivity and had to live a gluten free diet. I had digestive problems and 2 years ago I almost did not survive than my heard start’s giving out and I ended up with an acute chronic pancreatis.

    What I found out after educating myself and finding the rootcause of my problem is. any chronic condition has to come from somewhere..
    16 month ago I start drinking 1 tsp raw apple cider vinegar ( only use Bragg)in an 8 oz glass of water 3 times a day before 4 pm. You have to balance your ph level. The problem is everyone has different issues. My fribromylagia went away.
    A common cause for the items you listed it’s low in stomach acid which trigger all the problems you listed. You can find many information online to use make an hcl test what you can purchase in any health food store and see if this might be the cause. My cause was from to much antiobotic and I start having systemic candida which led to many autoimmune diseases. What works for me might don’t works for the next person. Where I gained lots of knowlegde is on the largest alternative site earthclinic. What I found is you really need to educate yourself and find the rootcause and your symptoms go away. Unfortunatly doctors do not know and prefer that’s you pop a pill. to cover up your symptoms. It could also be a combination from heavy metal, mold etc. I am no more gluten intolerant and most of my issues went away. Systemic candida it’s not an easy task to get rid of but I am almost there.

  198. Hello,
    I don’t have a disease that caused my gluten removal, but a new baby who would scream all day if I ate it. I feel so much better and my baby (now 7.5 months) is still nursing, developing and growing!

    I don’t buy all the Wheat replacement products. They are very expensive and are almost or equal the the extremely high glycemic index of wheat. It took some time, I’ve learned to make real food (which we were already eating) without the need of gluten products.

  199. Gorgonzola Dolce – Gorgonzola Dolce is a creamy and tangy blue
    cheese from Italy’s Lombardy region. But chocolate candy bars high in chemicals, wax and sugar are not beneficial at all. Your kids can cut and roll up little pieces of the ham and add to the platter.

  200. I was diagnosed with IBS when I was 12. I was sent to the dietitian who figured out that I was intolerant to lactose, fructose, galactans and fructans (fructans and gluten normally occur together in the same foods). But the dietitian never suggested gluten intolerance since she went with the Doctor’s diagnosis of IBS. My health gradually deteriorated over the next four years as I was told that I could gradually reintroduce the “bad” foods back onto my diet without any further symptoms. So I did this (my gastrointestinal symptoms certainly seemed to clear up for the most part, except in relation to lactose) – and ended up with fibromyalgia instead! I lived with full-blown FMS for 2 years and after a while I discovered on the Internet that gluten intolerance and FMS and IBS are often related. So I went back on my IBS diet, as well as cutting out the one or two extra grains that contain gluten but not fructans (in fact, I cut out all grains since I also have hypoglycaemia). My FMS symptoms have diminished greatly from following this diet – that is, everything except for the pain. I won’t bother listing all my FMS symptoms here, but i pretty much got all of the symptoms possible for FMS, so much so that i missed a lot of school and was bedridden for an entire year. The reason I still experience the pain is because chronic pain pathways have been built into my body over the time in which gluten WAS causing me pain. That’s okay though, because there is a brand new therapy (which I’m getting – I can afford it because I took out extras private health insurance in order to pay for all my healthcare treatments) called Trigger Point Therapy. Both physiotherapists and occupational therapists can administer this therapy, but I found the Occupational Therapy version of it MUCH more relevant and helpful to someone with fibromyalgia (because Occupational Therapists treat the patient holistically). My advice is: follow the GAPS or the leaky gut cure diets AND gluten-free diet AND specific carbohydrate diet (if you suffer from hypoglycaemia) AND get trigger point therapy from an Occupational Therapist who specialises in neuromuscular techniques. Physiotherapists are good if there are any structural problems underlying your pain (I have slight scoliosis and flat feet which put my whole body out of whack – physiotherapy was of tremendous help with these problems). SIBO diagnosis and treatment is another possibility to consider; I am considering it myself right now, but it is expensive and as I don’t have a job…

    By the way, it’s not that expensive to go gluten-free! I go to the nearest farmers market, and there is lots of cheap fruit, veges and meat there. I use nuts instead of grains, but not more than a handful’s worth of nuts per day because too many nuts isn’t good for you. I made a really nice pumpkin pie with almond crust the other day (thanks for the easy and fabulous recipes I can prepare and eat while on this diet goes to the 4 Ingredients book and the Wellness Mama website).

    Note: organic! No sugar! Very important to your health! I have gone organic and sugar-free as well – it makes me feel so alive! Think organic is too expensive? Think again: enviro care earth makes a Fruit and Vege Wash that washes away harmful chemicals from produce before you eat them. If you’re buying your produce from your local farmers market, then you can afford to buy organic pantry items (e.g. cocoa powder, sea salt, almond meal, apple cider vinegar) and organic meat. For me, it ends up costing around the same price as if I went to the normal supermarkets to buy all my groceries (when I’m not on a diet that is – it would be majorly expensive to follow this diet and buy all the food from Coles!)

    Also note that toxins should be avoided elsewhere too – use organic skincare, housecleaning products, clothing and linen. Once again, this doesn’t have to be as expensive as it sounds. Look up homemade skincare and housecleaning products on the Internet. As far as clothing and linen goes… I haven’t actually done this yet but I’m planning to when I get rich!

    Also, if you’re getting panic attacks, do a food diary (it’s a good idea to do that in any case, actually); your symptoms may in fact be a hypoglycaemic reaction to eating the wrong foods for someone with hypoglycaemia! The doc thought I was having panic attacks but turned out that avoiding certain carbs fixed the problem.

    Summary:
    •holistic nutritionist (GAPS/leaky gut diet and healing the gut)
    •occupational therapist (gradually decrease chronic pain and sensitivity to touch)
    •physiotherapist (treat any structural body problems; the Physiotherapist can pick up on probs that your doc has recognised, so it’s worth going at least once to get checked out – that’s what happened with my flat feet).
    •go organic as much as your budget allows – starting with your diet
    •see your doctor… But doctors can be wrong or miss part of the puzzle. Consult other sources of information too or you will probably be sick for many years to come. Sometimes it’s good to “just do what the doctor tells you” and sometimes it isn’t. You need to weigh up the facts and make informed decisions about your healthcare, because the doctor will never know your body quite as well as you do.

    Hope this info helps someone like it has helped me :)

  201. I have Fibromyalgia and Chronic Fatigue. My health was so bad that I was completely disabled for 5 years. I couldn’t take care of my young children or manage my home. I went from being a people person to dreading being around others because my headaches were so horrible that any noise would send me to my knees in pain. I was constantly sick and every few days catching a new virus that was going around. I could not walk across the room unassisted because my balance was so bad. The weather changes made me a prisoner in my home especially when the storm clouds and heavy rains would come in. These were just the more pressing symptoms.
    I have made many changes in my life and now my flare ups are mild and still manageable. Here is what’s helped me:

    * I do not eat gluten it flairs up the Chronic Fatigue so that I can’t function.
    * No food that have hormones such as chicken or milk (I buy organic or from Publix grocery store)
    * No nightshade veggies such as tomatoes, potatoes, eggplants, hot peppers.
    * No overly processed foods such as frozen, prepared foods, fast foods, food ingredients with lots of additives. Just looking at the label you will know, if it has more than 5 ingredients (or you don’t know what most of the ingredients are and they seem to be written in another language)you shouldn’t eat it.
    I was a new person after staying away from my ‘do not eat’ list. Now when the weather turns I only have mild symptoms instead of severe.
    If you suffer from Fibromyalgia and Chronic Fatigue it is very important to take your vitamins! If you don’t like supplements then you can eat foods high in vitamins your body needs. Here’s a lists of vitamins I take daily:
    * B complex ( this really helped my energy levels)
    * Omega 3 oils
    * Multivitamins (look for vitamins that have the highest percentage of each vitamin)
    * Vitamins K, C
    When taking these vitamins above your body will take what it needs and dump the rest.
    With Chronic Fatigue your body is so depleted from vitamins it desperately needs. Taking these vitamins daily fixed my Chronic Fatigue.
    Learning to cope with Fibromyalgia and Chronic Fatigue require a complete life style change. It has been a lot of work to find the information I needed. I have to constantly be on my toes about my health, but it’s worth it because now I can have a life and take care of my family that needs me.
    Hope this helps someone.

  202. After years of suffering from bowel and body pains, I began a gluten-free diet. I am amazed at the difference in how I feel. The exception to the above is that I now suffer from constipation rather than diarrhea!

    I would like to know how someone gets tested for gluten intolerance or celiac disease. I’m gathering facts first before finding a new Gastroenterologist to help me. Also, does anyone have a good resource for gluten-free foods?

    Thanks in advance. I’m happy, angry, and amazed that, after all these years of suffering, I may have found my own cure by eliminating gluten from my diet!

  203. Update: I had the Celiac blood tests several times
    and I got the Celiac biopsy test: no celiac.
    But… the doctor says I have Crohn’s disease.
    So if you test negative for Celiac, do get tested for Crohn’s disease.

  204. I forgot to say: Crohn’s disease causes joint pain in some people.

  205. I had fibromyalgia for 8 years! Typical symptoms with so much pain. My Dr. Suggested testing for a Vitamin D3 deficiency! Sure enough it was at 17! Very low! I started on Vitamin D3 three times per day & in 3 weeks the pain disappeared ! A miracle ! Soon I found out that I halos had Celiac Sprue & was deficient in B12 magnesium, calcium, and have been on the gluten free diet! I also have very bad fingernails! They don’t grow. Thin. Lift from nail plate & are soft & extremely thin! Like onion skin ! Also I can’t seem to eat sugar, honey or almonds!
    Does anyone else have any of these issues ⁉️

  206. I thank you for this post and all of the people who have responded to it.

    I began to be gluten sensitive after a minor car accident of which my head hit the back of my headrest. This incident affected my pituitary/hypothalamus. Not to mention I went from very healthy to chronic pain and fatigue. That was many years ago, now after a 2nd car accident my gluten sensitivity is worse (I can’t even enjoy the gluten free prepared foods at the store that I have to prepare all of my own foods or stay strictly vegetarian when eating out and all of the sudden I became sensitive to even more things/foods. Some drs say I have fibromylagia, but drs don’t like to give that diagnosis as it makes it hard for you to find another dr because most drs don’t or will refuse to treat those with fibromyalgia.

    I think its possible that gluten isn’t and is the cause of fibromylagia in certain circumstances. In my case, the accident was the cause to my brain totally flipping a switch on how it chose to operate. This might be a combination of things like the head injury itself or the spinal issues after the accident. However, I know that gluten can make issues worse and the accident was the cause of my gluten sensitivity. So I think its impossible to determine in each case what came first, the chicken or the egg unless you have a good note of the person’s medical history.

  207. I had not heard of this, but it is definitely something to consider. So little is actually known about disorders like fibromyalgia that it is great to have as much information that you can so you can discuss all the options with your doctor.
    I do know that irritable bowel syndrome and gluten intolerance have similar symptoms. While I’m sure that sufferers if IBS would benefit from a gluten free diet, most find significant relief from eliminating foods that are difficult to digest, like complex grains. When the woman said white bread didn’t make her feel as bad I immediately thought IBS. IBS often accompanies other problems like fibromyalgia or anxiety disorders.

  208. I’m not going to write a long dissertation, just a simple “yes” going gluten free (Paleo)has begun to eliminate my symptoms. I feel a little better each day.
    I am pleading with all of you sufferers…get off the man made garbage, mainly wheat, gluten products and eat as clean as possible! You WILL feel better!

  209. Going gluten-free has eliminated many of my symptons (migraines, chronic fatigue, acid reflux, irritable bowel syndrome, etc.). Going corn-free has eliminated my fibromyalgia, arthritis, eczema, and allergies. Even the smallest amounts affect me. My doctor switched my thyroid medication to synthroid and I was in a lot of pain. I checked with the pharmacist and the prescription had corn starch in it. I switched to Nature-Throid and I felt fine. If I get even the slightest amount of gluten such as from cross-contamination, I get a severe headache, fatigue, nausea, and I become very emotional. The first day is the worst, but the symptoms usually last for seven days.

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