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Coping with Celiac Disease
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Recent Activity
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- trents commented on Scott Adams's article in Diagnosis, Testing & Treatment8Emerging Celiac Disease Treatments: Will Any Allow Gluten Consumption Again? (+Video)
Marish makes a good point. Even if there is an effective "pill" therapy developed, how expensive will it be and will insurances cover it?- 1
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- Marish commented on Scott Adams's article in Diagnosis, Testing & Treatment8Emerging Celiac Disease Treatments: Will Any Allow Gluten Consumption Again? (+Video)
I have mixed feelings about this. A total “cure” would be optimal, but anything less might dilute the current market influence for gluten-free foods that Celiac and gluten-intolerance sufferers have now, with products and restaurants offering gluten free foods, and food testing required for certified gluten free labeling. I also fear that as with any med...- 1
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- Lotte18 commented on Scott Adams's article in Diagnosis, Testing & Treatment8Emerging Celiac Disease Treatments: Will Any Allow Gluten Consumption Again? (+Video)
We know that many of those studies are outdated. The prevalence of new testing capabilities is continually changing the landscape. And as you say it's an approximation, not gospel. The real number is unknown and may never be known. Are we all so complacent that we are just going to keep echoing the 1% figure? Why aren't we elevating Lionetti's study...- alternative
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- somethinglikeolivia replied to somethinglikeolivia's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Am I celiac or not?
Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again!- 1
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- trents replied to somethinglikeolivia's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7
Am I celiac or not?
I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over...- 1
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By somethinglikeolivia · Posted
Responding to both of your replies: thank you so much!! That makes a lot of sense and helps me feel better about it - I really appreciate the clarification and recommendations. You guys have been very helpful and this site is a gift. Thanks again! -
I think giving attention to the main sources of exposure such as direct consumption of gluten and gross cross contamination with reasonable attention to handwashing and thorough counter top cleaning and dishwashing should cover cross contamination issues. The biggest precautions would be eating in restaurants and at other's homes. Don't get paranoia over it and don't make trouble where there is none. As far a what you communicate with your physicians, just tell them what you know. Strongly positive antibody tests, negative biopsy, positive symptoms when consuming gluten with clearing of symptoms when gluten free.
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Occasionally we do see anomalies where celiac antibody tests are positive but biopsies are negative, and even visa versa. Sometimes, damage to the small bowel lining is patchy and unless numerous samples are taken from various areas, the damage can be missed. So, there's that issue as well. I think in your situation, the tell-tale indicator is the difference in symptoms between when you were off gluten and when you were consuming it.
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By somethinglikeolivia · Posted
Okay, that makes sense - so based off of the 90% odds that it is positive, it’s worth switching to fully gluten-free? How strict do I need to be with cross-contamination, handling, etc. Is it something that can go by feel, for instance if I feel okay making my family sandwiches and handling the bread as opposed to eating it, or is it something that is causing silent damage even if I feel fine? Also, do I make it clear to my rheumatologist and other medical providers that I am celiac? Or will they veto that due to negative endoscopy? Thanks again for the help! -
By Scott Adams · Posted
If you look at the article that I shared you will notice that "The test is estimated to have a sensitivity of approximately 90%, which means that it correctly identifies 90% of people with celiac disease. It also has a high specificity of around 95%, which means that it correctly identifies 95% of people who do not have celiac disease," so your results indicate that you very likely have celiac disease, especially if you also have symptoms while eating gluten that go away when you stop eating it (although many celiacs don't have obvious symptoms).
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