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pricklypear1971 Community Regular

I always thought I was a little weird :)

We haven't done any genetic marker testing on anyone else. I'm not really sure it would be worth it. I only did it because the GI doc said no to Celiac and he wanted it to rule it out further. I guess in his mind it gave him one more reason to say no. Thanks for adding the links, but they were greek to me! My husband was diagnosed as Celiac as a toddler, but until it was mentioned for me, we didn't know you don't outgrow it. His tests came back negative, but he is gluten free with me.

Private message skylark with a link to your results. Ask her to look at them.

So, your daughter was dx'ed by bloodwork/biopsy - and she probably has her Dad's genes in the mix (if they ever look).

Many ai diseases have a positive reaction to gluten-free, along with celiac disease. I don't think the particular Celiac test you were + on has reasons for false + (it's ver specific). but, keep googling about that test and you may find it. Or, you can be Celiac. The genes they look for are the most common in the west - not the world - and Celiac research in other populations are showing different gene involvements. Plus, the gene itself isn't the deciding factor since not all people with the genes have celiac disease - something activates them - and they don't know what it is or how to test for it.

Good news - gluten-free helps you. So by all means keep doing it. And if your hematologist dx'ed you celiac don't fight it (especially since the diet helps) unless other issues keep popping up. And then, it may be "in addition to" issues re: Celiac.


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    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
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      Hello, I'm back with a second post. The first time I wrote, I mentioned the possibility that my symptoms were related to gluten. I did a genetic test in which I resulted to have the predisposition, but the results of my blood test were all negative without IgA deficiency. My doctor suggested that it was necessary to do a biopsy to rule out Celiac Disease. However, he said, because of my family history and my symptoms were strongly related to gluten, it was very possible that my Celiac Disease is developing and my antibodies may become positive in the future.  I tried to continue the gluten challenge for the biopsy, around 2-3 g of gluten per day, but it was enough to make me feel worse each passing day. I started developing anemia and other mild nutritional deficiencies, and it was really affecting my daily life. I'm a student and exams are coming up, so my doctor suggests me to strictly remove gluten until I feel better so I could study without problems until I could do the gluten challenge when I come back home for holidays. Since going gluten free, I feel like a completely different person. My mind is clearer, I have no stomach pain during the day, and even my nails improved within just two weeks. It could also be Non-Celiac Gluten Sensitivity, but of course I’ll need the biopsy to know for sure. I was wondering, has anyone else had negative blood tests at first and later tested positive? And has anyone struggled with the gluten challenge because of symptoms?
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