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

 

 

[lizzie42]

Thank you! This is helpful. I actually read her results wrong. It looks like her tTG test was just higher than the test goes (it only goes up to 100 and hers was higher than that so it just said greater than 100 and 0-3 would have been normal). And the 109 was a different iga test (immunoglobulin A, Qn, Serum). The ema was just a straight positive. I think I'll just move forward with gluten-free for her and have the other kids and us still eat some till our tests next week).

How do you completely eliminate gluten from the kitchen? Like the flour shelf, I wiped it all down and got rid of flour but what if one tiny speck of flour got in something, does that derail everything? Is the dishwasher good enough to clean baking bowls, etc? Luckily she loves larabars and most fruits and veggies and rice. Once the kitchen is safe home will be fine. It all makes sense now why she hates waffles and pancakes and always asks for rice for breakfast.

[Jsingh]

38 minutes ago, lizzie42 said:

Thank you! This is helpful. I actually read her results wrong. It looks like her tTG test was just higher than the test goes (it only goes up to 100 and hers was higher than that so it just said greater than 100 and 0-3 would have been normal). And the 109 was a different iga test (immunoglobulin A, Qn, Serum). The ema was just a straight positive. I think I'll just move forward with gluten-free for her and have the other kids and us still eat some till our tests next week).

How do you completely eliminate gluten from the kitchen? Like the flour shelf, I wiped it all down and got rid of flour but what if one tiny speck of flour got in something, does that derail everything? Is the dishwasher good enough to clean baking bowls, etc? Luckily she loves larabars and most fruits and veggies and rice. Once the kitchen is safe home will be fine. It all makes sense now why she hates waffles and pancakes and always asks for rice for breakfast.

Hi,

I am mother of a six year old who was organized a year ago when she was fine. 
 

to answer your question about removing gluten from your kitchen- it will be a mammoth task but your entire kitchen has to be free of gluten for her to be safe. Now I’ve learnt from this forum and others that different celiac patients show different level sensitivities to exposure to gluten. My daughter is extremely sensitive. And her sensitivities have only gone up in the months since the diagnosis.

if there is anything that I can tell you from my experience for sure is that there is a learning curve no matter how careful are. It’s still a process for us- and to think of it that that after seeing her change as a person within three days of changing her diet I thought the job was done. I was so wrong. 
 

We opted for no biopsy because the new guidelines in the US follows the European guidelines of no biopsy necessary in children if numbers are greater than 10 times the Normal among with other two positive tests. My daughters number were also greater then 100 and they also had EMA done. 

My beast wishes to you. I will not lie it’s not hard to take care of a kid with celiac, but once she goes gluten-free and you see your child flourish despite the ups and downs of contamination here and there, it’ll give you enough strength. 

[lizzie42]

Thank you! That's so encouraging. We are planning to go 100 percent gluten-free at home apart from continuing to feed the other kids gluten till they get their tests. I assume that if you have zero gluten in the kitchen eventually cross contamination ends! It does seem overwhelming at first! 

 

Once they've been gluten free for awhile is it obvious when they get exposed on accident? She's improved a lot in the last few weeks even on gluten since doubling her iron dose. Her ferritin has come up so I assume that's why. But she still has the huge meltdowns some days and it makes sense now. 

[trents]

I do not think that foregoing the biopsy when the ttg-iga is 10x normal has yet been adopted as a universal protocol in the U.S. We are not quite as far along on that one as they are in Europe I believe. One option is to trial a gluten free diet and then attempt a "gluten challenge" later on if for some reason it becomes important to distinguish between having celiac disease and NCGS (Non Celiac Gluten Sensitivity). Although, it is often the case that once you have been gluten free for a significant period, returning to gluten brings more violent reactions.

Immunoglobulin A, Qn, Serum is not a test for celiac disease for celiac per se but is a test for IGA deficiency. If someone is IGA deficient, IGA test scores will be artificially low and cannot be trusted. Your daughter is not IGA deficient. Yes, the EMA doesn't get a score apart from being just positive or negative.

Unless your daughter is a super sensitive celiac, the biggest challenges will not be keeping her safe in the home but rather away from home. Eating out is the biggest challenge to celiacs because you have not much control over how food is handled back in the kitchen. You can order naturally free gluten free foods but it may be cooked in pots and pans and on grills that are also being used for wheated things.

This may be helpful, though some suggest measures in this article may be overkill unless you are super sensitive: 

 

[Scott Adams]

I agree with @trents and in the Europe the 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.

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!  

 

[lizzie42]

Thank you! Hers were much higher than 10x plus positive ema. Plus anemia, rash, low vitamin d. The GI appointment isn't till middle of April but the pediatrician said to go ahead and stop gluten as there is no question. We went ahead and she hasn't had gluten for about 36 hours. This morning her rash wasn't blistery for the first morning since it started. 

[trents]

The blistery rash is almost certainly dermatitis herpetiformis, a classic indicator of celaic disease and for which celiac disease is the only known cause. There really isn't much doubt that she has celiac disease given all the evidence so far.

[lizzie42]

Thank you for all your help! We agreed with the pediatrician that if further testing is necessary we will reintroduce. Given all the evidence I would never put her out for an endoscopy even if recommended by the GI.  So today I'm purging the kitchen and cleaning.

[Scott Adams]

To me it seems like a slam dunk diagnosis, and the actual confirmation should be recovery on a gluten-free diet. If her symptoms improve on the diet, it would be final confirmation that she has celiac disease--and likely DH as well.

[Jsingh]

On 3/16/2025 at 12:37 PM, lizzie42 said:

Thank you! That's so encouraging. We are planning to go 100 percent gluten-free at home apart from continuing to feed the other kids gluten till they get their tests. I assume that if you have zero gluten in the kitchen eventually cross contamination ends! It does seem overwhelming at first! 

 

Once they've been gluten free for awhile is it obvious when they get exposed on accident? She's improved a lot in the last few weeks even on gluten since doubling her iron dose. Her ferritin has come up so I assume that's why. But she still has the huge meltdowns some days and it makes sense now. 

My daughter showed great improvement in the following weeks of total gluten-free. Then even slightest of contamination is so called gluten-free foods like honey, cooking oil, ketchup, maple syrup, etc. we are at a point now that we’ve stopped everything that comes out of a packet. EVERYTHING. In her case it’s either she is very super sensitive and might remain this way all her life. Or, it could be as others have said that one a you go gluten-free body become super sensitive to contamination, which may go away with time as the gut heals. We’ll see how it goes for her. We’ve been gluten-free 14 months now. 
 

we haven’t been to restaurants every since her diagnosis and we do not miss it. We just go picnics. Also it’s easier for her since she’s only child and we don’t have to account for other kids. 

[Beverage]

The doc that diagnosed me emphasized that the ears, eyes, nose, and mouth all drain to the same place.

He said, besides obviously not eating foods containing gluten, to eliminate flours from my world immediately.

If gluten flour is used, it gets into the air, and would be breathed in through the nose, which drains down to the stomach. Also, if it gets into the air, it settles on everything, which would be very difficult to clean. So you are correct to be concerned about flour in the kitchen.

Some people may argue this isn't necessary, but it was my doc's advice, which was 10 years ago. My step granddaughter was diagnosed with celiacs last year and she got the same advice at a post-diagnosis nutritionist consultation in Seattle.