-
Welcome to Celiac.com!
You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.
-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
-
Get Celiac.com Updates:Support Our Content
-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Recent Activity
-
- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease4New diagnosis for 3 year old. Help!
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... -
- Deborah123 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Testing
My 5 year old had the blood test in August 2023, which came back negative. We just had a well-visit & he has lost weight over the last 6 months. My new Dr thinks its ENT issues causing his irritability & fatigue. We recently switched pediatricians, and I'm not sure how much to push for a celiac re-test. Obviously I'm not a Dr, but my gut... -
- trents replied to lizzie42's topic in Coping with Celiac Disease4New diagnosis for 3 year old. Help!
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... -
- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease4
New diagnosis for 3 year old. Help!
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... -
- trents replied to lizzie42's topic in Coping with Celiac Disease4
New diagnosis for 3 year old. Help!
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...
-
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Forum Statistics
-
Total Topics121.1k
-
Total Posts70.9k
-
-
Celiac.com Sponsor (A22):
-
Who's Online (See full list)
-
Celiac.com Sponsor (A21):
-
Upcoming Events
-
Posts
-
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. -
By Deborah123 · Posted
My 5 year old had the blood test in August 2023, which came back negative. We just had a well-visit & he has lost weight over the last 6 months. My new Dr thinks its ENT issues causing his irritability & fatigue. We recently switched pediatricians, and I'm not sure how much to push for a celiac re-test. Obviously I'm not a Dr, but my gut feeling here is to re-test. How common are false negatives & how much should I be pushing my Dr to prescribe a re-rest? -
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
-
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.
-
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.
-
Recommended Posts
Archived
This topic is now archived and is closed to further replies.