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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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    • No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
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    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
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