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Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you haven't yet been diagnosed this is the place you can discuss your symptoms and any test results that may indicate that you might have the disease.
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Recent Activity
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- Scott Adams replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10Refractory Celiac disease - what to do
Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The... -
- Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease28
Supplements for those Diagnosed with Celiac Disease
I am just sharing my personal supplementation which has been developed over many years now. It's not a perfect fit for everyone, but some lingering issues I had, especially with gluten ataxia, did not go away until I went on this regimen. Good luck with finding experts to help you with this, it is possible, but my doctors were more or less totally useless... -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10Refractory Celiac disease - what to do
I hear you, but I am not sure where to go from here if there is a possibility that it is cause by something other than celiac and gluten. What other things should I be getting tested for and how? If I can't trust the doctors, who can I trust? How can I be sure that it is not from small amounts of gluten that are impossible to eliminate? Would you recommend... -
- trents replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10Refractory Celiac disease - what to do
Doctors aren't always right. I have been participating on this forum for many years and you wouldn't believe the cockamamie things doctors say about celiac disease to our member base. It's often based on very outdated information and sometimes just plain ignorance. Many doctors neglect to tell their patients not to begin a gltuen free diet before the testing...- 1
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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease10
Refractory Celiac disease - what to do
I have changed my toothpaste, and all hair/face/body care products to be gluten free. When I pick up prescription medications I ask for the full ingredients list to check for possible gluten sources, and don't take advil anymore because they cannot verify it to be gluten free. I am not sure how to change my diet further, but please let me know if you have...
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By Scott Adams · Posted
Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: -
By Scott Adams · Posted
I am just sharing my personal supplementation which has been developed over many years now. It's not a perfect fit for everyone, but some lingering issues I had, especially with gluten ataxia, did not go away until I went on this regimen. Good luck with finding experts to help you with this, it is possible, but my doctors were more or less totally useless when it came to having discussions with them about nutrient deficiencies that may have contributed to my gluten ataxia--my doctor literally just "measured" it by poking my feet in various places and saying: "Yep, look like ataxia issues....see you next year." They never even mentioned that it could be related to nutrient deficiencies. In any case, don't forget to be your own health advocate, because most of this stuff isn't rocket science, and the studies are out there which show that most celiacs have various nutrient deficiencies. -
I hear you, but I am not sure where to go from here if there is a possibility that it is cause by something other than celiac and gluten. What other things should I be getting tested for and how? If I can't trust the doctors, who can I trust? How can I be sure that it is not from small amounts of gluten that are impossible to eliminate? Would you recommend the Amlitelimab trial? Should I continue eliminating things from my diet? there is so much conflicting information and research, I would prefer to defer to the doctors, but it seems that they don't have many more recommendations for me either...
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Doctors aren't always right. I have been participating on this forum for many years and you wouldn't believe the cockamamie things doctors say about celiac disease to our member base. It's often based on very outdated information and sometimes just plain ignorance. Many doctors neglect to tell their patients not to begin a gltuen free diet before the testing is finished. Others tell them just to cut back on gluten but a little is okay. Think about it. The tTG-IGA test has a 90-98% specificity rating. That means there is somewhere between a 2% and a 10% chance that elevated tTG-IGA levels can be caused by something other than a celiac reaction to gluten. The tTG-IGA antibodies are just an inflammatory response of the immune system, most likely to gluten but a certain percentage of the time to something else. And the villous atrophy is just the result of persistent inflammation, whatever the cause. Why don't you print out the article on blood antibody tests and show it to the doctor and ask him/her what it means that the test is less than 100% specific?
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I have changed my toothpaste, and all hair/face/body care products to be gluten free. When I pick up prescription medications I ask for the full ingredients list to check for possible gluten sources, and don't take advil anymore because they cannot verify it to be gluten free. I am not sure how to change my diet further, but please let me know if you have any other ideas for potential hidden sources.
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