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ERH

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ERH

  1. ERH
    His intentions were probably good, but pretending to be celiac can cause a lot of damage for those of us who really are celiac. Non-celiacs make exceptions and aren't that cautious about having a total gluten-free meal which creates the impression that it really isn't that important. The "a little bit won't hurt" impression is very destructive. Waiters...
  2. ERH
    Have you discussed Refractory Sprue with your doctor? Even with a gluten-free diet, celiac symptoms continue and other treatments are required. The odds are small ... but it happened to me. Took about two years before everything was under control (and I still have some symptoms when I shouldn't) but it took more than just a strict gluten-free diet.
  3. ERH
    Great video -- explains Celiac Disease in a friendly, informative way. Anything that helps people understand is a good thing!
  4. ERH
    Some people get mesmerized with their illness and talk about it endlessly ... but you don't sound like one of those people! It is important to give your family and friends an overview of what being Celiac does to your body and future health so that they will understand why you have to closely regulate your diet. After that, when food choices become an issue...
  5. ERH
    Even doctors can be skeptical about the effect of "just a little gluten." It's ignorance! Even if you didn't have the overt symptoms, your intestines are damaged by even a few crumbs. Ignore the skeptics and be smart -- stick to an absolute gluten-free diet and spare yourself the "few days" of symptoms -- more importantly, spare yourself the specter...
  6. ERH
    There are worse things that could happen to your family than going gluten-free with you! You are probably the "shopper" so stop buying those gluten foods!! Your kids can survive by having some favorite gluten-foods at school, when they are out somewhere, or at other people's homes. As you adjust to converting your home to gluten-free, you will find dozens...
  7. ERH
    Basic new way of thinking about food: Read the ingredient label every time for processed food. There are many new gluten-free mixes, cans, boxed foods at the market now -- these are safe because the label is part of the new federal law and companies are very careful because of the risk of fines or censure. Foods without the Gluten-free label are risky because...
  8. ERH

    ARCHIVED New here

    ERH replied to kim01's topic in Coping with Celiac Disease

    Two comments that may help. I am a refractory-sprue patient (Celiac to the extreme) in remission, so the gluten-free diet is finally working for me now. The damage to my villi, however, has created some additional problems that have to be carefully managed. Artificial sweetners (any of them) and lactose in even small amounts creates an almost instant and...
  9. ERH
    You mentioned an MRI, so you saw a Neurologist? Multiple Sclerosis is an auto-immune disease just like Celiac and it's not unusual to have both. I do. The "foot drop" is definitely a neurological symptom, ditto for ataxia. The tingling and needle-sensations in feet and legs are also classic MS symptoms. Given my experiences, I would emphasize and pursue...
  10. ERH
    Kim, I had the same unrelenting diarrea and other symptoms (nausea, weakness, etc.) and was down to 89 lb. After four hospital admissions in less than six months, I went to the Harvard Medical Center in Boston -- Beth Israel Hospital, Celiac Research Center -- and confirmed that I had REFRACTORY Celiac Sprue. That is a rare type of Celiac disease that...
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