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- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease25Refractory Celiac disease - what to do
@Scott AdamsThe only restaurants or prepared food that I have eaten outside of my home for the last 6 months are from dedicated gluten free restaurants or facilities, except for once in February at a place that had a gluten free night where they deep clean the kitchen and are dedicated gluten-free for the day, and twice in April (due to out of state job interviews... -
- Scott Adams replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease25Refractory Celiac disease - what to do
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- Scott Adams replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease25
Refractory Celiac disease - what to do
Do you eat in restaurants, or food prepared in restaurants? -
- ehb replied to ehb's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease25
Refractory Celiac disease - what to do
Thank you, I think with the initial blood tests they did actually do the IgA tests first to make sure those are normal! I am wondering if there are any tests that actually test for the presence of the gluten protein? From my understanding, all of these test for gluten antibodies, which in the case of refractory celiac would switch to a gluten-independent... -
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@Scott AdamsThe only restaurants or prepared food that I have eaten outside of my home for the last 6 months are from dedicated gluten free restaurants or facilities, except for once in February at a place that had a gluten free night where they deep clean the kitchen and are dedicated gluten-free for the day, and twice in April (due to out of state job interviews) at places that were not dedicated, but mostly gluten free where I questioned them to make sure they were following proper cross contamination protocols. I suspect I got glutened back in December from drinking water (but not eating anything) at an italian pizza/pasta place, so since then I'm not even entering gluten-heavy places. For the month prior to my most recent blood test I had only eaten outside my home two or three times at a dedicated gluten free bakery that is owned by a celiac family. I also occasionally (< a couple times a month) will have a labeled gluten-free canned seltzer from a bar, and will ask to open it myself so they don't touch the top of it. Are dedicated gluten-free facilities also a concern with this level of sensitivity - for example if they are using products without gluten ingredients but are not certified? One question I have is if the immune reaction and antibody levels are proportional to the amount of gluten or if it's more of an on/off switch. I am just concerned because I haven't seen any changes at all - I would be willing to be more restrictive if I were confident that it would actually have an effect, but I am feeling quite discouraged living such a restrictive life (even more restrictive than what it seems like is the standard recommendation) without any results at all. Going so far beyond the standard recommendations makes me feel a little crazy like I can't trust anything, but I'm willing to do it if I know it will improve my health. This was helpful for me to take stock of how much I have been eating out of my house, and maybe that should be the first thing I remove completely - thank you!
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By Scott Adams · Posted
Do you eat in restaurants, or food prepared in restaurants? -
Thank you, I think with the initial blood tests they did actually do the IgA tests first to make sure those are normal! I am wondering if there are any tests that actually test for the presence of the gluten protein? From my understanding, all of these test for gluten antibodies, which in the case of refractory celiac would switch to a gluten-independent mechanism of activation. Because my ttg levels havent changed at all with my increasingly strict diet, I am concerned about distinguishing between the possibilities that 1) I am super sensitive to very very small amounts of gluten and am getting cross contamination from somewhere I haven't identified or 2) have refractory celiac where even if I were to eliminate gluten 100%, my immune system is stuck in this activated state or is reacting to something else. The course of action should be different in these scenarios - in scenario 1, I should really lock in and stop eating processed foods all together (even if labeled gluten-free?) and identify any possible source of contamination no matter how small, but scenario 2 would require some other intervention like corticosteroids or a clinical trial. If I could somehow test the actual presence or amount of gluten in my body, I would think that could distinguish between these possibilities - if gluten is present it is more likely scenario 1, and if gluten is not present it's more likely scenario 2. I would probably need a test I could take regularly like once a day
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