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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
    @plumbago Yes, cold urticaria is real! I have had it all my life. Back in the 1960’s girls had to wear dresses to school. I was exempted because I would arrive to school with itchy hives all over my legs and other parts of my exposed body (and here is the kicker — I live in Southern California! ?). Hives made it difficult to swim in the Pacific wit...
  2. cyclinglady
    Keep eating gluten until you see your GI or your test results (biopsies via endoscopy) may be inconclusive. Consider taking this time to bid a fond farewell to some of your gluten favorites. That is what I did. I just had anemia when my doctor suggested celiac disease testing. I waited seven weeks for my endoscopy due to work constraints. By the end...
  3. cyclinglady
    Ah! Your TTG (Anti-Transglutaminase) was a 31 and not a 3. That is positive, along with your EMA, gene test, and biopsy findings. Nothing to be skeptical about, but denial seems to be running strong. I get that! I went in for a routine colonoscopy (am over 50) when my GI suggested testing for celiac disease. I was shocked. But lab tests? Hard to...
  4. cyclinglady
    What was the range for the TTG? It might not be positive. The gene test is positive, but then 30% of the population has the genes tha that could develop into celiac disease. It is used usually to exclude celiac disease.
  5. cyclinglady
    Welcome! What was the range for the Immunoglobulin A test? It does seem pretty low. Low enough that IGA test may not give an accurate result. Make sure the EMA, DGP and the TTG are run. That is the full celiac panel. The TTG is good, but does not catch all celiacs, especially kids and the very old (like me). Keep in mind that some celiacs are seronegative...
  6. cyclinglady
    Udi’s is tested to under 10 ppm. It should be safe for most. You might be like me and react to Xanthan Gum. Not a gluten reaction, but an intolerance that affects my GI tract. Shar breads do not contain Xanthan Gum, but they do have soy. That said, consider browsing through the DH section of the forum. DH sufferers often need to be on a stricter d...
  7. cyclinglady
    I am glad that her current regime is working for her. Keep your freezer full of cupcakes for her to take to parties. Candy the teacher can keep in her classroom. Our house is gluten-free (me and hubby). We hosted a big sleepover on New Year’s Eve with a bunch of teens. No gluten. They gobbled down the potato bar, chili, and cookies, cakes and other g...
  8. cyclinglady
    Unless your DH is scratched severely and bleeding, topical gluten is not going to trigger a celiac flare-up, even in DH patients. I just heard this from Dr. Sheila Crowe (President of the American GI Association and celiac expert) at a recent lecture here in California. Also, fellow celiac disease/DH suffer, Melinda Dennis, RDN, MS out of Harvard said the...
  9. cyclinglady
    I am sorry that your daughter has both celiac disease and Crohn’s. Yes, Crohn’s can cause villi damage, but the celiac antibodies testing sure supports that she also has celiac disease (her results are solid and her Crohn’s would not cause such elevated numbers). Luckily, celiac disease can be managed on a gluten free diet. Healed on a gluten free diet....
  10. cyclinglady
    Daniel, Your Immunoglobulin IgA test was high (out of range), but that is just a control test used in celiac testing to determine if ANY IgA tests (like the DGP IgA or TTG IgA) are valid. Any elevation does not mean you have celiac disease. You just have an immune system that is on high alert. It was just one test captured in time and may have been...
  11. cyclinglady
    Well, it probably will not show any damage from celiac disease if you have been on a gluten free diet, but it could help determine the cause of your current IBS-like symptoms. Things like SIBO, H.Pylori, Crohn’s or Ulcerative Colitis should be ruled out. I just had a repeat endoscopy after five years. I was having lots of issues. Even my DGP I...
  12. cyclinglady
    Like Karen, I think a follow-up visit to a GI or PCP to get a full celiac panel is in order. He should be checked for vitamina and mineral deficiencies which are all part of annual celiac disease follow-up care as recommended by the American Gastroenterologist Association and the leading celiac centers. http://www.cureceliacdisease.org/faq/how-often...
  13. cyclinglady
    Congratulations on your pregnancy! Hard to say how high your results are, but they seem high if you were basing it on my lab’s ranges and the fact your doctor said he was 99% sure you had celiac disease. Do you have the lab ranges? I agree, I would not want to do the biopsy while pregnant. I would not want to even do a gluten challenge o...
  14. cyclinglady
    It should be gluten free. The cakes are designed for low carb dieters (keto, diabetics). Just be careful with the substitute sugar — Erythritol. Your body can not digest it, hence fewer calories. Maybe not good for a person with GI issues. Go slowly!
  15. cyclinglady
    Why would I take immunosuppressants? I never had an organ transplant and I do not have an autoimmune disorder that recommends taking them. I would strongly recommend getting a second opinion if you have had a recommendation from a medical doctor to take an immunosuppressant when you do not have a diagnosis of anything that may require it. There are risks...
  16. cyclinglady
    Why not trial a gluten free diet for six months? Despite your negative biopsies, you have the potential (genes), and a positive on the celiac panel, which might indicate that you have Non-Celiac Gluten Sensitivity. My hubby went Gluten Free per the advice of my allergist and his GP almost 20 years ago. It worked. The gluten free diet might help you too...
  17. cyclinglady
    I think you should discuss most of these questions with your doctor. At Celiac.com, we are a community of members who can only offer our own experiences with dealing with celiac disease and tips about maintaining a gluten free diet. We can not diagnosis you on the internet. In order to get a definitive celiac disease diagnosis, you would need an endoscopy...
  18. cyclinglady
    Get tested! You do not have to have any GI issues. I did not. DO NOT go gluten free prior to testing! Unless.....you have no health insurance and can not pay for testing. Guess what? I started getting fractures. My cold urticaria resolved after dealing with it all my life. (Hard to ski, but I did!) I started developing additional autoimmune disorders...
  19. cyclinglady
    Welcome! The first thing you can do is to get your lab results. With what you presented, you could have celiac disease or the drug may have damaged your small intestine or both. Who knows? Keep in mind that some celiac are asymptomatic and that symptoms can overlap with other illnesses. I had no GI issues when I was diagnosed.
  20. cyclinglady
    Why not eat sugar? Going gluten free does not mean you have to give up sugar or even simple carbs. Old timers, like me, will advise not eating out and to try to avoid processed foods. Anything that you can do to expedite healing with nutritionally dense foods is best. But heck, you deserve a treat! I love Endangered Species Chocolate with Coffee...
  21. cyclinglady
    Welcome! Since your result is inconclusive, see if your doctor can order the entire celiac panel, if they only ordered the TTG: http://www.cureceliacdisease.org/screening/ How was your Immunoglobulin A (IgA) test? When used during celiac testing it hellos validate your results. What led you to be tested?
  22. cyclinglady
    Consider not packing her a sandwich for lunch. It takes time to forget what wheat bread tastes like. I send my kid off to school with a thermos filled with leftovers (chili, soup, tamales, etc.).
  23. cyclinglady
    You need to get copies of his lab results (good practice). What celiac tests did he have? The common and standard screening TTG IgA is good but does not catch all celiacs (like me) or small children. Best to have the EMA and DGP tests as well while he is on a gluten diet for 8 to 12 weeks. Yes, 8 to 12 weeks! It can take that long for antibodies...
  24. cyclinglady
    You might not have had the entire celiac blood panel. I would get copies of your lab tests to confirm. The tests include DGP, TTG and EMA. Did they check you for an IgA deficiency? It is a control test that validates the celiac blood test results. And Ennis is right, some celiacs are seronegative. Best to get your records because with the information...
  25. cyclinglady
    I am glad that your son has improved on the gluten free diet! 1. Two to four weeks is enough time for an endoscopy to capture any damage. It is much longer (8 to 12 weeks) for the blood tests because it can take that long for antibodies to show up in the bloodstream. 2. I would consider asking for the DGP and EMA tests. I personally never...
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