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CeliBelli

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  1. CeliBelli

    ARCHIVED Should I Even Bother?

    CeliBelli replied to StephE's topic in Doctors

    The answer is Yes, you absolutely should get tested. For you, and for your children. The hazard of self-diagnosis is you might be wrong, and overlook another serious illness. Or you might be wrong, and unnecessarily subject your son to a life of rigorously avoiding gluten. And as several others on this thread pointed out, there will be times when you...
  2. CeliBelli
    Lycopene, It's been a month since you started this thread, so don't know if your insomnia has resolved or not. I had increasingly severe problems with it until I was diagnosed with Celiac Disease two years ago. At the time, the doctor who diagnosed me made several recommendations to address it. First, no caffeine, at all. Second, nutrient deficiency...
  3. CeliBelli
    Biopsy is considered the gold standard for celiac diagnosis. If you've been gluten-free for five weeks, that could skew the results, depending on the degree of damage you may have had prior to going off gluten. You may wish to also ask for a genetics test in addition to the biopsy, since that won't be affected by what you've been eating. The most highly...
  4. CeliBelli
    Peggy, I highly recommend you get tested again, this time with the newer antibody and genetics tests from a leading lab such as Prometheus or Kimball Labs, or their Canadian counterparts. There is an excellent set of essays by Dr. Scot Lewey elsewhere on this website that discusses genetics testing, which with your family history sounds like a must. ...
  5. CeliBelli
    I agree, I will be stunned if you are not diagnosed with celiac disease. My story is also very similar to yours. The bad news is you will need to keep eating gluten until you can get tested again. I highly recommend you do this, as you will want an official medical diagnosis in hand if you can get one. You may need this dealing with doctors and hospitals...
  6. CeliBelli
    The TTG test seems to have a higher level of reliability. Biopsy is considered the gold standard for celiac diagnosis, so you are doing the right thing in getting that done. If those results are also positive, your son, you, your son's other parent, and any of your other children should also have the genetics test done to determine who else in the family...
  7. CeliBelli
    My recommendation is that you knock yourself out eating all your favorite gluten foods. That's what I did in the last few weeks before my endo, which was the week after Thanksgiving 2007, because I knew afterwards I was never, ever going to eat them again. I ate at my favorite restaurants and said goodbye to pie and pizza and flour tortillas. I went home...
  8. CeliBelli
    Shaunta, Welcome aboard. I was diagnosed just 15 months ago, and I sympathize with you. Researching celiac disease rapidly becomes a crash course in immunology and genetics. I highly recommend that you ask your doctor for a genetics test, either by Prometheus or Kimball Labs, which are two of the best. There are several very good, in depth essays on...
  9. CeliBelli
    I very highly recommend Dr. Jolanta Lukawski, who is director of the Hoag Hospital Women's Health Center and has a private practice in Alisa Viejo. She is an outstanding physician, and if your toddler is outside her scope I am confident she can refer you to someone with the necessary skill to treat your daughter. Her office contact information is: 2...
  10. CeliBelli
    Vickie, I was just diagnosed in December, and understand how you feel. Unfortunately, like most Celiacs, I've found the medical community is woefully short of doctors who understand Celiac Disease, much less specialize in it. The best resource I've found on how to adjust life and cope is a book by a woman Celiac named Jax Peters Lowell entitled The Celiac...
  11. CeliBelli
    ABQ, I was diagnosed in December at the age of 44 and years of health problems. Like others, I can attest to the mental issues that go hand in hand with Celiac. Here are a few thoughts that I hope may be of help. First, the reason you may have tested negative on the antibody test is because you'd already eliminated the most prominent sources of gluten...
  12. CeliBelli
    Raven, I am not suggesting that people who go through all the testing, but who seem to match the Celiac profile, shouldn't try the gluten-free diet as a form of elimination testing. My concern is that there are far too, too many people on this website waving people away from getting the blood work and endoscopy done at all. And that is a mistake. If...
  13. CeliBelli
    Yes, you would be out of line. I am 44 years old. I've had "stomach" pain since I was 17. I've had increasing cold sensitivity and joint pain since I was in my mid-20's. I've had chronic earaches and sinus infections since childhood. Since then, I've been tested several times for Lupus, in addition to several autoimmune panels. I tested positive...
  14. CeliBelli
    Or, if you don't get tested and conclusively diagnosed, you could be reacting to something else that tends to be combined with gluten, like soy. Or, you could actually have any number of other problems that won't get adequately treated. From 10 minutes reading these pages it is evident that there are myriad reasons why peoples tests come back negative...
  15. CeliBelli
    I agree with Meline. Although it is hard to do a gluten challenge, a week is not a long challenge period. If I were you, I'd try it, since it is necessary to be in a full gluten reaction to get accurate test results. Remember, too, that the gold standard for diagnosis is endoscopic biopsy, and all the best research recommends doing this while on gluten...
  16. CeliBelli
    Yes, absolutely. Other people do have it, and it is a telltale sign of Celiac Disease. I have been dealing with this in my hands and feet for years, and was finally diagnosed this December, after going to the next county to find answers when my ankles started swelling and I intermittently lost sensation in my hands, arms, legs and feet. That was all in...
  17. CeliBelli
    I was just diagnosed in December via two Prometheus tests (antibody and genetics) and endoscopic biopsy, which are also crucial. From what I've read, that is the gold standard for diagnosis, and it does require being on gluten so the tests can pick up the full level of your body's reaction, since healing begins and the antibody levels drop very rapidly once...
  18. CeliBelli
    I'm not a doctor, nor do I play one on TV. But I've also just been diagnosed in December, and am dealing with an array of Celiac-related problems. I am amazed daily at how delicate our body chemistry is, and how very badly messed up it can get from this disease. If I were in your position, I would try treatment for Celiac Disease for several months...
  19. CeliBelli
  20. CeliBelli
    I googled Dr. Crowe, and I recommend you do, too. Summary of her presentation to the Charlottesvilli Celiac Support Group can be found here: Open Original Shared Link If I were you, I'd call them back first thing in the morning and schedule with her PA (physician's assistant) at the next available opening. The PA should be able to take your history...
  21. CeliBelli
    I am a recently diagnosed celiac looking for an active support group for adults in or near Riverside, California. Any help will be greatly appreciated.
  22. CeliBelli
    Wendy, He needs to see a good gastroenterologist, one who has treated celiac disease before. (This isn't considered alternative medicine by the way.) If you are reasonably near one of the university medical centers, you might try them. It would be worth the drive. You might also try contacting the support group contacts in your area for recommendations...
  23. CeliBelli
    I am a newly diagnosed Celiac in Riverside, CA. I was diagnosed at the Women's Wellness Center at Hoag Hospital in Newport Beach, CA, but need competent primary care close to home. I am looking for a new doctor in or near Riverside experienced in treating Celiac Disease. I'd be most grateful for any recommendations.
  24. CeliBelli
    I've had swollen nodes for years, since I was kid (40+ years). For years it was mostly in my neck and groin. Several years ago I began getting deep, painful, cystic abscesses in my face. That was one of the things that finally drove me to the next county to find medical care that cared. I just couldn't stand having my face torn up any more. Once I...
  25. CeliBelli
    I was just diagnosed with Celiac in December. The day of my endoscopy/colonoscopy I felt better than I had in years, despite being famished and dehydrated to the point of disorientation. Or I should say, because I was famished I felt better. I hadn't eaten gluten in two days, and already I had begun to feel better. The pain, bloating and inflammation...
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