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Can celiac cause widespread pain??


Paula Andrews

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Paula Andrews Newbie

Hi! Did anyone experience severe body aches prior to being diagnosed?  Last year I suddenly experienced widespread pain, completely unexplained. After numerous tests with normal results I was diagnosed with fibromyalgia in August and started taking Cymbalta, which helped about 80%. Now other than pain, I did not have any additional fibromyalgia symptoms. 

  In the following months I started experiencing diarrhea, to the point where it was constant. In January I was diagnosed with celiac disease and microscopic colitis after having an endoscopy/colonoscopy. I've been gluten-free since that day and recently my pain level has dropped to ZERO.  I'm starting to wonder if I even have fibromyalgia, or if all of my symptoms were celiac and colitis.  I've seen several doctors and no one suggested this, but from what I'm reading it sounds possible.  The fact that I was diagnosed with two different diseases within a few months also seems odd. Has anyone else experienced all-over body aches with celiac?  And if so did the pain end after eliminating gluten?  Unfortunately I don't know anyone who has either celiac or fibromyalgia to talk to.


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Scott Adams Grand Master

Untreated celiac disease is associated with arthritis and other autoimmune diseases which can cause such pain. These categories have research articles on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/fibromyalgia-and-celiac-disease/

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/arthritis-and-celiac-disease/

Levi Apprentice
1 hour ago, Scott Adams said:

Untreated celiac disease is associated with arthritis and other autoimmune diseases which can cause such pain. These categories have research articles on this topic:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/fibromyalgia-and-celiac-disease/

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/arthritis-and-celiac-disease/

You can add Axonal Peripheral Neuropathy, Bone and Joints degeneration, Cataracts, Hypothyroidism, Gluten Bumps for those of us with dermatitis herpetiformis, and Malabsorption which contributes to so many other complications. Sadly though, other than gluten bumps all the aforementioned and many other autoimmune diseases, eventually, can and will take its toll on the body, even while maintaining 100% gluten free. Coeliac, just like all Autoimmune Diseases beget autoimmune diseases. It’s in the cards, and inevitable, just a matter of time when. I’m living Proof! 

Scott Adams Grand Master

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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
    • trents
      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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