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
    @Docsgirl, From my perspective, the only bullying going on in this thread is from you. Ravenwoodglass is only rebutting some of your abrasive comments. I think she is trying to make sure that future DH suffers who read this thread will make every attempt to avoid gluten before trying drug treatments. Refractory celiac disease and/or DH is very rare...
  2. cyclinglady
    Welcome! Yes! Ask for a Gastroenterologist (GI) referral. A positive on the TTG that is slightly elevated could be celiac disease or another autoimmune disorder. The blood test is just the first step in the diagnostic process. Keep consuming gluten until you see a GI. Do not think that a slight elevation or “slightly moderate” equates to no ...
  3. cyclinglady
    Sounds like you are on the right track, though is hard to say, since everyone has different symptoms. Have you been tested for celiac disease? This might be the time to get the blood test (you would have to get back on gluten right away).
  4. cyclinglady
    Welcome! Genetic testing is used to help rule out celiac disease normally. Why? Because some 35% or more of the population carries the genes that could develop into celiac disease. Only a very few actually do develop it. Perhaps you should consider getting tested. I know my diagnosis has helped others in my family. I also know that my hubby went...
  5. cyclinglady
    @Docsgirl I am sorry that you were diagnosed (from what you have described) as refractory DH. It must be very difficult for you. Thank you for sharing. Celiac.com reported on this one clinical presentation a year ago. I am sharing this so that others can learn: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders...
  6. cyclinglady
    Here is more information: http://www.cureceliacdisease.org/screening/
  7. cyclinglady
    Hey TKO! Every major celiac center recommends a biopsy to diagnose celiac disease. Is there some reason that your PCP will not refer you to a Gastroenterologist when all the leading celiac research centers recommend it? I would suggest printing off diagnostic recommendations and sharing them with your doctor in writing! Do not call and talk to...
  8. cyclinglady
    Celiac.com does have this article on file located under “Publications and Publicity” issued February 26, 2018. I have mentioned it in a few posts (referenced The Gluten Free Watchdog site which lists this article), but those get buried. Go to the topic and let’s talk about it. Add your previous comments. The Gluten Free Watchdog is definitely conce...
  9. cyclinglady
    I am not a doctor, but it seems that despite being on a gluten free diet, your biopsy has shown intestinal damage. Read this link from the Celiac Disease Foundation about your crypt hyperplasia and inflammation: https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/diagnosis/ Exactly which celiac tests were...
  10. cyclinglady
    Celiac disease symptoms can wax and wane. Has she had follow-up celiac testing? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Expect her antibodies to be on the decline, but perhaps not normal yet. Your doctor can determine if her celiac disease is still very active. If it is improving, he/she may look for...
  11. cyclinglady
    I personally do not think the Squirmingitch was rude. Like her, I find it hard to imagine that someone can safely prepare food when they do not have celiac disease (or NCGS) or live with someone who has celiac disease regardless of family status. The risk is too great for me. I am sad that I have had to give up the convenience of easily obtainable food...
  12. cyclinglady
    Celiac disease is an autoimmune disorder that is triggered by gluten. Exposure to gluten causes antibodies to start building. Everyone is different. Some react quickly and others take days for symptoms to occur. Some celiacs are even asymptomatic. Do you have celiac disease or a wheat allergy (which presents differently)? In any case, I would...
  13. cyclinglady
    Something is definitely not adding up. Your previous posting stated an elevated TTG (31) and EMA. Your biopsy was suggestive of celiac if I can recall. No celiac-savvy GI would make you go back on a gluten diet and then do everything all over again. You should know exactly what she wants to test. Either you are not communicating everything correctly...
  14. cyclinglady
    Hi! I will add my two cents to the conversation. I am not a medical doctor. An IgA deficiency test is typically run with the celiac panel. In the case of celiac disease testing, it is used only as a control test. If you are IgA deficient (producing no IgA antibodies) then the celiac IGA tests [DGP, TTG and EMA) are not going to work. The...
  15. cyclinglady
    I would not dream of eating anything at someone else’s house and that includes my own mother. Why? Because unless they have “walked in your shoes”, they have no idea how to safely prepare gluten-free food. It can be risky. I do eat at my Mom’s, but I am there to supervise and assist. She is open to asking questions. After five years, she is getting...
  16. cyclinglady
    Costco has a gluten free spiral ham. It is good and the price is right (this from a previous Honey Baked Girl). Save the bone and leftover pieces of meat for 15 bean soup! Yum!
  17. cyclinglady
    Off subject, but what is your major and how did you decide that major? I have a junior in high school.
  18. cyclinglady
    Wow! She has been through the ringer. Keep in mindthat some 10% of celiacs are seronegative. In that particular case, a GI can go straight to an endoscopy. At the very least, the cause of her reflux should be investigated. I suffered from it and as I mentioned before, it was chronic gastritis and not celiac disease (which is in remission). Reflux can...
  19. cyclinglady
    @Vonney Not all celiacs are deficient in vitamins and minerals. Some celiacs struggle with other autoimmune disorders adding to their deficiencies. I had iron deficiency anemia (low ferritin and hemoglobin) which resolved within three or four months on the gluten free diet and some daily iron supplementation. My doctor checked me for other deficiencies...
  20. cyclinglady
    Hey, this is the place where you can whine all you want! We get it! I am so sorry that your family is not supportive. Do they know that celiac disease is genetic? That they can be asymptomatic and still have celiac disease? I am also sorry that you were glutened! You need to stand up and advocate for yourself. Consider joining a local celiac...
  21. cyclinglady
    Unfortunately, there are no validated tests for Non-Celiac Gluten Sensitivity/Intolerance accepted by Gastroenterology Associations and Celiac Centers. https://www.beyondceliac.org/celiac-disease/non-celiac-gluten-sensitivity/gluten-sensitivity-testing/ There is testing for Celiac Disease which measures antibodies (blood test) and intestinal...
  22. cyclinglady
    I thought that was weird! My bad. Geeze Louise. I should have read your posting better. ?
  23. cyclinglady
    I am so sorry that your daughter is going through this! My child does not have celiac disease, but I do. My advice is to NOT eat out for the next six months, until her symptoms have improved, or her antibodies have normalized. Try to focus on non-processed foods. Have some gluten-free goodies on hand (frozen cupcakes and I know this is contradictory,...
  24. cyclinglady
    Find out if your celiac disease is actively flaring or not. Your current issues may not be related to celiac disease at all. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  25. cyclinglady
    What? Another multi-network (aka hitting up your friends to meet your sales goals). marketing product?
×
×
  • Create New...