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Hello Knitty Kitty, Many thanks for asking about my progress.  Its mixed....  I've been taking Benfotiamine since November.  I started on 300mg, but I didn't notice any change.  Increased to 900mb in 300mg tablets throughout the day and initially it seemed to be a cure.  But then the Hypoglycaemia and migraines started to return...it's really very difficult for me to control my diet.  I'm still taking the Benfotiamine but I now take the Benfotiamine in the evening and usually about 600mg after my early evening meal.  I'm still very sensitive to carbs and especially alcohol and sugar, which makes any social activity really difficult especially in the evenings and having to avoid all gluten as well....anyway I guess most members of this forum are very familiar with this.   However, I do think the Benfotiamine is very helpful.  I still get significant vertigo (very wobbly at random moments) but I think my brain fog and insomnia have improved.  I'm quite active physically (gardening and dog walking etc), so need carbs for this.  I am a bit of a coffee addict and wonder what impact that might have? Any suggestions that you have that might further improve my diet and management of the hypoglycaemia would be much appreciated, as I definitely have failed to conquer the problem.

Thanks kitty, I needed reminding about thiamine. I ran out of magnesium so stopped taking it and that was ages ago, it definitely helps with my energy levels and general function. I just took some now and I’ll get some more magnesium. Although I don’t really understand the gundry list it does seem to correlate with foods I can/cannot eat, lectins are not all made equal and it seems to be personal which we react to but some are generally more problematic than others, I think he’s based the list on avoiding lectins that people are often reacting to on an igg test. I think it’s fructose I’m reacting to in fruit rather than histamine because I’m fine with coffee, not sure of the quantity of tannins but for me green tea is worse than black and coffee is fine. Interesting about wet beriberi as I nearly died from pneumonia when young so I wonder if it was related. I react differently to the different foods, lectins cause bloating bleeding and severe pain, sugar I feel wiped out but don’t get the bleeding, tea it’s just nausea. I’ve wondered about lectins being sugar binding proteins and my intolerance of sugars but the bleeding does seem to be a specific response to lectin consumption which I think is an autoimmune response because it improves when I take immune modulating mushrooms (reishi and cordyceps). I really do appreciate you being here to help whenever  I log in, than you 🙏

hey knitty, thanks for the follow up. I did buy the benfotiamine before I saw a couple of the side effects that concerned me esp bracardia. I already have irregular heart beat and have had elevated liver enzymes before. I lowered the count by taking milk thistle in case anyone interested. I realize that many side effects are simply for legal protection but at my age and as a recovering heart patient can not take risk. Anyway, been strictly gluten-free since we last talked. I did add 200 mg of vit b1 in addition to the b complex. Not as much b1 as you suggested because of my conservative nature but at least an attempt. I still have substantial bloating which unfortunately is probably not caused by gluten, as I was hoping that gluten-free would clear it up a bit.  I wish that I could report a major benefit from going gluten-free but I can't. But I never got desperately ill as many have reported here and my poor brother who was completely overcome til diagnosed.  Take care  

Since lectins occur in almost everything, it's pretty unrealistic to avoid them all.  I didn't understand the rationale behind Dr. Gundry's lists either. Many fruits either contain high histamine amounts or are histamine releasers.  Histamine is made by our body, but we can also consume it in foods, because plants and animals make histamine, too.  Histamine is a neurotransmitter, that results in alertness.  That cup of coffee in the morning?  Releases histamine, so we wake up more.  But histamine is released as part of the immune response in Celiac and other illnesses, causing inflammation.   Our body can clear histamine, but if the body can't keep up with the histamine we are making ourselves as well as the histamine we're eating, we can have serious problems, digestive problems, insomnia, depression.  Some fruits can have high levels of fructose, one kind of sugar in fruits.  Some intestinal bacteria can ferment fructose, resulting in gas, bloating, diarrhea.  So, yes, Fructose Malabsorption can occur in Celiac.   Your dont list...Honey, maple syrup, lectins (and their attached carbohydrates), sugar... ....bedridden...These are all carbohydrates, sugars.  We need Thiamine to turn carbohydrates into energy.  Without sufficient thiamine, we can develop Gastrointestinal BeriBeri which has the classic digestive symptoms, nausea, diarrhea, abdominal pain. Tannins in tea and coffee cleave thiamine in two, making it nonfunctional.   Your do list...hazelnuts, pistachios, pressure cooked potatoes, and yogurt, butter, cheese.... These are foods that contain thiamine.  Pressure cooked mashed potatoes have more thiamine than boiled potatoes.  Those nuts are high in thiamine.  Dairy products are a good source of thiamine.   I can't diagnose, I'm not a doctor.  You read these articles and let me know if anything rings a bell with you.  Yes, I see thiamine deficiency everywhere because it is unrecognized by doctors.  I recognize it because I had it. Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ Refeeding Syndrome https://www.ncbi.nlm.nih.gov/books/NBK564513/ Refeeding Syndrome (a different article...) https://pubmed.ncbi.nlm.nih.gov/33232094/

The AIP diet restricts carbohydrates for the first few weeks.  Excluding carbohydrates changes your microbiome.  The bacteria that live in the intestines that feed on carbs get starved out when you don't eat carbs.  Small Intestinal Bacterial Overgrowth (SIBO) occurs frequently in Celiac Disease.  SIBO can cause gas, bloating, and diarrhea, symptoms similar to Celiac symptoms.   When the digestive system is feeling better, then additional foods are added back slowly to look for reactions.  I did not consume carbs for a several months because I felt better without them.  Currently, a "Modified AIP diet" has allowed rice, but doing this won't starve out the SIBO that occurs in celiac disease. I took vitamins and minerals throughout the day and felt great improvement because those essential nutrients were finally being absorbed. Thanks for letting me share what made my celiac journey better.