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cyclinglady

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

Everything posted by cyclinglady

  1. cyclinglady
    I'd say that TTg IGA is negative and would not consider it a weak positive, but....I am not a doctor! ? I do know that each lab has different ranges and you should just compare your results with the ranges the lab uses (not from the Internet). Your ferritin is low and your doctor should find the reason why it is low. Again, celiac disease can not...
  2. cyclinglady
    Those could be celiac symptoms or they could be something else. Just because celiac runs in your family, I would not jump to conclusions. That could be dangerous! For example, my niece presented with celiac disease symptoms. She tested negative but they found that she has Crohn's (not that she can't ever develop celiac disease). While a gluten free...
  3. cyclinglady
    The blood test results are negative (and he had the complete panel). No GI issues (per your posting). What makes you suspect celiac disease?
  4. cyclinglady
    Sure, celiacs can have various intolerances that may or may not resolve with healing. A classic one is lactose intolerance. Corn, soy, and nightshades (e.g. Potatoes) are common. Why? Here is a theory from Dr. Fasano, a leading celiac Expert (PED GI at MA General). Open Original Shared Link i like his lecture and it explanations so many issues...
  5. cyclinglady
    Great that he ran the TTG IGG again, but what about the DGP IGG? That should be run again too as that was elevated orginally too -- they could still be elevated from a glutening. Many doctors think that the DGP test is actually better for dietary compliance. Google it!
  6. cyclinglady
    That is great news! Please make sure a complete celiac panel was taken which includes the EMA and DGP. Do not just trust the doctor's word. See the test results in writing. I would just hate to find that a mistake was made. In any case, make sure they find the root cause of your illness.
  7. cyclinglady
    There really aren't many studies done that follow Celiacs and their levels of healing. Here is an article about a study that I once saw (but can not locate at the moment): Open Original Shared Link As far as diarrhea, being a sign of damaged villi, I can only speak for myself. I had flattened villi (patches) and I had no diarrhea, but only anemia...
  8. cyclinglady
    Dear Weary, I am so sorry that this is happening to you! ?. I get the OCD thing. Are you sure your meds are gluten free (dumb question, but had to ask)? Have other AI issues been ruled out? Did they do a follow-up endoscopy/colonoscopy/pill camera?
  9. cyclinglady
    Did they run a DGP IGA? While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend. I am not making that up. Google it. My DGP was off the charts when I was glutened last summer. My symtoms were severe, yet at diagnosis, I just had anemia. It took six months for...
  10. cyclinglady
    This is an older posting, so I am not sure the original OP will respond. Kaiser is great, but they are all about keeping the costs down. So, they do not allow their first-line doctors to order anything but the TTG tests for celiac screening. Only a GI (or perhaps a higher up specialist) can order an entire panel. If you tested negative on the TTG, and...
  11. cyclinglady
    I am concerned that you are not getting any follow-up care regarding celiac disease or Non-celiac gluten Intolerance. You had elevated antibodies. I understand that your biopsy was negative, but at the very least you should get retested for diet compliance and to check for any deficiencies. I do! Open Original Shared Link You can't really...
  12. cyclinglady
    I would add that you request a full celiac panel (EMA, TTG and DGP). Why? Because the typical screening TTG test is very good, but it does not catch all celiacs (like me). Here's the list of blood tests: Open Original Shared Link
  13. cyclinglady
    You symptoms could be celiac related. It's hard to say, since there are over 200 symptoms attributed to celiac disease. All that you listed could be celiac disease....or some could be related to Hashi's. I had some pretty severe night sweats. You might want to get your thyroid and other horomones (e.g. estrogen, etc.) checked. These can flucuate like...
  14. cyclinglady
    When I fractured two vertebrae doing NOTHING just two months after my celiac disease diagnosis, I was devastated. I could handle the celiac disease diagnosis. Heck, I had been making gluten free food for my hubby for 12 years and I knew the drill. My learning curve was NOT steep! But fractures? Of course, I didn't know that I had developed osteoporosis...
  15. cyclinglady
    I am sorry that your hubby is sick! I am not a doctor, but I would agree that a gluten free diet is probably his best bet for improving his health. Waiting for an endoscopy to obtain biopsies does not seem necessary at the age of 68. But....it is important that he maintains the diet for at least six months to determine if it is working. The gluten...
  16. cyclinglady
    The first test is negative and it's pretty specific for celiac disease. The tTg test, humm.....is hard to read. Your result is less than 2, but the range for being positive is 0 to 3? That's seems weird. So, I don't know. Did you type it correctly? The third test is just a control test insuring the first two IgA tests are valid. This is big...
  17. cyclinglady
    Welcome! I'm glad to hear that you are doing better on the gluten free diet. Perhaps, you have other issues, or maybe you just need to make sure you are not getting any hidden gluten into your diet. Do you eat out? Live with gluten eaters? Eat processed gluten free food? I understand the need for a formal diagnosis. Here is some information about...
  18. cyclinglady
    Welcome. Did they include an IgA deficiency test? A positive on the celiac panel usually requires a referral to a GI for further evaluation (the rest of the celiac panel and/or endoscopy to obtain biopsies). There are over 200 symptoms of celiac disease, so a doctor shouldn't rule out celiac disease because you don't fit the classic celiac symptoms...
  19. cyclinglady
    It can take a year or longer for antibodies to go down. Doctors just look for a downward trend. And symptoms do not always correlate with antibody levels. Some folks have low levels and high intestinal damage and some folks have high antibodies and little intestinal damage. Celiac disease Varies with each individual. That is why you have to sift through...
  20. cyclinglady
    I would still recommend the endoscopy. A firm diagnosis can help : 1) maintain the gluten-free diet and 2) allow for your kids (and all first-degree relatives) to get tested easily. You still can develop other autoimmune issues -- you already have Hashi's like me, so Crohn's is always a possibility and they can check for that as it might have developed...
  21. cyclinglady
    All the tests for celiac (except gene testing which can only rule out celiac disease and not diagnose it) require a person to be in a gluten diet. The time is 8 to 12 weeks for the blood test and four weeks for the endoscopy. I would say a repeat is needed. Make sure they take up to six samples. Humm...were they looking for celiac disease during...
  22. cyclinglady
    I trust Jane Anerson's gluten-free advice. Afterall, she helped us find gluten-free brownies and chicken wraps at Costa's while we were in Great Britian and Spain! ? Open Original Shared Link Seriously, she has DH (celiac rash). I do not. So I do not worry about gluten in my makeup except for sunscreen, hand lotion, and lipstick -- anything...
  23. cyclinglady
    Welcome! I would recommend a biopsy. Yep, you have a positive on the antibodies panel and that warrants an endoscopy. Keep eating gluten until all testing is complete. Open Original Shared Link ?
  24. cyclinglady
    I would not call a 32 on a DGP IGA a "weak positive" (don't know the range and I am not a doctor). What they like to call "a weak positive" is based only one in the panel being positive. That is what happened to me. But in my case, my biopsy revealed villi damage. However, you have been a "on and off" again gluten-free eater. Perhaps getting gluten...
  25. cyclinglady
    The TTG test is really good. Except it is not perfect. It is ordered because if doctors (and insurance companies) could only choose one celiac test, the TTG would be it. (My new insurance company only allows their doctors access to the TTG and only a GI can order the entire panel). The bad news is that it does not catch all celiacs. So, if you test...
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