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sbj

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Everything posted by sbj

  1. sbj
    Did you undergo all of the other tests that someone who is newly diagnosed with celiac should have? CBC, nutritional levels, mineral deficiencies, bone density, discussion of symptoms of other auto-immune disorders? Or did your doc simply tell you that you had celiac, tell you to go on the diet, and then shoo you out the door? Some do that - and they shouldn...
  2. sbj
    I'll second what lizard says above. No genetic test by anyone of any type is going to tell you if your child, you, or your husband has celiac disease. A lot of people seem to be getting the idea that Enterolab can 'diagnose' celiac disease - which they cannot. On the other hand, I hate to read about a failure to thrive with your 18 mo - time to get to...
  3. sbj
    It is possible that you are the only one for a variety of reasons. Is it likely? I dunno - there is simply too much that is unknown about the genetics of celiac. The first thing we would have to do is get all 200 members tested for the genetic markers. You coud be the only one simply because we don't know everything about how celiac is inherited and why it...
  4. sbj
    If I understand your question, you are wondering why celiac is not passed on more frequently if it is genetic. I think that is because celiac disease is associated with multiple genes and not just one. That is, celiac disease is a polygenic disorder. (If celiac disease was a single gene disorder then it would be far easier to predict one's chances of inheriting...
  5. sbj
    Sounds like too much liquid in the batter and too many additions. Oven could be too hot. Don't overmix, don't over-cream. Once you have your batter ready don't let it sit too long - all the CO2 will escape. Hope you are having better luck!
  6. sbj
    I eat at home right before I go! And I keep a couple of gluten-free bars in the car. Dessert is a bit frustrating so you might want to try bringing dessert as your potluck entry. Since I am asymptomatic I don't react to cross-contamination but if you do then I think you'd better be super-careful. If cc is an issue then you pretty much can't eat anything at...
  7. sbj

    ARCHIVED Group Letter to Dr. Fine

    sbj replied to Gentleheart's topic in Doctors

    Perhaps some wise people will respond soon - in the meantime ... I vote for a single letter, not email, with all of us adding our names as signatories. I would suggest that it NOT be affiliated with this site in any way (unless the site proprietor agrees to be involved) and that it be short and sweet - see the first post that started this crazy train....
  8. sbj
    Well I hope she starts to feel better! And actually I hope it is something simple like an infection that can be cleared up with antibiotics. It is so very very important to provide every doctor with a complete family medical history. Most people don't keep one or don't have one that is very complete. It's surprising how many people don't know what conditions...
  9. sbj
    I agree with most of what you say except the part about level of risk. Even if you have the genes for celiac that doesn't mean much. Lots of people have the genetic capability but very few actually have celiac disease. This is something I've never quite been able to sort out. If one feels better going gluten free, how does it help to know you have the genetic...
  10. sbj
    "I have been trying to figure out what exactly gene testing is for Celiacs."Gene testing won't tell you if you have celiac disease. Don't be confused by Enterolab or other posts or sites - a cheek swab, stool testing, even a genetic test via blood can't diagnose celiac disease.
  11. sbj
    Your children are at an elevated risk for celiac disease and they should be tested. The celiac blood panel is virtually painless (Accuracy depends on age and other factors but the panel is definitely the way to start.) While the normal risk of having celiac disease is, I believe, about 1 in 133, your first degree relatives have a chance of about 1 in 22....
  12. sbj
    Only being gluten free for one month is too soon for retesting to see any improvement. Someone else mentioned normal testing variation and they could be correct. Keep doing what your doctor is telling you to do and keep an accurate list of symptoms for him/her to review. You should wait at least 6 months for celiac blood retesting. Hopefully you had an endocscopy...
  13. sbj
    I would ask your doctor about diabetes and urinary tract infections.
  14. sbj
    Hi Geoff: I do not think that your chronic fatigue is associated with gluten. When you mentioned mono it seemed quite likely that your chronic fatigue syndrome is associated with that infection. It is quite common and, as you know, very difficult to overcome. Perhaps it is not possible and it is something that you are going to have to learn to manage rather...
  15. sbj
    "A child may have to eat gluten for 4-8 weeks (a gluten challenge) in order to have a biopsy if that child has not been eating gluten for several months or more. A gluten challenge in adults can last three months."This per a well-respected site: Open Original Shared Link I am hoping that your doctor also gave you some advice in this area? If not, you should...
  16. sbj

    ARCHIVED More About Dr. Kenneth Fine

    sbj replied to Gentleheart's topic in Doctors

    Rachel - thank you for sharing your experience. You seem reasonable and I hope you are not getting frustrated. Your point was that elevated levels in the stool could also be due to something else besides celiac -- the posted studies do not refute that. For those who don't improve on a gluten-free diet, obviously, the answer is to keep looking.Misinformed...
  17. sbj

    ARCHIVED More About Dr. Kenneth Fine

    sbj replied to Gentleheart's topic in Doctors

    I've got to find these folks and invite them to my next birthday celebration!
  18. sbj

    ARCHIVED More About Dr. Kenneth Fine

    sbj replied to Gentleheart's topic in Doctors

    "He does not diagnose anything, ...he doesn't tell anyone that that they shouldn't look for other issues."I do not mean offense to those who defend the good doctor. Many of those who use his tests do indeed think he is diagnosing something. That's a simple fact that is easily verified by looking through some of the posts on this forum. And many of those who...
  19. sbj
    When did they start sneaking gluten into vanilla? Why not simply NOT eat anything your family makes for awhile? "Just say no." I think it's okay to say, "I'm sorry, but I have gotten sick too many times. It's just easier and safer this way."
  20. sbj
    Fainting and dizziness could be due to lack of nourishment. Since she is painfully thin this makes sense. Excessive BMs could mean that she is passing food rapidly without absorbing properly. These symptoms are consistent with intestinal damage due to celiac. However, not trying to scare you but my brother had been losing weight to the point that he was...
  21. sbj
    Hi Lauren - good luck with your eyes. Be sure to see an eye doctor and not just your regular intern. Regarding the years of diagnosis comment - I don't understand? When you read on this forum about folks who have gone years without getting diagnosed it is because they hadn't heard of celiac disease and their doctor never tested for it. If you have symptoms...
  22. sbj
    Could be allergy-related, could be rosacea-related, could be related to skin conditions. Blepharitis is common and it is not known precisely what causes it but it is often seen in folks like me with various skin conditions. I suppose it could be related to wheat allergy in some fashion(?). My understanding, basically, is that the glands in the eyelids...
  23. sbj
    Just wanted to chime back in real quick. You are describing symptoms of a lot of abdominal pain. This pain - although it feels like it's in your intestines - might actually be from organs near your intestines. You might have appendicitis or gallstones: Pain may be felt in the abdomen even though it is arising from organs that are close to, but not within...
  24. sbj
    Jason - you need to stop for a minute and think about what Thanksgiving means. It has nothing to do with food or turkey or fun or being the odd man out. Thanksgiving is about being thankful in spite of difficulties! "The Plymouth colony lost half its population its first year. Can you imagine losing half your population and still being thankful to...
  25. sbj
    Gosh, I hate to be a negative-nancy but I sure wouldn't assume that you have celiac just because the diet helped to resolve some issues and you have the genetic capability! Having the genetic capability really means very little - up to 1 out of 3 persons have the capability but only 1 in 100 develop celiac disease. I think it's best used to rule out celiac...
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