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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
Also, there is this product: -
- 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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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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By Scott Adams · Posted
That is true, but they are not a bad place to start. I recommend ones One A Day without iron, unless you need iron. You can definitely add other supplements over time if needed, but it's a good starting point that can address a variety of nutrient deficiencies.
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