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Coping with Celiac Disease

Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.


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  • Recent Activity

    1. - Wheatwacked replied to Chris Tonelli's topic in Related Issues & Disorders
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    2. - Wheatwacked replied to Zoe26's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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    3. - knitty kitty replied to AmandaA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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    4. - Barrie9 replied to Sarah8793's topic in Coping with Celiac Disease
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    • Wheatwacked
      She should be tested for 25(OH)D vitamin D blood level.  Most newly diagnosed with Celiac Disease are disturbingly low.  Malabsorption syndrome causes poor dietary absorption of vitamin D orally and super high sunscreens block skin production.  Hypervitminosis D which nearly every article written warns of, is a very rare disease. Many these days drink bottled water so do not get the benefit of floridation.  I had lots of cavities as a kid and when they floridated the water I stopped getting cavities.  Of course in those days all we had for sunscreen was baby oil and that "don't be a paleface" stuff, so we actually got vitamin D from the sun.  Celiac Disease uses a lot of vitamin D to control the immune system response to gluten, but we don't get enough. Iodine can help prevent tooth decay and gum disease, and may be more effective when used in combination with fluoride.  Get her medium urinary iodine concentration (Muic) tested for iodine intake deficiency.  In the last 30 years iodine levels have fallen by 50% in the United States.
    • Wheatwacked
      When my son was diagnosed with Celiac Disease in 1976 as soon as he was weaned, his doctor insisted that we feed him only Nutramigen it was the only hyperallergenic with complete nutrition.  Enfamil and Similac were not acceptable if we wanted him to get healthy.  For one thing they had no  choline back then. Given the lawsuits against them now, he was right. He spent about 6 months on the Nutramigen formula exclusively and weaned off of that to a gluten free diet and thrived. He also predicted that by kindergarden the teacher would beg us to put him on Ritalin, which he took all the way through High School.  
    • knitty kitty
      Check the label and tell us what kind of B12 is in your gummies.   If it's Cyanocobalamin, switch to a methylated (active) form of B12.   Some of us need to take the active form of B12 because our bodies have problems turning other forms of B12 into the active methylated form due to MTHFR genetic variations.   Take a B Complex supplement, too, because B12 needs the other B vitamins to function properly.
    • Barrie9
      Hi! I've been gluten free for years. No surgery,  but have dumping syndrome symptoms,  particularly if I've eaten a lot of FODMAP foods, or xanthan gum, or any other gums that are in many gluten free foods. You may want to stop eating foods with gums and see if that helps!
    • knitty kitty
      @Zoe26, Has he been checked for vitamin deficiencies?    Is he pulling up to standing position?  Does he crawl? I ask because delayed development can be associated with nutritional deficiencies.   Having a hoarse low voice is symptomatic of Thiamine deficiency in children and adults.  Complete loss of voice is possible, too.   "He's extremely lethargic, barely moving."  This statement really worries me.  Thiamine deficiency can cause fatigue and loss of energy like this.  Thiamine deficiency can be serious in small children.  Do mention this to the doctor. It's horrible you and your son had to wait so long for an appointment.
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