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Parents, Friends and Loved Ones of Celiacs

Discussions among parents of kids or babies with CD. Non-celiacs can discuss their experiences dealing with a friend or loved one with the disease.


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    Mom of a Celiac toddler
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  • Posts

    • Scott Adams
      I think potato chips can be fine depending on the oil used and the amount of salt on them, so if they help you gain weight you may want to keep them in your routine.
    • Scott Adams
      I also had issues with severe neck and shoulder pain for years, so this may be a symptom of celiac disease.  In case you end up screening negative for celiac disease, approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • Sarah Grace
      Many thanks to everyone for the advice received and especially to Knitty Kitty.  I have ordered a one month supply of Benfotiamine and very much look forward to trying it.  The expression "I felt like I was dying" really resonates with me.  I have other symptoms which I didn't mention, such as vertigo and brain fog which are referenced by knitty kitty in her very detailed post. Clearly, there is other stuff that I should be trying, but I can only cope with one thing at a time at present! I will be back to let you know if the Benfotiamine, which should arrive in the next few days, has had any impact.🙂
    • glucel
      OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
    • glucel
      Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi may be healing and methyl helping although also eating potato chips every few days so that is probably helping too.  Taking 100 mg of b1 along with complex. I took all thiamine maybe 100 or so tablets. Brain fog diminished some and it seems swallowing trouble also diminished. Stopped taking it couple months or so ago and did not notice any reversals. I think I will finally look into bentofothiamine. Also eat 1/2 ounce liver every morning for additional v b support.
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