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- cristiana replied to tiffanygosci's topic in Introduce Yourself / Share Stuff2Celiac support is hard to find
Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be,... -
- cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4
Newly diagnosed mam to coeliac 11 year old
You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy. Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter... -
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- tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff2Celiac support is hard to find
EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area. -
- trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs1Help understand results
Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered... -
- mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs1Help understand results
For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful...
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Hi @tiffanygosci Well done for reaching out, fantastic you have found this forum. It sounds like you are managing the diet well, it can be overwhelming at first, but it will get easier. I wonder if you have seen the short film 'Glutened'? - someone shared it on this forum a few months ago and it reminded me of how isolating it can be, particularly at first, when you don't know anyone with celiac disease. *see link for film below. I realise now how blessed I was that when I was diagnosed two friends were also diagnosed around the same time, as we shared a lot of tips and recipes at the start. Since then the number of people I know diagnosed with coeliac disease has grown and grown, there seems to be a much greater awareness of it among healthcare professionals and the public, at least this side of the Atlantic (I'm British). I think in time you may find this, too. That said, those two coeliac buddies were 'straightforward' cases who seemed to recover very quickly when on a gluten-free diet - I struggled for some time. So I found that I spent much more time discussing things with this online coeliac family. If you have any more questions, we're here for you. I hope your event on 15th goes well. Sounds like a good start! I like you am not keen on Facebook, but perhaps setting up an account short-term might help? * https://vimeo.com/486284734 Cristiana -
You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy. Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely, In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D. Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example, too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana
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By tiffanygosci · Posted
EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area. -
Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient. The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.
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For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful. "GLIADIN (DEAMID) AB, IGA FLU Value 0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody." Anyone know what in the world this means. She isn't scheduled to see GI until late April.
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