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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 do not understand. You had a biopsy that showed intestinal damage (based on earlier postings this week): "So I was told my gluten antibody blood test came back positive. The second time my biopsy was tested it came back positive a couple weeks ago. I have a followup visit with my GI doc. this week." Since villi damage can be caused by many...
  2. cyclinglady
    Well, an IGA deficiency test should be ordered at the same time as a TTG or before. If you were negative on the TTG IgA, then your GI could have run it after to insure the test result was accurate. But a GI did not run the test. It was at a fair, right? So, they gave you the one best test for the money. So lucky you were screened at all! Most of us...
  3. cyclinglady
    The algorithm starts with the TTG. If very positive (like yours was), it tells the GI that the next step is an endoscopy/biopsies. If the biopsies are positive, the diagnosis is celiac disease. If the TTG is negative, the GI can assume that 1) either celiac disease is NOT likely or 2) order additional tests if he still suspects celiac disease. On...
  4. cyclinglady
    I think you are fine. Your GI followed the normal algorithm and your case fit that algorithm perfectly. Open Original Shared Link Consider yourself lucky. Your GI sounds competent! It is up to you and your doctor to decide if you want a follow-up endoscopy. I think long-time member, Peter waited five years and was completely healed...
  5. cyclinglady
    Welcome to the club you never wanted or thought you would join! ? What you doctor might have not told you is that it takes months to years to heal depending on the amount of damage you have sustained not only to your GI tract, but other areas of the body (celiac disease is systemic). Browse through the Newbie 101 thread under the "coping" section...
  6. cyclinglady
    These are the tests: Open Original Shared Link Try to get the full panel, if you can. It only takes one positive on any one of the celiac tests, to move forward with an endoscopy. Keep eating gluten or all celiac tests will be invalid. Hives? I have chronic hives which are managed on a daily cocktail of antihistamines. Have you tried...
  7. cyclinglady
    Given your circumstances, I would say it is normal and smart of your GI to check for lymphoma which is a very RARE complication of celiac disease. You are fortunate that your doctor seems to be on top of things. I would try not to worry (I know you are). I would worry more, if he did not plan to check for lymphoma. You can develop other Autoimmune...
  8. cyclinglady
    Sure. It is possible. I think the words "a lot of them" might have something to do with it. Your gut can still be damaged even after months of being gluten free. Then there is that Zonulin theory....leaky gut , etc that may be contributing, but as Dr. Fasano (leading celiac disease GI) says we just do not know enough about the GI tract. Three months...
  9. cyclinglady
    Glad you are improving!
  10. cyclinglady
    I am sorry that you are sick. It has been three months which is a good time to follow-up with your GI and get your antibodies checked. They should be on a downward trend. If not, look to your diet. Gluten has a habit of sneaking in! Your issues might not be celiac-frelatd at all. Best to see your doctor. In the meantime, rest, stay hydrated and...
  11. cyclinglady
    I can tell you that it is hard to be patient waiting for test results! You are correct that by being IgA deficient (or low based on the ranges you submitted) the Celiac IgA test may not be accurate. Hopefully, the IgG celiac test versions reveal something. But keep in mind that some 10% of celiacs are seronegative. In that case, a biopsy is often...
  12. cyclinglady
    I do not trust restaurants with gluten free menus -- not without grilling the waiter, manager and chef. I literally get up and head to the kitchen. If I have any doubts, I just order a drink. I often try to investigate the restaurant in advance or look at "Find Me Gluten Free" website, but even then, I look for reviews and ratings posted by celiacs. ...
  13. cyclinglady
    @Fbmb It was not my intent to hurt you. I am sorry. I was trying to cheer you up. Dealing with a life-long illness, like celiac disease is hard, but it can get better. I am not a psychologist or a doctor. I can only speak from my own personal experience and as a friend. Perhaps, my strategy of thinking of positive things to get me through rough...
  14. cyclinglady
    Welcome! Here is testing information. Try to get the complete panel (3 tests). Be sure to get an IgA deficiency test. In this case it is a control test. If you are deficient, the IgG versions (celiac) should be run. Why all? Because these tests are good but not perfect. I test positive only to the DGI IgA, yet biopsies revealed moderate to severe...
  15. cyclinglady
    Welcome! Congratulations! You are doing a great job on the gluten free diet. Really. The celiac antibodies tests are not perfect, it is one reason a biopsy is normally recommended by most gastroenterologists who are celiac-savvy. But your numbers were quite high in the beginning and they have gone down. It can take year or longer for them to hit...
  16. cyclinglady
    You can google and research on your own, but beer is not distilled, but brewed. For this particular beer, they use an enzyme to break down the barley protein (gluten) into tiny fragments. Too tiny for normal testing to measure (ELISA). So, celiac experts agree that they can not be certain that this beer is safe for celiacs. It might be safe for...
  17. cyclinglady
    Here is testing information: Open Original Shared Link Get tested. If negative, your doctor can look for other issues. You can not go by symptoms alone because there are over 300 of them and they all tend to overlap with other diseases. See your GYN for the hormonal issues. No need to suffer!
  18. cyclinglady
    If you are diagnosed with celiac disease, I would follow the advice of the Canadian celiac disease Association. You can see by this thread that this beer is controversial. Ask yourself why you would be willing to take a risk like this? I get the feeling this more than just beer.
  19. cyclinglady
    Stop looking into the toilet unless you are cleaning it! Take a week off from googling health issues. And the next time you post, I would love to see it in the "Anything but Celiac Disease" section talking about what fun you had with your family this weekend. We are savoring a sleeping-in Saturday. Teen is still sleeping. I am online and drinking...
  20. cyclinglady
    Welcome Jenny! KarenG is a long-time member. She has seen it all and has attended several celiac conferences, so she knows her stuff. What we know is that based on celiac researchers and clinicians recommendations, testing for celiac disease first before trying the gluten free diet is best. The celiac tests do require a person to be on a gluten...
  21. cyclinglady
    Not meant to scare, but to educate. ?
  22. cyclinglady
    Doctors: Because you were found unconscious on your bathroom floor, had vomited, had a nose bleed (found in a pool of blood), had/have back pain so that you could not get up, had very low blood pressure, and an a slightly unusual EKG, we are sending you for a stress test. Me: A stress test? My back is killing me. I am a runner, but I do not think...
  23. cyclinglady
    Oh, have a copy of your celiac test results? Bring those too in case anyone questions your celiac diagnosis. I am serious about checking your chart (read it) and noting celiac disease on that eraser board so often found in patient rooms. Bring a eraser board marker! Talk to all your doctors, nurses and ask even for a dietician consult (though frankly...
  24. cyclinglady
    Hi KatieBeth! I think your result is just boarderline, but I am not an EMA expert (what am I saying...I am not a doctor either!) Mine were always negative even in follow-up testing. The EMA is pretty specific to celiac disease, but it is subjective and labor intensive which means it is expensive. But what concerns me is why your doctor did not order...
  25. cyclinglady
    Every hospital is different, but I have experienced gluten free mis-haps personally. In the future, I am going to bring my own gluten-free food and access to the internet (check medications etc.) and post a big note that states if you do not take my health insurance and I am not coding, then get out of my room! Always ask to see your chart. Mistakes are...
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