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!

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.

Rather than create a new thread, I thought I would post to this one as it is on topic. The paper linked below is quite comprehensive regarding the state of knowledge of the safety of hydrolysed barley gluten. The final section gives a good summary. Barley based gluten free beer – A blessing or an uncontrollable risk?  

I started eating gluten free about a month before my test results came through and i was starting to feel a little better but still the off flare ups. I recieved the diagnosis at the beginning of September and they have supplied me with a nutritionist mid october. I am only eating gluten free foods and am so careful but i just seem to still always feel like crap.    i feel fine after breakfast but as soon as ive had lunch i feel crap for the rest of the day. Stomach hurts to apply any pressure, fatigue, mood swings and its getting to me at the moment.   i used to be a head pastry chef and thought id always had that to fall back on but the not being able to eat everything i love and worrying about cross contamination has taken a massive toll. There is only so much you can do with coeliac and i just dont know how to feel better. Any advice or suggestions will be greatly appreciated.