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ironictruth

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ironictruth Proficient

Newbie here. I have the DQ2 gene, a sibling with confirmed celiac, and a nephew with the gene and a wheat allergy. I went gluten free for 7 months then did 7 weeks of a challenge before my recent biopsy. I will not get into my symptoms. However, my sibling never had any abnormal bloodwork but the doc could see damage during the endoscopy and the biopsy confirmed it. Plus he has the gene obviously and dropped weight crazy fast.

My doc said my endo looked normal but still waiting on the biopsy. 

So, here is my question: All of my bloodwork (as with my sibling) was normal except the Deamidated Gliadin Abs, IgA which was weak positive at 21. This bloodwork was done only one week into eating gluten free last year. Though I was not a huge gluten eater on most days before.

My GI said the above test is confusing and not reliable. Does anyone know why? 

I am wondering if I did the biopsy too soon and it may not show damage. He took 4 samples. Right after the endo the doc said I should go gluten free regardless because of the gene and having a sibling with it but that I could "cheat" every now and then. But honestly, I would rather not comb over every package of food if the biopsy is normal and the weak positive bloodwork is not reliable. On the flipside, I also do not want to "cheat" and slowly poison myself either...


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frieze Community Regular

either do the diet or not, no cheating.  skip most packaged goods at first, no need to read labels.

cyclinglady Grand Master

You will know more when you get the biopsy report.  But....I am one of the rare patients, like you, who tested negative on everything BUT the DGP IGA.  My biopsy revealed a Marsh Stage IIIB (moderate to severe damage).  Anemia was my main symtom -- no tummy issues.  In all my research, it appears that toddlers can test this way, but I am old!  My GI doctors could not offer an explanation.   Follow-up testing is the same as only my DGP IGA can be elevated when I am exposed to gluten.   So, it was not a fluke during initial testing. 

Did you experience any symptoms during the challenge?  If not, I would be worried about cheating in the future.  After my dx, (anemia is what my doctor caught when I went for a routine colonoscopy and ended up doing the Endo too) , my vertabrae fractured doing nothing!  Yep, I had osteoporosis and I did not have a clue.  That Dx was actually more devastating than the celiac disease.  No more skiing or  skating for me.  I did get back on my bike after taking a year off.   It is risky but it is worth it!  

 

ironictruth Proficient

Sorry about your diagnosis. That is awful, especially since you sound very active.  I did get symptoms on and off at first. My first encounter with gluten during the challenge made me feel drugged within seconds. That drugged feeling would happen a lot earlier on, but it seemed to go away. Or I just got used to it. There were days when everything in my system was emptied in several trips within an hour of waking up, then I would have a couple of normal days. The last two weeks of the challenge I was starting to feel really funny though, like out of my body, and I started to get pain in my chest and throat which did not feel like heartburn. My belly looks more pronounced then normal. It made me very anxious. A week off of gluten now and the chest and throat pain are almost totally gone. 

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