Why does/Does gluten cause pain?

Can anyone please tell me how gluten could exacerbate pain symptoms and if they've had any reduction on pain by eliminating it? Also, if there any value to cutting way back in gluten, rather than eliminating it altogether? We're looking into this option for our daughter.

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While I am not on a glutten free diet (in process of food allergy testing), I do have IBD and many allergies, including those to food. When in my early 20s and I was breaking out in big hives everywhere, my allergist explained to me that the same thing that I was seeing on my skin/feeling on my skin (inflammed itchy big bumps that grew to migrate into one another as they spread) also occurs on the inside (lining of my body structures). Some foods will make the skin on the roof of my mouth very sore and peel. It would make sense that it does the same inside the esophagus and to the stomach/bowel.

He also explained to me that it can take days to get the reaction calmed down (which I already knew from the hives/itching on my skin). I would think a glutten intolerance would be the same. If one is sensitive to glutten it would be better to avoid it altogether, since when it's introduced into the diet, it sets all the symptoms back in motion until it calms down again.

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What about for someone that has never shown an intolerance to gluten per se, and has tested negative for celiac?

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I am no expert on this subject, but I too am considering a gluten free diet for my daughter and am just starting to look into this. I did speak to a relative who said she tested negative for gluten intolerance and celiac, but she went on a gluten free diet anyway, and she feels SO MUCH BETTER than she did before. So, I think some people test negative even when they would benefit froma a gluten free diet. What kind of testing did she have done? My daughter's neurologist suggest that my daughter get IgG testing (which is uaually not covered by insurance). I haven't really researched this yet, so I am not recommeding it or anything, just throwing the info out there. If you want to avoid expensive testing, the best thing would just be to try the diet for 2-3 weeks and see what happens...alittle bit of a pain, but probably worth the trouble. Good luck!

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Both wheat and corn are so genetically modified that the body can have an inflammatory response to them just because it doesn't recognize them as food (this is what a doctor told me). For some, it's not the gluten, it's the "fakeness" of the foods. Same with refined sugar. When I cut out wheat, corn, and sugar, my pain goes WAY down. I also do not have celiac or any gluten intolerance, as far as I can tell.

But it's also very difficult to do because all the good foods have at least one of these things in them!! So I go in cycles of cutting them out and then giving up and adding them back in, then having pain, then cutting them out again. It's silly, I don't know why I can't just stop eating them.

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Dr Henderson's office suggests anyone with EDS cut out Gluten. I stopped eating it 10 years ago and my joint pain went away, although I am not very symptomatic anyway. I used to be able to eat it occasionally, but can not anymore. My son stopped a few months ago and his nausea and most stomach cramps went away. There are plenty of gluten replacements so he is still able to eat bread, muffins, pasta, and even pizza. Whole Food s has tons of gluten free food.

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I know 3 persons who are gluten intolerant. You cannot cut back on gluten, you have to eliminate it completely if you are intolerant to it. My mother-in-law was diagnosed at the er, she weighted 85 pounds and was about to die if the doctor hadn't found it.

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how old is your daughter? eliminating gluten requires eliminating a large group of foods, and should only be undertaken if necessary. Perhaps she is allergic to wheat only? the following is from Food Allergies, a book put out by the American Dietetic Association:

"A food intolerance is an adverse reaction to food that does not involve the immune system. A food allergy , sometimes called a food hypersensitivity, is an abnormal response by the immune system to a harmless food protein that your body mistakenly identifies as a harmful invader; the immune system produces antibodies against that food. When the food, referred to as an allergen, is eaten again, histamine and other chemicals are released, triggering allergy symptoms in the skin, respiratory tract or digestive tract. While people with a food allergy must completely avoid an offending food, people with food intolerance can often eat some of the offending food without experiencing symptoms. "

"The foods that account for 90% of the allergic reactions in children are milk, eggs, peanuts, tree nuts (such as pecans, walnuts, almonds and cashews), soy and wheat. Most children outgrow their food allergies. However, an allergy to peanuts or tree nuts is seldom outgrown."

"Gluten-Sensitive Enteropathy (or Celiac Sprue) is a disorder also called gluten intolerance, yet it is not a true food intolerance but an abnormal response of the immune system to gluten. Severe damage to the intestinal lining occurs when gluten is eaten. Gluten is a protein found in oats, wheat, rye and barley. Diagnosis is confirmed by intestinal biopsy.
Complete avoidance of any food containing oats, wheat, rye or barley is the only way to treat this disorder and prevent symptoms. This condition is sometimes confused with wheat allergy."

as far as pain, I can only venture a guess: either sensitivity or allergy causes inflammation, which goes haywire in those whose skin, joint or vascular collagen is impaired by EDS? perhaps our pain receptors, called nociceptors, are triggered by skin, joint or vessel inflammation?

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Having been gluten free for 10 yrs now, I can readily say that I feel better in overall health since I removed it. On a side note, yogateach, oats in and of themselves do not contain gluten but actually absorb it by being processed in facilities that also process wheat, etc. You can find gluten free oats. In answer to your question, DeDeKay, with gluten, it is an all or nothing sort of thing. I agree with yogateach that you might be better off trying an elimination diet first before the drastic measures of removing gluten. However, in order to do an accurate elimination diet, you will need to remove all possible allergy causing foods for 4-6 wks and then, one by one add an item back into the diet to see if there is a reaction. If your daughter is old enough to handle it, have her just eat meats, vegetables and fruits. Remove eggs, dairy (which is mucus and inflammation causing) and the gluten grains out of her diet (and as much refined sugar as you can) for a month. Then add back one item (I would start with whatever she misses the most) every 3 days or so. When you add it back, look for any signs of an allergy: pain, swelling, hives, hyperactivity, lethargy, headache, stomach ache, diarrhea, etc. When people think of allergies, they only think of the basics, hives, itching and runny nose/sneezing but there are numerous other types of "allergic" reactions. When I did an elimination diet on my son, when I reintroduced wheat, the boy was climbing the walls and acted like he was on speed. He told me it felt like he had "bugs under his skin" (basically his skin was crawling). Even I was surprised at the reaction he had. Good luck in your adventure. :-D

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All I can say is what happens to me. I always had horrible stomach aches and fatigue after eating oats, wheat thins and graham crackers. I usually dont eat bread because I am very allergic to yeast. I have been IgG positive for oats, but not for wheat until last year. I had lost 40 pounds, became very B12 and Vit D deficient...extremely malnourished. My celiac labs(glutein tests) were all negative. I was in massive pain.(muscles, periferal neuropathy,tendons) I think B12 deficiency and Vit D deficiency always causes this to me. I was unable to balance on one foot. When my IgG test for wheat came back positive, I completely eliminated wheat from my diet. I quickly felt better. I started B12 injections.....I regained my 40 pounds. I still have chronic pain issues, but nothing compared to deaths doorstep last year. I now can tolerate some wheat. I also do not absorb my other meds if I eat my allergen foods. I'm different from many EDS'ers in that I tolerate corn very well. I may tolerate gluten, but not another protein found in wheat???. Other members of my family also do not tolerate barley. My experience with elimination diet is to try it for a few days faithfully (especially eliminating dairy and wheat) and see if you feel a thousand times better. Many do.

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Oh, oh, this is an interest of mine! Has anyone noticed that they did "fine" with gluten for a long time, but then after "triggered" (say, from a virus or intense stress), THEN they can't tolerate it? And perhaps they feel like there are a gazillion other things they can't tolerate, too?

This doesn't just hit EDS people -- but a lot of chronic illness. I am researching how inflammatory cytokines spit out by mast cells and the cells they recruit, make our guts, our vessels, and RATS, our blood brain barrier LEAKIER. So some nasty stuff goes where it shouldn't if you get my drift. These inflammatory cytokines can actually separate the endothelial cells of the gut, for example -- leaving little spaces for things to escape.

So, if we are leaky, the inflammatory cytokines try to increase in number, "thinking" that we are under attack by a foreign, bad substance. Many of these inflammatory cytokines cause PAIN. We can treat some of these inflammatory cytokines, but a better tact, in by book anyway, is to try to seal off the endothelium again, THEN treat the inflammatory cytokines. Perhaps then, we won't be as sensitive again.

That's my plan! :)

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Dr D., prior to identifying what I react to in my diet, I was reacting to sooo many things; yes, leaky gut, and leaky brain barrier = sick, sick, sick! I notice my "triggering threshold" is lowered, therefore worse, in spring and fall; perhaps overtaxed with addition of environmental allergens on top of battling with reactive substances permeating the endothelium, entering the bloodstream and creating havoc by being where they don't belong. so yes, heal the endothelium/leaky gut then maybe the body won't want to send out the inflammatory cytokines, the brain is not under attack and the loop is broken.

as for showinng negative on lab tests for celiac, if one has eleminated gluten from their diet for an extended period of time, while the tests come back negative, the individual can still be malabsorbing and technically have celiac; that would be a false negative on the tests. This is the reason my PCP, despite having evidence on a CT showing malabsorption, still suggests I don't pursue biopsy for celiac, just do what I need to do until I can't manage it the way I have stumbled on: not eating wheat/dairy (for me).

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You could be reacting to tyramine or histamines in your diet. These make dysautonomia worse. Often if you are eating gluten free, preservative free you are also eating tyramine free. There is a lot of overlap. Maybe check out www.fdnow.org for a tyramine free diet and explanation of how tyramine is bad news for dysautonomia. It doesn't matter the cause of dysautonomia, low tyramine helps. Low tyramine is suggested for migraine sufferers, dysautonomia involves vascular vessels and hence migraines.

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Dr D

I did try the Zantac until I ran out. I noticed that I could tolerate foods that before would bring on a headache eg: red wine. This is probably what I react to the strongest. However I discontinued it as it can bring about Vit B12 deficiency, and eosinophilic oesophagitis. When I discontinued it I became very ill, nausea to point of vomiting, headache. My hypermobile grandfather had pernicious anaemia.

I improved on an elimination/'anti-inflammatory' diet after 3 days, as did my niece. Eating gluten free, preservative free, no "numbers" on label, unprocessed, low fat, high fish diet helped.

I think I am intolerant to yeast and moulds. Aspergillus mould makes me sneeze. It is a common contaminant on bacterial growth media, and I would open plates with it on in a fume cupboard if I could. I think even the yeast in bread makes me worse. Gluten free and tyramine free diets are virtually the same. Except with one, you can eat wheat so long as it is not accompanied by yeast or has not been fermented in some way [usually by yeast]. Maybe try the low tyramine [no yeast] diet then later after a break try gluten-free, and keep records of both to compare.

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PS. RAST tests for grains was negative. This was after I ate elimination diet, had a break, ate 4 slices a day of ordinary bread for months and then was RAST tested for grains and caeliac disease tested. Both were negative. That is why I suspect the problem is yeast and moulds.

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There is a huge difference between food allergy and food intolerance and what is called toxic food syndrome. I know it sounds crazy and I was skeptical however - you know there is always that however - the more I looked into it the more it made sense.

I had my daughter seen by so many physicians for various reasons. Finally after months of diaries and food logs - her dietician mentioned toxic food syndrome and suggested that we speak to her primary care doctor about food intolerance testing. She gave us the name of a rep - Missy Dancy - from Immunolabs.


We had her blood work done and it came up with 30 different food intolerances. Mind you they are not allergies - but items that your body will act adversly too. They rate foods on a 4 point scale, 4 being the worst. You really need to work with a dietician - as some items appear as an intolerance but are linked to other foods. Since removing level 4's - she is like a whole new person!

I tested and found we had similar inolerances - but mine showed bakers and brewers yeast- by removing the yeast items - I feel 100% better. I am only a few weeks in and have not removed all level 4 as yet.

There is a really great magazine that deal specifically with food allergy, intolerances etc - and has great resources - they have a super website : www.livingwithout.com they deal mostly with gluten - but check it out.

I hope you found this helpful.

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Though I also do not know why, I know it helps me. I have HEDS and dysautonomia. When I cut out gluten, dairy, eggs, sugar, & caffeine I feel soo much better! Pain is less, swelling is less, headaches, dizziness, nausea, light-headedness is less etc. I function better. Over the holidays I ate stuff I shouldn't, and I had headaches everyday, dizziness & nausea and some stomach pain too. I stopped eating it again and feel better. It's hard, but it's worth it. The hardest challenge is the sugar for me. Natural sugars are better, but too much, I'm finding still may trigger headaches. I'm a sugar addict, so it's a major challenge. I'm discovering nature's best sugar, figs, apples, dried fruit etc. I tend to eat very little meat as well more out of lifestyle preference but I have noticed a slight benefit if I avoid it. My one question still is corn. I believe it makes me in more pain and more fatigued but I'm not ready to give it up or try without. Good luck! ...Also, I did an elimination diet and it was the best way. When I introduced it back in, I had stomach pain and more pain, headaches etc. You can get tested, but trying it out is the best way in my opinion.

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I believe EDSers are prone to having "leaky guts" (by way of weak/porous collagen in the GI tract). Gluten peptides, and casein from milk, and many other food proteins make their way into the bloodstream and eventually get deposited in various parts of the body, namely the joints, muscles and brain/CNS. Once in the bloodstream, the proteins are presented to the immune system, which determines whether the protein is a foreign invader or not. Then the immune system mounts an attack, which can range from full-blown celiac, to mild GI distress and/or joint pain, etc. That's why gluten sensitive people have such varying symptoms. For some it's only GI, for many it's joint pain, for others it's nervous system disturbances, etc. I had an autoimmune flare after the birth of my first child (my trigger), mostly just a long-term itchy rash, but it was then that multiple auto-antibodies were discovered. Celiac bloodwork was negative then. 5 years later, my "IBS" turned into unrelenting diarrhea and I was diagnosed with Microscopic/Lymphocitic Colitis (too many T-Lymphocytes in the colonic mucosa). I also developed worsening hip and low back pain. I finally discovered the diet connection ordered stool antibody testing and celiac gene testing from Enterolab.com (about $500). I highly recommend it. I have been gluten and dairy free, and mostly soy free, for almost 2 years, and I'm nearly in full remission. My hip and back pains disappeared almost overnight when I cut gluten and dairy. If I accidentally eat them, the pains immediately come back -- it's bizarre. Of course the diarrhea comes back with a vengeance too. I think a GF/DF should be REQUIRED for anyone with fibromyalgia and/or autoimmune diseases involving GI symptoms and/or joint pain. It's the only way we can help ourselves without harmful medications. Incidentally, many of my other presumed food "intolerances" turned out to be nothing once gluten and dairy were out of my system. I can eat nightshades, dark chocolate, greasy food, plenty of meat, spices, etc. with no trouble now.

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WOW, this article sent by a friend will really make you think! Could my celiac gene and long-standing "asymptomatic" gluten intolerance be the cause of aggravating factor in my HEDS??

Many features of connective tissue disorders overlap with each other and with other disorders thought to have unique genetic causes. Geneticists believe that most of the connective tissue disorders are caused solely by single genes unrelated to nutrition and unrelated to each other, but are they? What is commonly believed is not necessarily what is true.

There is an ever growing body of evidence that nutrition is a major factor in many inherited disorders once thought to be caused by genes alone. This seems to be especially true for inherited connective tissue disorders

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wow ! zizzy, after a brief look around, I emphatically agree, this link to sandy simmonds' blog echoes what I have learned (but she is still standing and still has the time and money to write about it :) when i took a look at her refrerence books, I thought "here is a twin who has tread the same path" ! I have read and used them all ... Gittelman for dietary, Back Care Basics for back care, Stile's Structural Yoga Therapy for scoliosis, on and on. (anyone out there want to buy them from me? I am broke)
my life became the pursuit of health and wellness and alleviation of pain and dysfunction when I woke up and realized that I was not crazy, that I was not improving on the mainstream treatments, I didn't need or want another psychopharmaceutical, more steroids, more anti-inflammatories, yet there have to be answers out there... I need to learn the proper care and feeding of this unique body I've been given. . .but it does take lots of money and time and commitment to non-mainstream lifestyle changes to pursue integrated health.

This seems to be a good resource, so thanks for the link, zizzy!

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@ yogateach: Perhaps the answer is right under our noses and not so difficult to ascertain after all.


To all:
As many of you might know, many have had suspicion of or a dx of MS only to have it dismissed later when the EDS dx emerges. Dr. D is now seeing a common thread between the two with CCVSI. Keep in mind that although the nerves themselves do NOT contain collegen, 20% of the myelin sheath does (the covering of nerves ... which is what breaks down in MS).

Perhaps we just have to dump our cultural ways of eating. Perhaps we need to trust our bodies and give them what they need.

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