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- Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease31Struggling to get into a good pattern
Thanks @knitty kitty for keeping me thinking about the importance of vitamins. And I appreciate you sending those papers (gives me something for my science brain to work through! I’m a PhD in biology so I like reading these sorts of things). It’s been surprising to see how little is understood about the cause of fibromyalgia. My Vit D went low again on my ... -
- Russ H replied to Jason Dyer's topic in Gluten-Free Foods, Products, Shopping & Medications14Gluten Free Beer - The Enzymatic Hydrolyzation Process Problem
Yes, that seems to be the gist. Quantifying residues in fermented foods and drinks seems to be difficult. There are no tests for total gluten, just immunoassays, which generally detect a single epitope. There are estimated to be approximately 50 sequences that evoke a T-cell response of which nearly half are unknown and have no test. Gluten fragments... -
- MMeade replied to MMeade's topic in Coping with Celiac Disease4Gluten Allergy
Thank you so much @knitty kitty, I really appreciate all the feedback. I have had 2 biopsies of my small intestine that are negative for celiac disease. I have not had the genetic testing though, so that is something I will look into, since the biopsies were done without a prior gluten challenge. I tried one once before an allergy test and was sick for days... -
- MMeade replied to MMeade's topic in Coping with Celiac Disease4
Gluten Allergy
Thank you so much Scott- hearing this actually brought tears to my eyes! It is so hard to explain to people/in-laws who question me all the time- I’ve considered just telling them I have celiac disease to stop the questions. Knowing I’m not alone helps tremendously. Thank you 🙏- 1
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- trents replied to Jason Dyer's topic in Gluten-Free Foods, Products, Shopping & Medications14Gluten Free Beer - The Enzymatic Hydrolyzation Process Problem
So, as I understand this, there is uncertainty as to how much the gluten protein has to be degraded before it is safe and doesn't cause a reaction. There is also uncertainty as to how consistently hydrolysis processes degrade the gluten protein and there may be considerable variability from one processing setting to another. I suspect this also is a problem...
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By Rejoicephd · Posted
Thanks @knitty kitty for keeping me thinking about the importance of vitamins. And I appreciate you sending those papers (gives me something for my science brain to work through! I’m a PhD in biology so I like reading these sorts of things). It’s been surprising to see how little is understood about the cause of fibromyalgia. My Vit D went low again on my last blood test so I know I’m back to being deficient there (it did go up for a while but back down again). Whomp whomp. So I’ll be both reading about and taking vitamins. Thanks again for your input. Really appreciate it. -
Yes, that seems to be the gist. Quantifying residues in fermented foods and drinks seems to be difficult. There are no tests for total gluten, just immunoassays, which generally detect a single epitope. There are estimated to be approximately 50 sequences that evoke a T-cell response of which nearly half are unknown and have no test. Gluten fragments remain that bind to IgA and IgG in vitro but this does not necessarily make them immunotoxic. Also, the fragments are "drastically reduced" by gastrodudenal digestion. PEP enzyme cannot cleave all proline sites and there is a large variation in the amount of residual gluten in gluten reduced beers. I.e. the safety of gluten reduced beer is uncertain.
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Thank you so much @knitty kitty, I really appreciate all the feedback. I have had 2 biopsies of my small intestine that are negative for celiac disease. I have not had the genetic testing though, so that is something I will look into, since the biopsies were done without a prior gluten challenge. I tried one once before an allergy test and was sick for days. I do know that I don’t easily methylate my b vitamins but have to be careful taking methylated versions as they give me too much energy and I can’t sit still or sleep. I also prefer magnesium glycinate but I only take it in the mornings because I have to take it with food to avoid stomach upset. I’ve often wondered if I have leaky gut syndrome and my symptoms indicate yes. I appreciate hearing what works well for you. I think I’ll focus on benfotiamine and see if I can tolerate it and/or it makes a difference. I really need to find a good nutritionist or naturopath. I’ll keep looking. In the meantime, thank you for your support!
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Thank you so much Scott- hearing this actually brought tears to my eyes! It is so hard to explain to people/in-laws who question me all the time- I’ve considered just telling them I have celiac disease to stop the questions. Knowing I’m not alone helps tremendously. Thank you 🙏
-
So, as I understand this, there is uncertainty as to how much the gluten protein has to be degraded before it is safe and doesn't cause a reaction. There is also uncertainty as to how consistently hydrolysis processes degrade the gluten protein and there may be considerable variability from one processing setting to another. I suspect this also is a problem with other "gluten free" products made from wheat starch such as certain pizza brands.
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