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Mystery Gi Problems In 3 Year Old


browniebite

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browniebite Newbie

Is it possible to still have celiac disease after a negative TRANSGLUTAMINASE IGA AB and normal total IGA?   my 3 year old soon has had severe constipation, practically since birth (he was on formula), and we are down to giving him mineral oil enemas just about everyday because we can't figure out what is wrong with him. He is below the 3rd percentile for weight and isn't gaining the way he should be.  He has been at 26 lbs for about the last 8 months.  His stomach is always distended, even with the enemas, and he is very gassy.  He takes miralax, senna, and enemas.  He was been hospitalized twice for disimpactions.  They also found eosinophils in his colon.  We have cut out his other food allergies - milk,corn,cinammon,garlic,sesame,and peanuts, but have seen no improvement.  It seems like it's getting worse.  I am gluten sensitive but have a negative blood test for celiac.  If anyone can offer any advice I'd appreciate it!  Thank you :)   


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anand Newbie

Please do a gene test for celiac...a negative means negative for celiac , while a positive means one has the gene and not necessarily the disease. The gene test can be done through a cheek swab....like from this lab....

Open Original Shared Link

Michael Briggs Newbie

Has he been tested for low stomach acid, or low enzyme production? Low levels of those can slow digestion, as week as promoting small intestinal bacterial overgrowth, which can cause the distention.

Have you tried giving him enzymes and betaine HCl, or digestive bitters to promote production of stomach acid and enzymes? See Open Original Shared Link

greenbeanie Enthusiast

Have you tried probiotics? My daughter has celiac and had positive blood tests and biopsy, but my celiac tests were negative, and probiotics have helped both of us tremendously. She's almost five and has been taking probiotics daily since her diagnosis last June. She had a very distended tummy before, and it still does stick out quite a bit after she eats dairy sometimes - but then she poops a lot and the tummy goes back down. I sometimes give her Cultrelle children's chewables and sometimes give her an adult flavorless powder packet that I mix with juice. Both are dairy free as well as gluten free. Within an hour she always poops - without fail! She was not constipated before, but her stools had always been mushy and sticky. Now they are firm and solid. Obviously a lot of that has to do with healing on a gluten free diet too, but if I stop the probiotics her stools get yucky again within a few days. So the probiotics definitely seem to be doing something powerful, over and above the diet.

I'll spare you the details, but my own experience with probiotics has been similarly positive. I am thin but used to look like I was six months pregnant after eating, and my bloating went away too. I have also been strictly gluten free since last summer, though i don't have a clear diagnosis myself - but, like my daughter, my stomach bloats right back up if I stop the probiotics. It's puzzling, too, because I've only had antibiotics a few times in my life, and I eat very little sugar, so there's no apparent reason my gut flora should be out of whack. Anyhow, it's worth a try.

Oh, and i just saw that this was your first post. Welcome to the forum!

browniebite Newbie

He is on creon enzyme and takes Florastor probiotics daily. He also takes fiber supplements. He has had two colonoscopies with biopsies and a barium enema. Next week he's seeing a surgeon for a full thickness rectal biopsy. No one can seem figure out what's wrong with him.

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    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
    • trents
      @JettaGirl, "Coeliac" is the British spelling of "celiac". Same disease. 
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