Testing in 15-month-old with little gluten exposure

[greenbeanie]

Hello! I used to post a lot but haven't for the past several years. I have a daughter with biopsy-confirmed celiac who tested high positives on every test on the panel at age 4, and who had symptoms since infancy. She's now 12. I have been diagnosed with celiac myself by a GI but my situation was less clear-cut (long story). My daughter and I have an entirely gluten-free home and have both been totally fine on a strict gluten-free diet with no problems for many years now. 

I now have a toddler who just turned 15 months old and is showing early signs of celiac. His doctor doesn't think it's necessary to do any test except tTG-IgA and total serum IgA. My concern is that he's only had a very small amount of gluten exposure in his entire life and has definitely not been eating a "normal, gluten-containing diet". I've followed current recommendations for feeding at-risk kids and did introduce wheat at the normal time but only gave him small amounts occasionally when he first began solids. Most days he had none, but occasionally he'd have a single wheat cracker (eaten outside the home). At first it seemed okay, but after a while he started vomiting after eating wheat sometimes and just getting really fussy other times. So I backed off for a while, but I knew he was going to start daycare in a toddler room that serves wheat snacks this fall. I don't want to restrict his diet unnecessarily, and I also feel like I need to know if he has celiac or just an intolerance because celiac would require precautions for Play-doh, finger paint, dry pasta art, and other wheat-containing things at daycare whereas a simple intolerance would mean we probably didn't have to worry about that sort of thing.

So six weeks ago I started feeding him wheat every day to see how he'd react. He's had a single small wheat teething biscuit every day for about 6 weeks, with no gluten exposure aside from that. His personality changed and he got very fussy, then had diarrhea multiple times every day for over a month. But he's teething and eating a variety of other foods that might just be hard for his immature digestive system to process. So while this does does very suggestive of celiac, it could be other things and I'm trying not to make any assumptions. Anyhow, I feel strongly that the DGP test should be run as well as tTG, but his doctor will not order it. The DGP was always more sensitive to smaller and shorter-term exposures when my daughter was young. I realize that there's conflicting research on this, and I've read many of the actual studies from medical journals. But he fits the exact profile where DGP seems especially likely to be helpful: family history, symptoms, only short-term gluten exposure but strong reaction to it. I also showed the doctor that the University of Chicago Celiac Center and the Celiac Disease Foundation recommend including DGP for kids under 2, but she was not swayed.

I have not taken him for the tTG blood draw yet because from other comments it sounds like his doctor would take a negative tTG as evidence that no further evaluation is needed and would just recommend assuming it's an intolerance and avoiding gluten without worrying about small exposures. I have little confidence that a negative tTG alone would be meaningful when he's only had such a small amount of gluten for six weeks and has never been on a "normal, gluten-containing diet." Obviously his small intake could produce false negatives on other tests too, but at least checking DGP would increase the chances of picking up an early problem, since it tends to increase and decrease more quickly.

Sorry for the long post, but my dilemma is: Do I take him for the tTG test now and hope that he's been eating enough gluten for it to be meaningful? Try to feed him a more normal amount of gluten for a few weeks, then take him for the test? He had two teething biscuits today(doubling his usual amount) and he's been crying almost non-stop all morning, despite pain medication in case it was just teething pain. I can't imagine subjecting him to this for weeks longer! But I really feel like it would be a mistake to assume it's just an intolerance and remove gluten from his diet if the tTG comes back negative at this point, as that would prevent us from ever getting a clear answer about whether we need to be careful about small exposures at daycare. Does anyone have experience with this, especially with testing a symptomatic toddler who's only had a very small amount of gluten? 

Edited to add: Signature info is outdated but I can't find a way to edit/remove it from this post. 

Edited September 5, 2021 by greenbeanie
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[frieze]

Get a new doc, one that does not have their head up their arse. 

[greenbeanie]

Unfortunately we live in a rural area (of the U.S.) with a severe shortage of primary care doctors, especially pediatricians. Most are not taking new patients or have a months-long wait. I may wait out the waiting lists and switch in the future, but for now we’re unable to see another doctor in the short term.

[Scott Adams]

I'm sorry to hear about the doctor not ordering the DGP test, which is considered more accurate in children. Perhaps you can find a doctor who will order it for you via a phone/video appointment, which is more common now due to the pandemic?

You also probably know that if you have celiac disease that your children have an ~44% chance of also having it, so if you can't get the tests you need it may be better to just go gluten-free, as the symptoms you've described are certainly consistent with either CD or non-celiac gluten sensitivity.