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NanceK

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Everything posted by NanceK

  1. NanceK
    So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron. I wondered how it was possible that I had celiac disease...
  2. NanceK
    Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
  3. NanceK
    Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
  4. NanceK
    Thanks Beverage! I've never heard that in regards to the glycinate. Good to know! I'll take it earlier for now and then switch over to another form once my supply is gone. Appreciate the info!
  5. NanceK
    Thank you, Scott. Appreciate the breakdown on the vitamins!
  6. NanceK
    Hi all, When I was diagnosed several years ago as a silent celiac (osteoporosis and neuropathy were my issues) most of the additional labs besides the celiac panel were in the middle range of normal, which included B1, B6, B12, and ferritin (although iron stores were low normal). Vitamin D was low. I had already been supplementing with B12 once I hit...
  7. NanceK
    Hi HayleighNoWhey - My son had the same issues. Food would cause him to choke and sometimes liquids as well. The GI doctor thought it might be something called eosinophilic esophagitis. The diagnosis, however, can only be confirmed with a biopsy of the lining of the esophagus during an upper endoscopy. It is NOT seen with the naked eye during an endoscopy...
  8. NanceK
    I take Pure Encapsulations 120 mg and have no problem with them.
  9. NanceK
    Hi CookiesGem, Yes, my small fiber neuropathy and osteoporosis were caused by silent celiac disease. Blood tests run by my endocrinologist confirmed celiac disease, and further labs by neurologist also confirmed celiac disease. He did a skin/nerve punch biopsy (ankle and hip areas), which confirmed the small fiber neuropathy. Genetic testing, as far...
  10. NanceK
    Bechari - I think all of your four points are valid. I had an EMG initially and was told I had very mild peripheral neuropathy. Celiac disease was not mentioned. But the symptoms persisted and seemed to worsen, so I saw another neurologist who did another EMG, which showed the same. He suggested the skin biopsy to check for small fiber neuropathy and that...
  11. NanceK
    Hi Bechari - Have you seen a neurologist? I had these symptoms (ataxia, pins/needles, fatigue, flushing) among others, which led me to a neurologist. I was dx’d with small fiber neuropathy, which can be a cause of celiac disease. It took a while for those symptoms to get better after being gluten-free. Being dx’d with osteoporosis and small fiber neu...
  12. NanceK
    I went ahead and called the company directly and spoke to a rep there. He asked for the Lot # on the box because he said it depends on where the lot is processed as there are many processing facilities. He said they cannot guarantee the product is gluten-free since they don’t check it for gluten in the final processing step. I’ll be mentioning it to my GI ...
  13. NanceK
    Hi Scott…The prep included four Dulcolax tabs and 8 oz of Miralax in 64-ounces of Gatorade. I knew Miralax was gluten-free, but checked Dulcolax and the article I read said it was not gluten-free. I did notify my GI doctor’s nurse and was told they’ll look into it. As stated, however, I had already taken them. Anyway, this is the article I read… htt...
  14. NanceK
    Dulcolax was included in my colonoscopy prep instructions. I had already taken the tablets and wondered if it was gluten-free as an afterthought and realized it wasn't. GI symptoms did not lead to my diagnosis - osteoporosis, neuropathy and sinus issues led to mine. After taking the tablets, I instantly had a headache, nose was stuffy, tingling in my feet...
  15. NanceK
  16. NanceK
    Thank you for your reply Trents. Yes it’s unfortunate that sometimes we don’t get the info we need from health professionals. My GI doctor told me the above, not my primary! You just end up trying to figure it out on your own and with the help of sites like this one. I do know that each disease affects different areas (small intestine va large). However, I ...
  17. NanceK
    Hi…I’m a “silent” celiac disease patient diagnosed two years ago after terrible DEXA results and neuropathy. No GI symptoms. Now, after being gluten-free, I’ve been diagnosed with diverticulitis and will be having a colonoscopy after the colon heals better. I’ve had no help with diet for this and was discharged from the hospital with no info on diet. A nur...
  18. NanceK
    I was diagnosed at age 62 after a DEXA with severe osteoporosis, and small fiber neuropathy. No GI symptoms. I had no idea they could be the cause of celiac disease. My biopsy revealed my small intestine was graded as moderate celiac. My son tested negative (labs and endoscopy at age 28) as did my brother. He doesn’t think his adult kids need to be tested (...
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