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Stressed Out--What Do I Do Next?
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So, if you read my other post you would be aware that we took our 6 1/2 year old for a blood test to check for celiac disease over Christmas holidays. His results were as follows:

tTG IgA: 25 HI (weak positive 20 -30 units)

GLIADIN AS: IgA: 4 (<20 negative)

GLIADIN AB: IgG: 11 (<20 negative)

Background history is that I have "diagnosed undiagnosed" Celiac disease (I got so sick from the gluten challenge to prep for further testing (i had cut wheat out for about 8 months prior to bloodwork) that I was told by the dr to stop. At that time I had never heard of Celiac disease, but when have experienced cc i have suffered so severely that there is NO doubt what the issue is (chronic constipation, stomach bloating-- I literally look 6 or 7 months pregnant, I fall asleep with 20 minutes and cannot be woken up, etc).

k

Fast forward to now, we had my youngest tested because he has been having stomach pain when he eats, and I was sure his test would come back negativ because he wasn't having diarrhea (as far as i knew i wad an anomaly). Well, after his test coming back weak positive I did some research and reached out on this site. i found some great info and got some great advice. I went back to the dr who had ordered the same test to be done again in 3 weeks and told us to boost his gluten intake (he doesn't eat as much as the average child because I make a lot of gluten free meals because of myself. Anyway in the 3 weeks of challenge he lost 4 pounds. The dr is pretty sure it is Celiac disease (he said between the bloodwork--which he said is 95% accurate for Celiac--and the weightloss and stomach pain we basically just proved that he has it).

He is boking us in with a Ped. GI (no word yet as to when appt will be), and he just went for his repeat bloodwork.

I guess my biggest concern is what if his tests come back negative (bloodwork and scope/biopsy)

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Sorry something went wrong with the rest of my post...

So, if testing comes back negative, what do I do?

Has anyone had a child with a weak positive tTG and negative on all other bloodwork and have a positive biopsy?

And if the only thing slightly elevated is the tTG and the dr is pretty darn sure it is nothing else, would you raise your child gluten free? Would you take him off of gluten and then reintroduce him to it in a month?

Dr says it should take 3 to 6 months to get in to see the Ped. GI and that we should take him off of gluten until we have a better idea of how far off the scope will be......

What are your thoughts?

TIA :)

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My kids tested negative but I took them off gluten anyways. 2/3 of them have shown some real health improvements on a gluten-free diet. I guess I figure, what could it hurt? They now eat more whole foods and have all grown quite a bit since going gluten-free. It's an inconvenience for me as I have to pack their food everywhere we go, but they feel better...

I would make your son gluten-free for a good 6 months if I was you. If there are zero improvements, then let him eat it again but if there are any improvements at all, why let him eat something than hurts him?

Good luck. :)

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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