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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.


7,184 topics in this forum

  1. jen2be2
    Juliet
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  2. jen2be2
    Canadian Karen
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  3. sarahelizabeth
    jen2be2
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  5. janelyb
    Lisa
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  6. ptkds
    squili
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  7. momof2sn
    Kassie

    Muffins

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  8. Guest maddiesmom
    Lisa

    Loaf Of Bread

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  9. sarahelizabeth
    JennyC
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  10. Amanda Thomas
    Pacer
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  12. janelyb
    Nantzie
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  13. Guest GrimTribe
    jen2be2

    Bood Test Results

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  14. momof2sn
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  15. Pacer
    Jodele
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  16. pedro
    Q1821
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  17. ptkds
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  18. Guest lorlyn
    Juliet

    Getting Overheated

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  19. wolfie
    JennyC
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  20. sclark9602
    Juliet
    • 4 replies
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  21. Pacer
    edgeyveggie
    • 17 replies
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  22. cdfiance
    CarlaB
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  23. familyfirst
    mcsteffi
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  24. sillyactsue
    Nikki2003
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  25. momof2sn
    dally099
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  26. janelyb
    FeedIndy
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  27. Guest maddiesmom
    Juliet

    Hot Dog/hamburger Buns

    • 2 replies
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  • Recent Activity

    1. - elisejunker44 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Schar's products contain wheat!

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

    3. - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      20

      Diagnosed Marsh stage 3C in January 2026

    4. - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
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      Diagnosed Marsh stage 3C in January 2026

    5. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      322

      Terrible Neurological Symptoms

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  • Posts

    • elisejunker44
      I have enjoyed Schar's gluten free products for years. However, some items Do contain Wheat and are not clearly labeled on the front. Indeed the package states 'gluten free' on the front, and it is not until you read the ingredient label that one see's wheat as the first ingredient. Some celiacs may be willing to take a chance on this 'gluten free wheat', but not me. I strongly feel that the labeling for these wheat containing products should be clearly labeled on the front, with prehaps a different color and not using the 'no gluten symbol on the front. The products are not inexpensive, and also dangerous for my health!
    • knitty kitty
      Thiamine Mononitrate is "shelf stable" and won't break down easily when exposed to heat, light and over time.  This makes it very hard for the body to absorb and utilize it.  Only thirty percent is absorbed, less is utilized because it takes additional thiamine to break it down.   Thiamine Hydrochloride is great.  Benfotiamine is wonderful, too.   Retaining water, edema, is a symptom of low thiamine.  I'd bloat up like a puffer fish.   The ingrown toenail problems I had that I attribute to Niacin deficiency and Vitamin C deficiency.  My toenails curled in and grew thick and yellow, thickened heels.  It was awful.   So glad you're going to give thiamine hydrochloride a try!   Let me know how it goes.  You may feel worse before you feel better, the thiamine paradox, but it does clear up.  It's like a car back firing if it hasn't been run for a while.   Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • Known1
      Thanks again, I'll keep pressing on.  🤞
    • knitty kitty
      @Known1, Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".   It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve. Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.   You could skip the multivitamin instead.  
    • HectorConvector
      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride. Back on the note of diabetes (potentially) I haven't had the blood test for a while and I did notice ingrown toenail type infections a few times in the last 3 years that kept coming back. I heard that diabetes caused high urination. But eating sugar and elevated blood sugar causes the opposite in me. If I eat a lot of sugar I retain water, like big time. If I ate a bunch o sugar in the afternoon say, I can produce little enough urine that I can go over 12 hours and have nowhere near enough urine to need to void in that time or longer which seems abnormal.       
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