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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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- Scott Adams commented on Scott Adams's article in Latest Research3Understanding the Role of Transglutaminase 2 in Celiac Disease
@Jmartes71 It would probably be best to start a new topic in our forum under the "Coping" section, rather than to post this as an unrelated comment to this article.- autoimmune disorders
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- Colleen H replied to Colleen H's topic in Coping with Celiac Disease4Gluten related ??
I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle?? Thank you -
- Colleen H posted a topic in Coping with Celiac Disease0
Heat intolerant... Yikes
Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔 Winter is here. I had to lower my thermostat because I couldn't take that hot air feeling 😔 Hopefully it goes away soon -
- trents replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms14Taking Probiotics but Still Getting Sick After Gluten – Advice?
I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where...- 1
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- Jmartes71 commented on Scott Adams's article in Latest Research3Understanding the Role of Transglutaminase 2 in Celiac Disease
I was listening until I saw Standford, I was diagnosed in 1994 before any foods eliminated from my diet and diagnosed celiac by Kaiser. I was medically gaslight and continuing and so I went to Standford this year so I can get the medical help and the documentation for disability since my body is literally falling apart but per pcp Im fine because blood looks...- 1
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I did ... But aren't we going to be vitamin deficienct if we are not eating due to being sick ?? If the food we eat is gluten free and we have other sensitivities , how do we get out of the cycle?? Thank you
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Anyone else get pins and needles. ??? Burning feeling ? Heat makes it so much worse 😔 Winter is here. I had to lower my thermostat because I couldn't take that hot air feeling 😔 Hopefully it goes away soon
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I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease".
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If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
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Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
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