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Could I Have Celiac Disease?


Staciemich

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Staciemich Newbie

I've always had stomach problems, but over the last two years they have escalated. After a horrible breakup with a boyfriend, I lost twenty pounds. I started getting horrible stomach problems, terrible gas, reflux, burning sensations. My diet had changed, but it was actually a more healthy diet full of fruits and veggies and grains. It's two years later, and while I'm emotionally healed, my body is still troubled. I have constant gas and bloating and burning. I haven't gained an ounce, have actually lost weight even though I've been eating a ton. I've noticed changes in my teeth and nails, and sometimes I have strange sensations in my legs and feet...like tingling. They often fall asleep when I sleep. I've also been lactose intolerant on and off since I was a baby. My regular doctor suspected gluten intolerance and sent me to a specialist who laughed at me and told me I wasn't sick unless I was vomitting. He did do an endoscopy which turned out fine. He basically told me it's just my body and to deal with it, suggesting it's just IBS. Could I have this disease? Should I pursue testing?


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gf4life Enthusiast

You may very well be gluten intolerant, but without the intestinal damage severe enough to back up the diagnosis, they won't call it celiac disease.

Your best bet would be to check out the testing at Open Original Shared Link . The tests there are senstitive enough to pick up gluten intolerance (or gluten sensitivity) in it's early stages before the intestines are very damaged.

I've been where you are at, as have many other on this board. I've been laughed at by doctors and treated like a hypochondriac. But I am gluten intolerant and I am now on my way to better health. Thank God for Enterolab!

God bless,

Mariann :)

Dwight Senne Rookie

A visual inspection with an endoscope may not always reveal Celiac. While there is normally some inflamation present, it is not always the case. Furthermore, any inflamation that may have been present could easily have been attributed to some other cause.

You did not mention if biopsy samples were taken during the endoscopy. This is still the only sure fire method of verifying a Celiac diagnosis. The vilous atrophy associated with Celiac disease is not detectable via the endoscope. Several biopsies must be taken for external microscopic examination.

You also did not mention if you had the Celiac panel blood test. I would recommend you convince your G.I. doctor to at least have that done, and if it comes back positive, you may need to either get a second opinion of the biopsy slides, of if none were taken, to have the endoscopy procedure repeated. If your G.I. is unwilling to cooperate, I suggest finding a new one.

Best wishes,

Dewey

Marion, IA

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    • captaincrab55
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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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