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Okay Sooo Do I Ahve celiac disease Or Am I Sick In Head?


VydorScope

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VydorScope Proficient

Been thinking about this as I layon the couch in pain and lets for a min (or 5 or how ever long this takes...) ingore the IgA score of 0...and the non-postive bisopy...

Few years back I was fat. Did not look fat, not realy... but had gained about 4-5 inches in the wiast, and was pushing on 200 pounds. I have a large frame so very few ppl would have called me fat... I alos had high BP, low engery, etc. So I decided to do somthing about it. I did a LOW CARB (ie low to zero gluten by its very nature) diet, and lost 40-50 pounds. Regained my engery, and lowered my BP. I attrubited all that to the wight loss. Well I want on a "somewhat" low carb "mantiance diet" to keep my wieght under control (ie added littel gluten back in my diet), and over time my health degraded again. Found out my son had celiac disease so we all went gluten-free (mainly for convience), and my health started to improve (but did not realy notice it at the time, was sooooo gradual), then one night was out on a date with my wife and we got some pizza (its rare treat around here!) and got sick right after it.

Then after that decided to try the gluten challenge for re-testing me. My engery fell off, stools got loose, got the pains back, etc! Took the test and it came back not-celiac disease, oh wait we ingoring that... umm okay well then when gluten-free for a bit like 2 weeks, and then one sunday ate some gluten (little cakes and things at a church event), and that night had hamburger with a bun. 12-15 hours AFTER eating the cake I get all the old junk back, pain, etc etc.

SoooOOooOooOoOoOO if we ingore the nice objective tests, does that sound like celiac disease or am I sick in the head again? :huh:

I am very sick of being sick! :(


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Guest nini

Vincent... I think you already know the answer to this my dear... Celiac is Genetic... Does your wife have it??? If not, then the most likely source is you. Based on your positive dietary response and subsequent negative response to being glutened, I would say that definitively shows that at the very least you are Gluten Intolerant and that is the main source of a lot of your problems. Even the experts are aware that the testing is still in developing stages, they don't have all the testing down. And no two experts ever seem to even agree on the standard for diagnosis. Listen to what your body is telling you.

I went through what you are going through. A friend told me she thought I had Celiac 6 or 7 years ago... I didn't listen. sortof. I kindof tried the diet, it kindof worked, I went back off of it... 2 miscarriages, life threatening pregnancy (very high blood pressure) and subsequent deterioration of health before ALMOST DYING before the Dr.s figured out what was wrong with me. Celiac. The very thing my friend had told me about 4 or 5 years earlier... Go Figure.

ianm Apprentice

The dietary response you have experienced is all I would need to know. I have never been tested because it is just so obvious that gluten is the problem. Since you son has it and celiac disease is genetic then that is another sign. You know what needs to be done and your body, not a medical test is telling you all that you really need to know.

tarnalberry Community Regular

Listen to your body. Celiac or not, you need to avoid the stuff! :-)

VydorScope Proficient

Reviewing this thread this am a few thoughts struck me...

1) My son did not show postive on the IgA scale either, making it likly we are both IgA deficent, and if the <insert not nice adjactives here> insurace company would allow the other tests I would test postive.

2) I have celiac disease. If I can get the ELISA test covered I will check for OTHER things, but no way am I going back on gluten for it! :o

3) I am only slighly hurt that this has not been pin'd yet :);)

The thing that bothers me a bit is... I am a son of a 100% Italian father, whose parents came over from Italy as childern via Elis Island. I ate ALOT of pasta and pizza growing up. I mean ALOT. It used to make up, prbly 75% of my diet! I never had problems like this till 3 or 4 years ago??? Thats one reason why I have been so hesitant on beliveing the celiac disease would fit me.

jerseyangel Proficient

Vincent--I'm glad you are going to keep on being gluten-free. Hopefully, you can get your tests for other possible sensitivites, but you can and will get better by being gluten-free. As you heal from the gluten, I wouldn't be surprised if the other sensitivites become more obvious and you can omit them and see how you do. After I was gluten-free for a while, thats what happened with me. I became aware that corn, for example, was a problem. Never realized it before, I guess because the gluten was causing so much trouble. I also really identified with your Italian history--my mom's mom came over from Italy when she was 4. My dad's dad also came over as a child. Both of their spouses are Italian.. We had pasta every Sunday of my life as a kid as well as bread salad, homemade soup w/ pasta--it was in everything! I always had a sensitive stomach, but my Celiac didn't really kick in until 2 years ago.

jenvan Collaborator

I agree...sometimes things can't be 'conventionally' confirmed...but if your body hates gluten, that's all you need to know.


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    • trents
      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
    • MicG
      Test results as follows: Deamidated Gliadin Abs, lgA 40 H (normal range 0-19) Deamidated Gliadin Abs, IgG 4 (0-19) t-Transglutaminase (tTG) IgA <2 (0-3) t-Transglutaminase (tTG) IgG <2 (0-5) Endomysial Antibody IgA Negative (Negative) Immunoglobulin A, Qn, Serum 535 H (87-352) Do I have celiac?
    • catnapt
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