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?
Mouse says
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.
cheers says
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.
Ann says
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
Barbara says
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!
Sharon the Blogger Queen says
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.
Adrienne says
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?
alison says
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!
Sarah Schatz - GF/CF menu planner for people with food allergies says
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
Ally W says
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
Shari Cheves says
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
Dianah says
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!
Kim says
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!
alison says
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!
Karen says
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!
Nicole says
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.
Jennifer says
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.
els says
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.
Karen says
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
Mae says
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.
BG says
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.
VICKI KING says
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
Irma says
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.
Barbara says
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.
Lisa G. says
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.
alison says
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.
Stephanie says
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!
Jennifer says
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.
CC says
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??
alison says
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
Joan says
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
kycabo says
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?
Lori Whiteman says
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….
alison says
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!
Megan Oltman says
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!
Pam Skinberg says
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.
Carolyn says
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
Sue Hecht says
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…
Terri says
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.
Jacqueline P says
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.
Katherine says
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 â— JID 2008:197 (15 April) â— 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!
Janice from Michigan says
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.
chris says
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.
Jay says
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.
alison says
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.
Melissa says
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
alison says
Melissa,
You can find a gluten-free guide and other articles about eating gluten-free here:
http://www.surefoodsliving.com/celiac-disease/
A says
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!
Lee says
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.
Joan Perkins says
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.
Tabitha says
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!