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- Aretaeus Cappadocia replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs2Help understand results
tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into ... -
- xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease41My journey is it gluten or fiber?
So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast. -
- 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.
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By Aretaeus Cappadocia · Posted
tldr: "we tested your daughter with one test and that result does not suggest Celiac. However, the test we used should not be used as the initial screening test for celiac (like it appears they did) because it misses a lot of cases ("low specificity"). No further testing is scheduled or pending" We eat "gluten" and our bodies digest part of it into "deamidated gliadin" (GLIADIN (DEAMID)). The gliadin is what actually triggers the Celiac disease pathway. The celiac's immune system sees gliadin much like an invading virus, and makes antibodies (AB) against gliadin. Each antibody has the ability to recognize a specific target (anti-gliadin antibodies recognize gliadin). When antibodies find their specific target, they stick to it and call in other parts of the immune system to help eliminate the target. This process also causes the immune system to make a lot more of that antibody, and your test was designed to measure if there was an elevated level of type A (IgA) anti-gliadin antibodies. Antibodies, which are also called immunoglobulins (Ig), come in different types (e.g. class "A" or "G"). Think of antibodies as different kinds of cars, and antibody types as different colors of car. An "A" type (color) is called IgA, and a G type is called IgG. IgA's are more relevant to Celiac disease than are the IgG's or other types. Unfortunately, some people don't make very much of the IgA class (like not making aqua-colored cars, even though they make the same cars in green) and that's a common reason for the gliadin-Ab-IgA test to fail to identify celiac. As Trents wrote, they should have given her a "total IgA" test and probably tested her for the anti-tTG IgA antibody. -
By xxnonamexx · Posted
So I have the Benfo, Thiamax, and Neuromag along with my Super B Complex. When I read the labels it says take 3/take 4 times a day but one pill a day is ok correct since its 4 pills at breakfast. -
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
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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.
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