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non celiac gluten sensitivity

mjroda

By mjroda
in Coping with Celiac Disease

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mjroda Newbie
mjroda
Posted

My son has 4y. at 2y even the blood analises come negative for transglutaminases he had short stature, his teeth were small, got joint pain, had anemia, low vitamin A and low vitamin d,  his speech was difficult to understand. The doctors said "well he has to eat more fat and give him spinach and red meat..." I've made that but he started to feel bad with fat...

Fortunatly foud a naturopath that made fezes analises that found disbiose and other values of bowel inflamation, his liver was a bit fat and we started an anti inflammatory diet- no gluten, no laticinios- started "dr roland candida yeast ", started probiotics, l-glutamine to seal his bowel, vitamins... in a few months he started do speak more clear, was less shy, gain weight, grew more, his joiny pain desapear, his hair grew more...

but in my mind i had to have a positive blood test, so after all this... i gave him gluten for 5 months... the blood test were still negative... in does months he lost weight, his speech was less clear, it started to grow white hair (only 2 but...) :o!  his joint pain came again... well...now we've started all over again... and this time i wont go back again 😕 

i´ve read that biopsy for gluten sensitivity its not an option because it doesnt damage your bowel...so by all this simptoms i suppose my son has celiac disease... do i really need to have an ok from a gastro doctor...? need to make a biopsy in a year or so... ? just asking... does he need this...

Greetings from Portugal

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Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! 

So the difficult thing about gluten sensitivity is that there are two main types: 1) celiac disease, which ~1% of the population has, and you can test for it, usually with a TTG blood test; and 2) non-celiac gluten sensitivity, which is the tricky one, because there is no current test for it, and possibly ~12% of the population has. 

To me it sounds like he has non-celiac gluten sensitivity, and you've already done the basic test for it, which is going gluten-free and seeing his symptoms improve, then going back to gluten, and seeing them come back. I would keep him gluten-free.

mjroda Newbie
mjroda
Posted
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thank you. yes i think is the best. hoping for good results again. thank you.

 

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      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
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