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- trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4False blood test positive?
Since your mother has celiac disease, I would still keep an eye on this as there is a genetic component. Study results vary wildly, but the numbers are that anywhere from 10% to almost 50% of the first degree relatives of those with active celiac disease will themselves develop celiac disease. -
- Russ H replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4False blood test positive?
Your initial test showed a moderately raised level of IgA tTG2. There are several causes of this apart from coeliac disease including: inflammation of the joints, bowel and liver. Transient rise in levels can be caused by an infection. -
- trents replied to sillyyak52's topic in Coping with Celiac Disease6
Family education
Rogol72, your recommendation to the OP to "show them pictures of dermatitis herpetiformis" confuses me as the OP does not mention having dermatitis herpetiformis. -
- Rogol72 replied to sillyyak52's topic in Coping with Celiac Disease6Family education
Hi @sillyyak52, I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case... -
- AndiOgris replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms4False blood test positive?
Hi Trents, Thanks for your response! And yes, the TTG-IGA was the only test done. We did some more general blood tests at the time of the initial celiac test in 2023, but none showed any deficiencies usually associated with celiac disease. I'll mention the new gluten challenge guidelines to my doctor, perhaps he will ask me to do the test again...
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Since your mother has celiac disease, I would still keep an eye on this as there is a genetic component. Study results vary wildly, but the numbers are that anywhere from 10% to almost 50% of the first degree relatives of those with active celiac disease will themselves develop celiac disease. -
Your initial test showed a moderately raised level of IgA tTG2. There are several causes of this apart from coeliac disease including: inflammation of the joints, bowel and liver. Transient rise in levels can be caused by an infection.
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Rogol72, your recommendation to the OP to "show them pictures of dermatitis herpetiformis" confuses me as the OP does not mention having dermatitis herpetiformis.
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Hi @sillyyak52, I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case the skin ... The Coeliac rash that won't go away without a strict gluten free diet and Dapsone treatment (a toxic antibiotic). I'd also look at @glutenhatesmyguts on youtube ... a funny educational take on Coeliac Disease ... the clips titled as follows may help ... "Celiac Disease Explained | Why Gluten REALLY Hates My Guts!" and "Story time: I almost ..." This person is on Tiktok also and has a category "Coeliac & gluten-free Info ". There's plenty of Coeliacs on Tiktok and IG posting frequently and advocating for themselves about the need to be strict and what happens when they get glutened. Celiac Canada also has good resources on YT, both long and short educational clips ... @CCACeliac . Do you know any Coeliacs in your area who could help you explain the need to be so strict? Some Coeliacs have mild symptoms while others have awful reactions to just a few crumbs. Or maybe the nurse could put you in contact with some other Coeliacs or a support group to help you with your family. Hope this helps you. And keep advocating for yourself no matter what.
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Hi Trents, Thanks for your response! And yes, the TTG-IGA was the only test done. We did some more general blood tests at the time of the initial celiac test in 2023, but none showed any deficiencies usually associated with celiac disease. I'll mention the new gluten challenge guidelines to my doctor, perhaps he will ask me to do the test again? And I'll see what he says more generally... Thanks again!
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