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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
    Were you on a full gluten diet? Exactly which blood tests were given? I ask because some health providers chose to only give a screening TTG blood tests (it is pretty good and it is cheaper than running a full panel). This TTG test catches most celiacs, but not all like me. ?. So, unless you had the full panel (TTG, EMA, DGP — both IgA and IgG versions),...
  2. cyclinglady
    Is it insanely itchy (hallmark of DH)? The rash could be anything, but if it is DH, then keep in mind that it can take months to years for the antibodies in the skin to dissipate. It can show up even if you have not been exposed to gluten for a while. I do not have DH, but I can suggest that you read through the DH section of the forum for valuable...
  3. cyclinglady
    Those fast food joints are readily found along the interstate in California, Arizona and Nevada. Look online for the gluten-free El Pollo options. Tell In N Out you have a gluten or wheat allergy. They have very good allergy procedures in place (newer restaurants that have more than one grille). It is company owned and they pay their employees well. ...
  4. cyclinglady
    When was the last time you had your celiac antibodies tested? This will help to see if you are adhering to the diet or if you are dealing with something else other than celiac disease. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  5. cyclinglady
    Cancer is rare. It usually occurs in older patients who were not aware they had celiac disease for years. If I recall, after a year in the gluten-free diet, your risk for cancer is the same as everyone else in the general population. My PCP has two celiac patients who refuse to adhere to the diet. Those two people have a high risk for cancer. A...
  6. cyclinglady
    I would dump this doctor. Or, if that is not possible, write a letter, send it registered mail and include medical documentation indicating screening for first-degree relatives like this: http://www.cureceliacdisease.org/?s=relatives https://bmcgastroenterol.biomedcentral.com/articles/10.1186/1471-230X-14-36 http://www.gastro.org/press_releases...
  7. cyclinglady
    I just attended a lectures by Dr. Shelia Crowe who was the 2017 President of the American GI Association and Melinda Dennis, MS, RD at the celiac Center at Beth Israel in Boston (she has celiac disease). It was discussed that the celiac antibodies tests are really for helping to diagnose celiac disease. They were not intended to monitor dietary compliance...
  8. cyclinglady
    The gene test may just reveal that you carry the genes, but the proble is that roughly 35% of the population has those genes yet only a few go on to develop celiac disease. Having a first-degree relative puts you at a higher risk for developing celiac disease. It is recommended that ALL first degree relatives be screened even if they are asymptomatic. ...
  9. cyclinglady
    It can a year or long for antibodies to come down (learning the diet, having setbacks, lots of collateral damage). As long as the antibodies are in a downward trend, he is doing well. Keep to the gluten free diet. Avoid oats and honestly, try not to eat out until the numbers are normalized as that result of TTG IgA 875 is very high!
  10. cyclinglady
    You are in luck! With the exception of Las Vegas (usually we are driving through), the other cities even have 100% gluten free dedicated restaurants. San Diego and Orange County have strong celiac support groups. Google their websites for advice too. Fast food found in all those places? In n Out Burgers and El Pollo Loco. Ask what is gluten free...
  11. cyclinglady
    https://www.celiac.com/forums/ Forum members are not professionals, but we live the celiac life and can provide you with common sense advice!
  12. cyclinglady
    I just had anemia and no GI symptoms. I went for a routine colonoscopy (am over 50) for a normal cancer screening. The GI ordered a celiac panel due to my anemia. My biopsies revealed a Marsh Stage IIIB and I only had one positive on the DGP IgA. I can get pretty sick (GI issues) now with a glutening because it seems to set off my other autoimmune...
  13. cyclinglady
    Remember that in the Netherlands, the rate for celiac disease is much higher. Here in the US, it is lagging behind a bit in terms of awareness, but it is improving. Definitely Celiac Disease is not commonly found among Hispanic cultures where a large majority of them reside in the US Southwest. The Southwest is famous for Mexican-style food. The rice...
  14. cyclinglady
    What are you eating? Many of our DH members swear that they must eat a non-processed gluten-free diet and often have to reduce iodine temporarily (for some reason it causes issues). Please read through our DH section. Member SquirmingItch and Ravenwoodglass usually offer excellent advice. You can read some of their previous postings. Rice is safe...
  15. cyclinglady
    The celiac blood tests are good, but not perfect. Despite a decade of researchers trying to use just the celiac antibodies tests in order to avoid the endoscopy which is more invasive, the reality is that the British and American GI Associations and all the celiac centers in the world, still rely on the endoscopy for a firm diagnosis. There are reasons...
  16. cyclinglady
    Reactions to alcohol may not just be autoimmune in nature, but due to a damaged gut from an autoimmune disorder. So, hard to say what can be blamed on wine and hard liquor. I know that when either my celiac disease is triggered or my autoimmune gastritis is flaring (no known trigger), I can not drink any alcohol. I follow standard celiac recommendations...
  17. cyclinglady
    Well, you can always post the result here. Include all the lab ranges. We are not doctors, but we can read celiac lab results. Even the pathologist’s report (exact wording) would be useful. I would definitely get a second medical opinion. So, the biopsies revealed a lactose (milk sugar) intolerance. Why would he NOT recommend going lactose free? ...
  18. cyclinglady
    Three weeks is such a short time to expect dramatic healing from celiac disease. The learning curve for the gluten-free diet is steep! Don’t forget, damaged areas can be missed in the small intestine because it is the size of a tennis court! If your symptoms do not improve within six months or so (not perfect, but improved) ask about IBD (Crohn’s) te...
  19. cyclinglady
    The gluten-free diet will work. It is RARE that it does not. Cross contamination is an issue but once you learn the diet, it become second nature. If you can, get the endoscopy. Why? You can rule out other concurrent issues. Some people do not have the option due to financial constraints or long wait times (e.g. Canada).
  20. cyclinglady
    I have read that the high numbers do not necessarily coordinate with a severe damage. I just had a repeat endoscopy done and my DGP IgA was high, yet I had no villi damage. The antibodies tests are good, but not perfect. It is one reason that the endoscopy to obtain intestinal biopsies is still the gold standard. I can tell you that it is nice to have...
  21. cyclinglady
    Sounds yummy!
  22. cyclinglady
    Packing a lunch was what people did 50 years ago. They took lunch to work, school or on a daily adventure (called picnics). Rarely people ate out. People had dinner parties or BBQs. That was “eating out”. My Dad had an extended lunch break at school so that he could go home to eat at hot meal. That is what kids did in the city. I think you...
  23. cyclinglady
    Go to the grocery store, grab some wings, plop them into a hot oven, bake for about 20 minutes, pull them out, brush on some gluten-free BBQ sauce (you do not even have to make it from scratch), bake another 10 minutes or so. Not comfortable with cooking? You tube it. You can learn to do anything with some instruction from a Free You Tube video. You...
  24. cyclinglady
    Did you receive the complete celiac panel? Some celiacs are seronegative and some test oddly, like me. I only had a positive on the DGP IgA (even on follow-up testing), yet I had some severe intestinal damage per my biopsies.
  25. cyclinglady
    I do not get it. You have had a positive and an equivocal on the panel. Okay, no positive to the TTG IgA despite having a normal Immunoglobulin A result. So what? I have ONLY had a positive DGP IgA (even on many follow-up tests after my dx), yet I had moderate to severe intestinal damage per my biopsies. You can not rule out celiac disease at...
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