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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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    • trents
      Lot's of folks would trade places with you with regard to the unintentional weight loss. Seriously, though, I would be concerned about vitamin and mineral depletion due to malabsorption in the small bowel. One thing you can do now to address that which will not jeopardize the accuracy of further testing for celiac disease would be to start taking some high potency vitamin and mineral supplements. Make sure they are all gluten free if you will continue to use them - after diagnosis, that is. Wheat starch is sometimes used as a filler in pills. A multivitamin may not be potent enough. So, I would go for a B-complex, magnesium glycinate (the form of magnesium is important for good absorption and to prevent a laxative effect), zinc picolinate, and D3 (around 5000IU daily). These are supplements we routinely recommend on this forum to newly diagnosed celiacs and in view of your dramatic weight loss it would likely be appropriate for you as well. It often takes around 2 years for the villous lining of the small bowel to fully heal after going gluten free and until then, nutrient absorption will be compromised. The small bowel is the section of the intestines where all of our nutrition is taken up. Keep us posted.
    • terrymouse
      I'm 5'2" so it's weight I could afford to lose. I guess what's concerning is that it's not on purpose, I haven't been active because I don't have much energy, and it's been steadily going down since I started keeping track of it. So I'm not too worried about where I'm at right now, but it's something I'm keeping an eye on.
    • trents
      A classic case of more than one medical problem going on at a time. We often forget that can happen. Are you concerned about your weight loss? Is your current weight too thin for your height, gender and general build?
    • terrymouse
      Thanks for clarifying! I'll put the gluten free thing on hold then. In late december last year I suddenly started having digestive issues I never had before. My stomach started feeling tight most of the time, I got full very quickly, little to no appetite, constipation, I started to feel ill after eating - sometimes a stomach ache, sometimes nauseous, or lightheaded, or heart beating fast. Some things worse than others, I started avoiding fatty foods in general because they made me throw up . I haven't had issues with food like this before, so this is all new to me. I started losing weight because eating was such a chore. I hadn't considered it could be celiac, but my GP added it to the list of things to test for and then referred me to the GI specialist when the results came back positive. They also found a large gallstone, which was causing me pain in the pit of my stomach, so I had my gallbladder removed in march. The pain is gone but otherwise everything else, the tightness and sensitivity and lack of appetite remains an issue, and I'm still losing weight. I was around 200 lb in december, right now I'm 152 lb. 
    • trents
      @Shining My Light, I am not a doctor or a trained medical professional of any kind. However, I was a hospital chaplain for many years and sat in on countless numbers of medical team meetings with doctors and nurses discussing the medical issues of their patients as well as tests administered and interventions applied. What I can tell you is that many diseases can only be diagnosed by running a battery of tests coming at the problem from different angles. It is normal to not have all the tests give a positive confirmation for a given disease. But rather, a diagnosis is arrived at by looking at what the balance of the test results from all angles suggest. This may especially be true of autoimmune conditions. You need to also understand that the degree and number of vitamin and mineral deficiencies and symptomology depends on a number of factors. For instance: 1. How many "celiac genes" are involved? Homozygous or heterozygous? and which genes? DQ2?, DQ8? or both? 2. How long ago was the onset of the celiac disease? How long has it been acting on the body? 10 months or 10 years? That will make a huge difference. 3. How much gluten has the person been accustomed to consuming since onset of celiac disease? The more they consume, the more damage you would expect. 4. What is the age of the person? Younger people have bodies that are more resilient than older people and can fight against disease more effectively. 5. What other health conditions is their immune system being tasked to deal with? 6. What is their general state of vigor? Some people just have stronger constitutions than others.
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