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Ursa Major

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Latest Celiac Disease News & Research:

Everything posted by Ursa Major

  1. Ursa Major
    The bloodwork and the biopsies have been shown to be extremely unreliable in young children (and aren't all that reliable in adults, either). If your son has the genes and has obvious symptoms, I say that the villi aren't destroyed yet to the point of being able to get an 'official' diagnosis, but it is bad enough for him to be sick. If he was my kid...
  2. Ursa Major
    There was a thread a while ago about this, and I believe some of them were safe, but not all. Maybe you could try doing a search to find that thread?
  3. Ursa Major
    Anemia and weakness are two very common celiac disease symptoms. So is a vitamin D deficiency, and all the other problems you are describing in both you and your son. That he even at the age of 10 months already had subtle blunting of the villi indicates that by now it may be severe. Personally, no matter what the bloodwork for either one of you says ...
  4. Ursa Major
    Apparently, you have a pretty ignorant doctor. Whether it is actually celiac disease or gluten intolerance is irrelevant, you simply DO NOT EVER outgrow it! If she is gluten intolerant now, she will always be gluten intolerant. So, she needs to give up on that idea and accept the fact that she has to be on the gluten-free diet for life. No more testing if...
  5. Ursa Major
    Prayers have been said on his and his family's behalf.
  6. Ursa Major
    Have you eliminated dairy and soy from your diet? They could possibly be the cause of your ongoing problems. And are you eating enough saturated fats? Because despite the negative press saturated fat is getting, it is essential for every cell in our bodies. The very best source of saturated fat is cold-pressed, unhydrogenated coconut oil. It is the most...
  7. Ursa Major
    Carlson cod liver oil is lemon flavoured, and really doesn't taste bad. My husband claims it tastes great, I wouldn't go that far myself. But I am one of those people who will absolutely not take anything that tastes bad (I just can't make myself stick with something I hate). So, if I've taken it for two years now, you better believe it tastes okay!
  8. Ursa Major
    As previously mentioned, those blood tests are extremely unreliable in children under six, and especially in babies. The best test is the diet response. You know that gluten is making her sick, so just don't give it to her, and you'll have a happy, healthy baby! I also wouldn't give her any dairy for a long time yet, and the same goes for soy. Eczema...
  9. Ursa Major
    Unless you live quite near the equator, you won't get enough vitamin D through sun in the winter, no matter how long you stay in the sun. The best and healthiest source of vitamin D is still good old cod liver oil. And there is a good tasting one now that even tastes good, not fishy. I am taking Carlson cod liver oil, and went from 24 to 150 within a year...
  10. Ursa Major
    I completely agree with Sarah. If your daughter got better being off gluten, who cares about those test results! They are probably false negative, as that is extremely common with little kids. Just end the agony and put your little one back on the gluten-free diet, so she can feel well, grow and be happy. Because the next problem will likely be 'failure...
  11. Ursa Major
    zcc, if you initially felt better, I believe you truly have a gluten problem. Try eliminating not just lactose, but rather all dairy, that might help. Also, try eating only foods that are naturally gluten-free for starters, like vegetables, meat and fruit, and cook your vegetables well, to give yourself time to heal. Don't add in all the gluten-free replacement...
  12. Ursa Major
    Your present problem could be a couple of things. First of all, when you get glutened, you might feel sick for up to two weeks just from that. You also sound like you might be going through gluten withdrawal. Yes, that's right, withdrawal, like drug withdrawal. With people who are gluten intolerant, gluten can act like an opiate on the brain, and you can...
  13. Ursa Major
    A stem cell transplant is one of the most dangerous medical procedures to do, and should only be attempted in the most desperate of circumstances. You have to first, with extremely high doses of chemotherapy, completely wipe out the immune system, before the foreign stem cells will be injected. And then, if they don't take, the patient will die a horrible...
  14. Ursa Major
    Well, maybe his villi weren't destroyed to the point of having a positive biopsy yet. Or maybe, even with 7 biopsies, they still missed the damage (which isn't unheard of by far). Or maybe his damage is mostly in other parts of the body, not his gut. I say, in your dad's case, going gluten-free is the next step to help find out if it makes him feel better...
  15. Ursa Major
    Gluten intolerance is NOT an allergy, and therefore gluten will never show up in allergy testing. Allergy testing is completely useless to determine gluten intolerance.
  16. Ursa Major
    We went with Royal Caribbean last year in January, and it was great. Make sure you talk to the maitre d (forget how you are supposed to spell that) as soon as you are able to, to avoid problems before even the first meal. I had a schedule, where the hostess would come to my table every evening after dinner to check the menu for the next day with me, and...
  17. Ursa Major
    Rachel is right, you are one of those unfortunate people who have celiac disease with all the internal damage, but without any obvious symptoms. But believe me, by staying gluten-free you will avoid dying about 20 years ahead of your time of some form of intestinal cancer, 100% guaranteed. That sounds extreme, but is true. I did a google search on angioedema...
  18. Ursa Major
    There you go, even more confirmation that she probably has it! And yes, there is such a thing as non-celiac gluten sensitivity. The symptoms are just as bad, the treatment is the same, but test results (other than with Enterolab) will always be negative.
  19. Ursa Major
    Well, I've had so many PMs asking for this recipe, that I think I better bump it up!
  20. Ursa Major
    The celiac disease tests are extremely unreliable in kids under six, and yield many false negatives. If you have suspected celiac disease, she probably has it. In which case a gluten light diet will keep damaging her bowels until she gets really sick at some point. It would be much better if you just put her on a 100% gluten-free diet, in order to avoid that...
  21. Ursa Major
    All of your symptoms could be caused by celiac disease. And yes, a vitamin D deficiency is extremely common for people with celiac disease, and one of the obvious symptoms. Canker sores, bowel problems, depression, fatigue, osteopenia/osteoporosis, deficiencies in vitamin D, ferritin (which you should have checked), calcium, magnesium, B12 etc., insatiable...
  22. Ursa Major
    False negatives for both blood work and endoscopy are common for kids your daughter's age. The best test for young children is trying the gluten-free diet. So, it is obviously your choice, but if it was my child/grandchild I would just put her on the gluten-free diet and see if she improves. Plus, it will be so much easier for you not to have to worry...
  23. Ursa Major
    Georgie, I've never heard that a blow to the head can cause hypo-pituitary! I was hit by a car when I was 15 (severe concussion and fractured scull), and everything went downhill from there. Very interesting. By the way, eating apples will lower blood pressure (people with low blood pressure shouldn't be eating them), and intake of omega 3 fatty acids...
  24. Ursa Major
    Having a fasting blood sugar level of 105 once means nothing. And in fact, it is not even overly high at all. I wouldn't be too concerned. If you find that you consistently have a fasting blood sugar over 90, you may want to limit your sugars (a good idea anyway). By the way (in case he told you otherwise), a blood sugar level of around 120 (even the odd...
  25. Ursa Major
    You asked about bipolar and celiac disease being related. Yes, gluten can affect the brain in scary ways, it can cause people to be falsely diagnosed with bipolar, schizophrenia (due to gluten acting like an opiate and causing hallucinations) and, most commonly, depression. But since your daughter in law is now on a gluten-free diet, bipolar is probably...
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