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  • Topics

    • Zepplyn
    • jamiet06
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  • Posts

    • elizabethhousworth
      Thanks. My son has been on B2 for two to three years now. I found literature about B1 earlier and put him on a B1 supplement, but not thiamine tetrahydrofurfuryl disulfide specifically. He also gets D and Magnesium. He goes to his doctor in June and I am going to ask for bloodwork to look for any deficiencies. What I suspect is that he is having a gluten-like reaction to the proteins in other grains. It is well known that a small percentage of celiac patients react to the protein in oats. Oats are in gluten-free Oreos, so we removed them. He got a little better. The science with oats is pretty solid. My son's nutritionist knows about it and it is easily found in PubMed. I suspect my son is reacting to something else. The next thing that I only just removed was corn, at least things with corn protein. I need to give that a couple of months. If that doesn't work, I will try to replace his cheese with goat-milk cheese, although that will be hard.    My son was migraine free for over a year on a strict gluten-free diet before this past fall. I can test his foods for gluten and I have given in to diet rigidity. He eats my homemade refried beans and rice for lunch every day, so his rigid diet contains pretty healthy components. Given his antibody levels (tTG-IgA very low) and that I tested everything under the son that he ingests when his migraines returned and nothing tested positive for gluten, I think he really is gluten-free. So my personal working hypothesis is that he is having a reaction to a similar protein, one in another grain. However, the neurologist sees migraines come and go in lots of normal people, so it might just be that he is now having multiple (3-10) migraines monthly and it is hormonal or weather-related or something that is entirely distinct from an antibody reaction. I just would like them to go away again, as would he.    Thanks again! Elizabeth
    • knitty kitty
      Welcome to the forum, @jamiet06, Yes, it does point in that direction.  Your report says "Correlation with clinical findings and results of serological studies is recommended"  is saying you should undergo a gluten challenge and be tested for antibodies associated with Celiac Disease.   These antibodies are produced in celiac disease in response to gluten, but you have to eat generous amounts of gluten for the antibodies to show up in the bloodstream. A gluten challenge means you eat 10 grams or more of gluten  (4 to 6 slices of gluten containing bread or equivalent or more) per day for a minimum of two weeks.  
    • knitty kitty
      @elizabethhousworth, I found that supplementing with Riboflavin Vitamin B2 has helped my migraines immensely.   Effect of Vitamin B2 supplementation on migraine prophylaxis: a systematic review and meta-analysis https://pubmed.ncbi.nlm.nih.gov/33779525/ "Conclusions: A pooled analysis of available randomized controlled clinical trials demonstrated that Vitamin B2 400 mg/day for three months supplementation had significant effect on days, duration, frequency, and pain score of migraine attacks." Dr. Derrick Lonsdale and Dr. Chandler Marrs  have found supplementing with a form if thiamine vitamin B1 called TTFD (tetrahydrofurfuryl disulfide) helps in autism.  Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study https://pubmed.ncbi.nlm.nih.gov/12195231/ The Rationale for Vitamin, Mineral, and Cofactor Treatment in the Precision Medical Care of Autism Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC9964499/ Hope this helps!
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