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Ursa Major

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Latest Celiac Disease News & Research:

Everything posted by Ursa Major

  1. Ursa Major
    The problem with beer is, that it has gluten! It is made from barley malt. Therefore, if you are on a gluten-free diet because of gluten intolerance, you will need to drink gluten-free beer (yes, there is such a thing). But apart from that, many of us find that we can't tolerate alcohol, either.
  2. Ursa Major
    Those were the exact symptoms of my oldest granddaughter. My daughter knew about her other intolerances (dairy, soy and some combinations) and had eliminated those years ago. But when gluten was eliminated, Emily started gaining weight, and the dark circles under her eyes disappeared within days. imagine, it would be a good idea to have your daughter tested...
  3. Ursa Major
    Actually, up to 40% of people with celiac disease have unexplained weight gain, rather than weight loss. Those are the ones that have the hardest time getting diagnosed, as doctors look at them and refuse to do the testing. I am a good example of that, and there are several others here who had the same problem.
  4. Ursa Major
    Leia, it sure sounds like celiac disease to me. And you are right in saying that destruction of the villi is the end stage of celiac disease. Most doctors won't diagnose you with celiac disease until that happens. It is ridiculous. If you have taken prescription vitamin D, then that could be why you don't respond to treatment. The prescription vitamin...
  5. Ursa Major
    The gluten-free products from Bob's Red Mill are produced in a separate, gluten-free facility. It is likely that he is intolerant to one of the ingredients, and his reaction has nothing to do with gluten.
  6. Ursa Major
    You say that the tests for dairy and soy were negative. If those were allergy tests, they mean nothing at all if he is intolerant to them. Allergy testing will NOT pick up intolerances, especially with a delayed reaction. Meaning, that your son might be intolerant to soy, dairy and gluten, regardless of tests that have been done. Why wait for the test...
  7. Ursa Major
    Did your doctor take biopsies? Often it is not possible to see the damage just by looking with a camera, you can see it only under a microscope if the damage is just beginning. So, your biopsies may still be positive, you won't know until the lab report comes back. Even with positive blood work, your villi may not be destroyed to the point yet...
  8. Ursa Major
    You are right, your son's celiac disease tests were probably false negatives. Those tests are notoriously unreliable in children under six anyway. The best test at your son's age would be to try a gluten-free diet. His symptoms could definitely all be caused by celiac disease, or a dairy and/or soy intolerance, or a combination of any of those. After...
  9. Ursa Major
    I am not saying the test is worthless in general, just not terribly reliable much of the time. But if somebody has been on the gluten-free diet for several months, it certainly is worthless. I agree with gfp though that celiac disease is much more than damaged villi. And most doctors won't even listen to you and tell you its all in your head if you claim...
  10. Ursa Major
    The problem with that is, that often the damage is there, but not severe enough to be visible to the naked eye. In which case the camera will not help in finding damaged spots. Too many GIs have claimed that a person is fine and doesn't have celiac disease because of what he/she has seen with that camera. In some of those cases the lab found sufficient damage...
  11. Ursa Major
    The DQ8 gene is one of the two main celiac disease genes. The gluten-free diet was making you feel better. Your blood tests and biopsy could have been false negatives, as those are extremely common. The blood tests aren't all that reliable, and the biopsy is hit and miss (and often miss ). It is VERY easy to biopsy an undamaged spot in your intestine, even...
  12. Ursa Major
    There are many possible symptoms of celiac disease, about 200 of them. Here is a link that lists some https://www.celiac.com/articles/1106/1/Celi...toms/Page1.html. It leaves out things like weight GAIN and constipation, which can also be symptoms. Most doctors will not suspect celiac disease unless you have the 'classic' symptoms of weight loss, anemia...
  13. Ursa Major
    Quite a few people here have gone back on gluten in hopes of getting a proper diagnosis. Some ate gluten for several months, and still got negative test results. In order to have even a slim chance of a positive test, you would have to eat three to four slices of bread a day for at least six weeks after being off gluten for a month, in my opinion. If...
  14. Ursa Major
    Sandra, it sounds like your depression could be caused by either other intolerances, or vitamin/mineral deficiencies. You might want to get tested for deficiencies, so you know where to supplement. Vitamin D, ferretin (iron), magnesium, vitamin B12 and B6 come to mind. I disagree with taking medication. But it might be helpful to see a counselor, to help...
  15. Ursa Major
    After being gluten-free for five months, it is extremely unlikely that your son's tests will be positive. Five months should have been enough time for a kid to heal, and two weeks back on gluten will not be enough to destroy his villi again, and give him positive test results. I am afraid he is suffering for nothing, and that GI is clueless about celiac...
  16. Ursa Major
    Thanks everybody. I am slowly but surely getting better. It's been almost three weeks that I had the stomach flu. But I still get dreadful stomach aches, and on and off D. I saw my naturopathic doctor last week, and I am now taking powdered pro-biotics several times a day in water. I am sure it is helping, as the D finally started letting up the day after...
  17. Ursa Major
    Why doesn't your doctor think you have celiac disease, did she do the tests for it? Or is she just guessing? If you haven't had the celiac disease tests yet, it would be best if you had those before trying the gluten-free diet. Because if you feel better on the gluten-free diet, she may then want to run the tests. But since you need to be consuming gluten...
  18. Ursa Major
    Yep, definitely one of the most common celiac disease symptoms! I hope you will remember what you feel like when purposely glutening yourself, and won't do it again.
  19. Ursa Major
    Usually, if somebody has the tendency towards celiac disease, it needs a trigger to activate those genes into full-blown celiac disease (like illness, accident, pregnancy, severe stress). The chemo could well have been that trigger, despite of what the doctor says.
  20. Ursa Major
    I never had a pediatrician for any of my children, and none of my kids have a ped for their kids. Why don't you ask your family doctor/GP to order the tests for the kids? If I was you, I wouldn't ever go back to either one of those ignorant pediatricians.
  21. Ursa Major
    My theory is that it might be the reason why so many of us can't tolerate dairy. It would make sense, don't you think? Of course, cows are fed soy and corn more often than wheat. One of my son-in-laws, who's family owns a dairy farm says, that a lot of those environmental freaks demand that cows are fed soy, because they WANT cow's milk to contain soy...
  22. Ursa Major
    Yes, gluten is definitely in your breast milk if you eat it. The only way to have a gluten-free baby would be for you to avoid gluten as well.
  23. Ursa Major
    Hi Kim, and welcome to these boards. Your son has celiac disease, which is autoimmune. NOTHING can cure it, he absolutely needs to be on a gluten-free diet for life. By the way, Crohn's disease usually responds favourably to a gluten-free diet as well. In fact, many people with celiac disease get initially misdiagnosed with Crohn's, so it is possible that...
  24. Ursa Major
    As I said in another post of yours, a negative biopsy can NOT rule out celiac disease, because undamaged spots in your intestines may have been biopsied, missing the damaged parts (unfortunately, that is a common thing to happen). If your blood tests were positive for celiac disease, you have it and need to be gluten-free immediately. Plus, you appear...
  25. Ursa Major
    Unfortunately, your GI sounds quite ignorant to me. If your blood tests were positive for celiac disease, you have it. A negative biopsy can NEVER rule out celiac disease, as those are hit and miss (and often it is 'miss' ). It sounds to me like you are intolerant to nightshade foods and gluten grains (possibly other lectin foods as well, like me...
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