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can Celiac stomach pain start up again after years of being gluten-free?


Donna-1

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Donna-1 Rookie
(edited)

I've done great for 7 years; diagnosed with Celiac Disease 7 yrs ago. Once I dedicated myself to being totally gluten-free and oats-free (at least the last 3 yrs) I finally felt completely well!!!  Now some of the old familiar symptoms have returned.  Mainly high upper abdominal and mid right abdominal pain.  What have I done?  I am so careful and wouldn't knowingly consume wheat, barley, rye or oats for ANY reason.  I'm not having the diarrhea I used to, but having the bloating and gas and PAIN.  I had a series of the usual blood tests: CBC, thyroid, metabolic panel, and others and everything came back "normal."  My doctor is adamant it is just somatic complaints due to depression and anxiety.  I say it is the other way around: depression and anxiety because of the celiac disease.  I will do anything to stop this pain.  Will adopting a diet of a few simple non-gluten foods get me back on track?

Edited by Donna-1
forgot an important part

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NNowak Collaborator

There are a number of things that can cause that pain. Keep seeking answers until you find a professional that will listen and give you confidence you are being cared for properly.  A gastroenterologist should address your health issues as primary care physicians are not trained in this area. 
 

Good luck. 

cyclinglady Grand Master

This is my experience.  In a nutshell, five years after my diagnosis,  I had abdominal pain, GERD, etc.  My DGP IgA was very elevated.   I refused to do a repeat endoscopy as suggested by my GI.  Instead, I opted for the Fasano diet.  But after a few months, the diet was not helping.  I finally caved in (about one year from developing various GI symptoms) and had the repeat endoscopy which showed healthy villi (he went in very deep), but revealed Chronic autoimmune gastritis which is often affiliated with Hashimoto’s (which I have).  I learned that not all symptoms are due to active celiac disease and that the antibodies testing is good for diagnosing, but not so good for dietary compliance.  

Get to your GI.  

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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