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Coping with Celiac Disease
Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.
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Recent Activity
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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease17Refractory Celiac disease - what to do
@RMJ what is the DPG test? I think my doctor never had me do that -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease17
Refractory Celiac disease - what to do
Thank you @Scott Adams and @trents this is very helpful, and I think I have some solid ideas to bring to my doctor (corticosteroids, testing for chron’s, increasingly strict gluten-free diet) @RMJ thank you this is definitely reassuring as well, I’m feeling frustrated and hopeless because I have gone through a similar progression of increasing strictness, an... -
- knitty kitty replied to SMK7's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms22High IGA antigliadin, everything else normal, what does this mean?
Welcome to the Tribe! Take the Celiac diagnosis and run with it! P.S. Yes, adopting a gluten free diet is a big mental adjustment. Many go through the five stages of grief. Many are relieved to have a definitive diagnosis instead of being a walking medical mystery. The forum here can help with lots of articles and years of experience to get you... -
- SMK7 replied to SMK7's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms22High IGA antigliadin, everything else normal, what does this mean?
This was the advice from the GI physician: "We discussed that your work-up is equivocal for celiac disease due to discordant serologies and biopsy results. As we discussed the gliadin DGP Ab IgA has a lower sensitivity (87%) and specificity (80-95%) for celiac disease compared to tissue transglutaminase Ag IgA (sensitivity of 95%, specificity of >...- 1
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- SMK7 replied to SMK7's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms22
High IGA antigliadin, everything else normal, what does this mean?
Thanks, yes I have one of the celiac disease genes.- 1
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@RMJ what is the DPG test? I think my doctor never had me do that
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Thank you @Scott Adams and @trents this is very helpful, and I think I have some solid ideas to bring to my doctor (corticosteroids, testing for chron’s, increasingly strict gluten-free diet) @RMJ thank you this is definitely reassuring as well, I’m feeling frustrated and hopeless because I have gone through a similar progression of increasing strictness, and am now at a level similar to what you describe, but have not seen any changes in my blood results. I am now thinking to cut out processed foods altogether maybe with the help of a dietician? I’m also worried about cross contamination from the tables or microwave at my work (there is often free pizza and such sitting). It just feels so restrictive to not see or feel any results
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By knitty kitty · Posted
Welcome to the Tribe! Take the Celiac diagnosis and run with it! P.S. Yes, adopting a gluten free diet is a big mental adjustment. Many go through the five stages of grief. Many are relieved to have a definitive diagnosis instead of being a walking medical mystery. The forum here can help with lots of articles and years of experience to get you started on your Celiac journey. Best wishes! -
This was the advice from the GI physician: "We discussed that your work-up is equivocal for celiac disease due to discordant serologies and biopsy results. As we discussed the gliadin DGP Ab IgA has a lower sensitivity (87%) and specificity (80-95%) for celiac disease compared to tissue transglutaminase Ag IgA (sensitivity of 95%, specificity of >95%, which you tested negative for). Your duodenal biopsies were normal; though in mild cases of celiac disease, affected areas can be patchy. While about 90% of individuals with celiac disease carry the HLA-DQ2 allele, many people in the general population also carry this allele without developing celiac disease. In the context of some of your symptoms of GI upset, it's possible that you may have either irritable bowel syndrome, gluten intolerance, or a very mild case of celiac disease. As we discussed, sometimes we can attempt a high gluten diet for 6-12 weeks with a repeat EGD and biopsies. Or, you can treat this as if you had celiac disease by being gluten free and see if it helps with some of your other GI symptoms. We decided to take the second approach. In patients with celiac disease, we do monitor vitamin levels every year. We would also get a DXA scan to screen for osteoporosis. I have ordered these studies for this year; subsequent checks can be done via your primary care doctor's office."
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Thanks, yes I have one of the celiac disease genes.
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