Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

cyclinglady

Advanced Members
 View Profile  See their activity

  • Posts

    9,348

  • Joined

  • Last visited

  • Days Won

    396

 Content Type 

Profiles

Forums

Events

Blogs

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

Everything posted by cyclinglady

  1. cyclinglady
    I never knew that! Dr. Fasano? He is one the the best!
  2. cyclinglady
    I think the cascade starts with the TTG. If positive or barely positive, the lab will run the additional celiac tests. The problem is that some people, like me, never test positive on the the TTG IgA. If my GI had not run a complete celiac panel, my diagnosis would have been missed. If you strongly suspect celiac disease, consider asking for the additional...
  3. cyclinglady
    Good point! ?
  4. cyclinglady
    Is that an IgA TTG, IgA DGP or Immunoglobulin A (IgA)? The gene test just tells you that you could develop celiac disease but keep in mind that almost 40% of the population carries the genes. Consider going to a GI who is probably more knowledgeable about celiac disease that your PCP. Keep eating gluten until all testing is done.
  5. cyclinglady
    Did they specifically say that the Amoxicillin that was prescribed for your daughter had wheat? Or just that wheat was in the same facility? I bet you took that off the old pharmacy list that had not been updated in a few years. I noticed that Sandoz is no longer on the 2017 list, but perhaps the pharmacist is still trying to verify all those drugs. ...
  6. cyclinglady
    I agree with Karen. She has offered some very sound advice. There are way too many celiacs being diagnosed with refractory or non-responsive celiac disease without trying to determine if hidden sources of gluten are being consumed. Read the link and try the diet. http://www.mdpi.com/2072-6643/9/10/1129/pdf This article does discuss the fact...
  7. cyclinglady
    It probably is just fine. It is certified and at least they are aware of cross contamination per their website.
  8. cyclinglady
    I test positive on only the DGP IgA (even on follow-up testing which I have done several times, but usually when I have experienced “glutening” symptoms. My DGP IgA is usually off the charts, worse than when I was diagnosed. So disheartening! After five years and thinking, like you, that I am doing either a poor job of avoiding gluten, am super sensitive or...
  9. cyclinglady
    Jamie, You have been a member for a while now. I assume you have been strictly gluten free which indicates that celiac disease or a gluten sensitivity might not be the root cause of your current problems. Ennis did ask about whether or not you have been scoped, scanned and checked for cancers, autoimmune issues, parasites, etc. Hard to imagine that...
  10. cyclinglady
    I am not a doctor or a dietitian, but it sounds like you are starving yourself (but I do not know how tall you are, but losing muscle is NOT good). Why are you NOT taking your thyroid hormone replacement? It is not a medication, but a replacement. Hypothyroidism can cause havoc in all areas of your body. What does your doctor say? What is the cause...
  11. cyclinglady
    I am not discounting your symptoms at all. It is just that your lab tests do not match up for things like anemia, b-12 deficiency or low iron stores. Celiac disease has over 200 symptoms attributed to it. The problem is that many symptoms for autoimmune diseases often overlap. Fortunately, there are antibodies testing and biopsies which can diagnose celiac...
  12. cyclinglady
    I am not a doctor, but there is not an issue with your vitamin levels based on the tests you posted. You are taking supplements that you probably do not need. You can decide to 1) save money and stop taking them provided that you are eating a well-balance diet, or 2) continue to take them because they just make you feel better (placebo effect) or if you...
  13. cyclinglady
    Thanks! I love hearing about plans like these. Unfortunately, I have lots of intolerances, so even eating at a 100% gluten free restaurant does not always agree with me. I do get being sick and tired of cooking. I cook three meals a day. Hot. I feel like Laura Ingalls’ mother from “Little House on the Praire” sometimes. I must say that my family is he...
  14. cyclinglady
    Your endoscopy revealed healed villi? Did the biopsy just show inflammation which could just be attributed to active or healing celiac disease (maybe a gluten exposure?) or was that rule out? I have been gluten free for five years and I have had three celiac flare-ups. Unfortunately, I have never identified the source. Twice it was probably attributed...
  15. cyclinglady
    Welcome Chris! I can assure you that anxiety is common with celiac disease. However, you would think that you would have improved by now. So, that makes me think that either your celiac disease is active or it is something else. It is good that you are getting the latter checked out. You can have more than one autoimmune disorder. Be sure to have...
  16. cyclinglady
    Do you have the package insert? Look at the ingredients. I would doubt they would add gluten to the Liquid form. I found this in the US site and it looks like there is not gluten (last updated 2015). Again, most drugs do not gluten. It is frustrating though how much we have to jump through hoops just to verify. As long as I have the package insert...
  17. cyclinglady
    Can your your pharmacist order the TEVA brand? It has been confirmed to be gluten free by a pharmacist who advocates for celiacs. You might have to pay cash, but it is usually not expensive. Most drugs are gluten free and pharmaceutical companies magically were excempt from the FDA gluten free guidelines (that is another topic......). Usually they...
  18. cyclinglady
    I can tell you that I have never had a positive TTG (either IgA or IgG versions). My EMA has always been negative too, even in follow-up testing. I have ONLY had a positive on the DGP IgA and my 8ntetinal biopsies revealed moderate to severe patches of intestinal damage. I did not even have any GI symptoms! Odd, but true. The TTG catches most celiacs...
  19. cyclinglady
    Welcome! You really need lab ranges, but I will take your word that the results were normal. The Anti-TTG is the celiac test. Did they run an Immunoglobulin A (IgA) test? If that result is not normal, you could be IgA deficient and that tells the doctor that the Anti-TTG IgA test is not valid. Add in the fact that 10% of celiacs are seronegative. Consider...
  20. cyclinglady
    Karen is right. Your doctor should have determined your source of your electrolyte imbalance. It can be many, many things. Celiac disease might not be the cause. Eighteen months on the gluten free diet and your gut should be healed (at least in theory). If celiac disease is the culprit, you may be a non-responsive celiac (somehow still getting gluten...
  21. cyclinglady
    When was the last time she saw her GI or PED for celiac follow-up testing? Seeing if she might be getting some hidden source of gluten in her diet might be helpful. If active celiac disease is ruled out, the GI can look for other issues. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  22. cyclinglady
    Welcome! If you suspect celiac disease, consider getting tested: http://www.cureceliacdisease.org/screening/ However, celiac disease is an autoimmune disorder. It takes often days for antibodies to build and for symptoms to develop. If symptoms are swift, then maybe it is an allergy. I have not heard of BO as a result of celiac disease...
  23. cyclinglady
    Consider getting tested for celiac disease. Having a formal diagnosis can help in so many ways (long-term hospital care, etc.). Learn more at this reputable site: http://www.cureceliacdisease.org/screening/
  24. cyclinglady
    @Posterboy — Knitty Kitty found the same study. Good work! We knew that other Autoimmune issues could raise a TTG result. It appears that an infectious disease can too! @CeliacMommaX2 — While it would be nice to see if she is healed, with this information, you might consider waiting another six months and retesting especially since she has...
  25. cyclinglady
    I would do the endoscopy. Here is why. My DGP IgA was very elevated last year after a gluten exposure (not even sure what I consumed, but I had the flu, a cold, and a tooth infection. Four months after my exposure. I was still off the charts. By summer, I was still struggling with symptoms (GERD, acid reflux, autoimmune hives). MY GI pushed for the endoscopy...
×
×
  • Create New...