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- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease6New diagnosis for 3 year old. Help!
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... -
- Jsingh replied to lizzie42's topic in Coping with Celiac Disease6New diagnosis for 3 year old. Help!
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 t... -
- lizzie42 replied to lizzie42's topic in Coping with Celiac Disease6
New 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 Disease6New 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...
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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. -
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.
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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.
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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
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