New diagnosis for 3 year old. Help!

[lizzie42]

My 3yo was just diagnosed after months of iron supplements barely bringing up her ferritin. I say diagnosed but it's not official yet. Her tTG was 109, her ema was positive. Also she has a vitamin d deficiency in addition to the anemia. She also has the rash. It's been a rough road the last year and a half with her behavior and health and I'm relieved to have an answer. 

Is she going to have to have a biopsy with numbers like that? I want to just start gluten-free immediately but waiting to try and schedule with a pediatric GI doctor. It will have to be remote because there isn't one here. 

I hate having an answer but still feeding her gluten. 

Also, how can I help her rash? We've used aquaphor her whole life thinking it was eczema. It helps a bit but not as much as it should for eczema. 

I am a sourdough lover and make all our bread. Is there a such thing as gluten-free sourdough? At home I think the gluten-free will be no big deal. I make everything and the kids aren't really picky. I'm worried about when she starts school, eating at friends, etc. It's a little overwhelming! 

[trents]

Welcome to the forum, @lizzie42!

Can you also supply the reference range for that celiac antibody test? Each lab uses its own reference ranges for the celiac antibody tests so we can't comment otherwise until we know. And was that the TTG-IGA? There is also a TTG-IGG celiac antibody test. There is a growing tendency for physicians to forego the endoscopy/biopsy when the tTG-IGA score is quite high. In the UK the that is 10x the high end of the normal range but different docs here in the USA may have their own protocols and not all of them will bypass the endoscopy/biopsy regardless of the blood test score. I also think docs are generally reluctant to do scopes on small children.

The celiac rash is called dermatitis herpetiformis. There is a drug called Dapsone that is often effective for preventing dermatitis herpetiformis outbreaks but it is a strong med with some risks such that patients on it must be monitored for signs of liver stress? I think. I would be surprised if a doctor would prescribe it for a toddler. Other than that, the only thing I know of (besides eliminating gluten) that might help is a low iodine diet.

Yes, there are gluten free sourdough bread products available. My wife picked up at Costco last year but I wasn't very impressed with it. The sourdough taste and smell was barely noticeable.  

[lizzie42]

It was the tTG iga. The first test the range was that it needed to be under .05 and hers was .9

The repeat was a different lab and it said normal was 0-3 and hers was 109. The first test was part of a free study our DR recommended be celiac seemed unlikely at the time. Of course now it all comes together! So hers would have been 18x the upper limit on the first test and then even more on the second one if I'm doing the math right. The tests were a few months apart because it took a long time to get the first one back. 

[trents]

The EMA is an older test that isn't run so often any more. I think it was the original test developed to detect celiac disease. It's fairly expensive to run because, if I recall correctly, it requires mammalian organ tissue to execute. But when it is positive, it's a pretty safe bet that there is celiac disease. 

I would suggest discussing your options with your physician. One option would be to trial a gluten free diet for a few months and get her retested. If test scores decline significantly, that would be evidence that the high numbers were being caused by celiac disease and not something else. If you must proceed with an endoscopy/biopsy, push for getting one sooner than later and she would still need to be consuming gluten.

https://www.beyondceliac.org/research-news/when-blood-tests-results-are-highly-positive-a-biopsy-might-not-be-needed-to-diagnose-celiac-disease/

 

https://www.gastrojournal.org/article/S0016-5085(24)00123-9/fulltext