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?
Joyce Hughes says
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.
Anna in Cali says
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!
alison says
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!
Anna in Cali says
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
alison says
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! 🙂
Christine says
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
Anna in Cali says
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
alison says
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.
Anna in Cali says
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!
Diana says
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.
Yvonne says
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.
Kim says
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.
Kristin says
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
Leia says
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”.
Anna in Cali says
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!
Anna in Cali says
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…)
Maddy says
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
Debby says
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!
alison says
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.
Amy Hajec says
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
alison says
Amy,
I have heard of that book, but have not read it. Is your mom gluten-free now, and how is she doing?
Jennifer says
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.
alison says
Jennifer,
So glad you feel better. Thanks for sharing your story! I hope it reaches many people.
Alison
Joanne says
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.
Wendy says
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
alison says
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!
ava says
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.
Wendy says
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.
Linda says
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.
alison says
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
alison says
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.
alison says
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.
nush says
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.
Laura says
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 !!!
alison says
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.
Linda says
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
alison says
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.
jeannie says
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.
alison says
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.
trisha says
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!!
Melissa says
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!
Andrea says
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.
alison says
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?
alison says
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!!
Annette says
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.
Irene says
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.
trisha says
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.
alison says
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.
alison says
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.
Beth says
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…
Char says
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.
alison says
Char,
There is a website that tells what medications are gluten-free: http://www.glutenfreedrugs.com.
trisha says
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.
alison says
Trish,
I hope you check back in and let us know if being off casein resolves the rest of your symptoms.
alison says
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?
Janet says
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. 🙂
alison says
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.
Alyson says
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
alison says
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
Kelly says
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.