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New To Forums & Idea Of Possible Celiac


dultimate1

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dultimate1 Newbie

I am new to the forums here and new to the whole idea that I may have Celiac disease. I have been ill all my life and it started when I was a toddler with severe stomach pain and stomach acid coming up in my mouth. Needless to say..after years of being ill I am now to the point of being disabled and can barely function. There are times in the recent past that I layed down at night to go to sleep and really wondered if I would wake the following morning. I have so many symptoms of this disease that its ridiculous that the doctors didn't check me for Celiac sooner. I was actually the one that discovered the possiblity, which is sad. I will post later with all my symptoms over the years and about what age I was when I first noticed them, in hopes it will get some of my questions answered and maybe help someone else that is like me. I had to blood test done for Celiac, but it came back negative, which is something I sort of expected since I have been ill with this for so long that my body no longer reacts as it should enough to show up on bloodwork. I did get my surgeon to set up an EGD, since I have to have that and the lower scope done on a regular basis, anyway, due to all the trouble I have with my digestive system. Anway, I will post the findings of the biopsies that were taken during my EGD. From what I understand, the surgeon found several bad areas and took a biopsy of each.

Tell I have more time to write......may you all be well.


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ang1e0251 Contributor

Your bloodwork could be negative if you are IGA deficient. If you want to know, you could post the results along with the lab's parameters here for someone to look at.

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    • 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.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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