Jump to content

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 know, it sounds like forever, but it's not. Geez, most of us have taken more than 10 years to get a diagnosis of celiac disease. You are lucky to have found this forum and smart enough to pursue a diagnosis. Whether you have celiac disease or not, something is wrong and you know it! Do not let doctors tell you that it is all in your head! Of course...
  2. cyclinglady
    I missed the low hemoglobin symptom you posted the first time. That was what triggered my GI to order my celiac tests. I already had a genetic anemia, but my low ferritin levels (iron stores) indicated celiac disease. Other doctors dismissed it as a result of heavy periods which I did not have......at least until that last year into menopause. I...
  3. cyclinglady
    Did you read the links? It looks like you only had ONE of the celiac antibody tests. The one you took was also given to me (TTG) and my result was negative like your result. I had Celiac disease which showed positve on a different celiac test (plus, my biopsies supported a celiac disease diagnosis.). I think you need the complete celiac test, plus, you...
  4. cyclinglady
    Many doctors make mistakes. It is up to you to be your best health advocate (hard to do when you are feeling sick, I know !) Ask for copies of the celiac blood test panel. You have a right to your medical records. If you were off gluten, even for a month, that can impact the test results (University of Chicago Celiac Website). Read these links and...
  5. cyclinglady
    To confirm these caring ladies' accurate advice.....read these links regarding celiac blood testing from the University of Chicago's celiac website (a leading researcher in the U.S.). Learn more about celiac disease within this website too! Open Original Shared Link Open Original Shared Link I wish you well!
  6. cyclinglady
    Read our DH section. There is a lot of advice on getting tested. Those with DH often do not test positive on celiac blood tests, but you should start there. Then it is tricky finding a dermatologist who will take a biopsy adjacent to an active lesion. I do not suffer from DH, so please do some more research. Do not take any steroids (even topical). ...
  7. cyclinglady
    I interpret it as one of them being positive! But I am just a Mom who has celiac disease, majored in business and am NOT a doctor. Keep eating gluten until all testing is complete. The next step is usually an endoscopy to obtain intestinal tissue biopsies. Read up on celiac disease on the University of Chicago's celiac website: Open Original Shared...
  8. cyclinglady
    Sorry that you are not feeling well! Celiac disease is an autoimmune disorder (like Lupus, Etc.) that is triggered by consuming gluten. It causes damage to the intestines and can produce up to 300 symptoms. Here is a link to the University of Chicago's celiac website that does a good job of covering all the basics: Open Original Shared Link Post...
  9. cyclinglady
    Here is a link from the University of Chicago's celiac website (leading researcher) that explains the tests (and I do not have to type). Open Original Shared Link
  10. cyclinglady
    No celiac results here. A high WBC can indicate an infection, but we are not doctors here. I am sure your doctor will investigate further. Your thyroid could be off or normal. It is not a complete thyroid panel. Let us know your celiac results. Hopefully, they took a complete panel or a diagnosis can be missed. I wish you well!
  11. cyclinglady
    Here is the complete list: -tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test) -AGA IGA and AGA IgG - older and less reliable tests largely replaced by the DGP tests -endoscopic biopsy - make sure at least 6 samples are taken (Source: NVSMOM -- ) Can the doctor re-take and include the DPG and EMA tests...
  12. cyclinglady
    It would not hurt to test your soy theory. I do well on organic soy-milk. No issues for me and I have been using it for over 20 years. I have Hashimoto's thyroiditis, but eliminating soy never made a difference to my thyroid or my intestinal tract. I would also not eat out for a while. Maybe you are getting cross contaminated....new employees, food...
  13. cyclinglady
    We eat those harsh browns and fries without a problem. I would suspect the added preservatives and would avoid them for a while.
  14. cyclinglady
    Yeah! Eat out!
  15. cyclinglady
    Coconut oil. Too bad about the Silk. I love thick creamy things. Have you tried other brands -- most are runny! Like eliminatiing gluten, it takes a while to forget old favorite foods!
  16. cyclinglady
    Have not been to SD since I was a kid. It is on our bucket list, though! Road an easy 28 miles this morning to the beach. Had a newbie join us. I think she is hooked! Have done many rides in California and Arizona. Would love to do more! When I get my kid off to college, we hope to travel more in our RV and ride. My long-term wish is to ride...
  17. cyclinglady
    Have you been tested for refractory celiac disease? The gold standard for a celiac disease diagnosis is an endoscopy with six or so biopsies after positive celiac blood tests. That is not always possible for various reasons for many folks. Those folks often find healing with the gluten-free diet. But if you are still struggling after being gluten free...
  18. cyclinglady
    Honestly, too, I would lay off any alcohol at least until you are feeling close to 100%. Alcohol is hard on a damaged gut.
  19. cyclinglady
    Can you get a new GP? Any doctor who refuses to do a thyroid panel must feel they are not qualified to interpret the results. That is just my opinion, Geez Louise, he should be able to consult with other doctors in the office or an online doctor's forum (they are there on the Internet!).
  20. cyclinglady
    Wait for the test results. If negative, ask for the other tests on the celiac panel. Keep eating gluten though and ask for the GI appointment/referral. That doctor can reorder the panel (all or a portion). Again, if you go this route, keep eating gluten! Or you can go gluten free now and forget about a formal diagnosis. I wish you well!
  21. cyclinglady
    Karen is right about kisses. Luckily, my hubby is gluten free too! Some of your symptoms seem to describe possible food intolerances. In the beginning (about a year) I could not tolerate Xanthan Gum (an additive common to gluten-free baked goods). Quinoa was hard to digest as were nuts. I felt better going grain free for a while. This works better...
  22. cyclinglady
    Any medical doctor can order the tests for celiac disease. You do not have to wait for a GI to order them. Here is the list. Since you have Hashi's and Diabetes, I would ask for the complete list instead of just the screening one (TTG and total serum IGA are the common screening tests). If the entire panel was not ordered, my diagnosis would not have...
  23. cyclinglady
    A person with celiac disease can take up to one to three years for intestinal healing -- less perhaps, if you are a child. Perhaps you were not glutened -- just freaked out due to someone's spit getting into you! There is a steep learning curve to going gluten free. Chances are you probably have had gluten exposure eating something else. If you...
  24. cyclinglady
    Hey, Dave! What exactly was "all the rest?" Did you confirm that you took the complete celiac panel (see NVSMOM's list)? My IGA was high but only one of the DPG tests was positve. Both my TTG tests were negative and those are the used the most. If my doc had not order the complete panel, then I would still be searching for a diagnosis.
  25. cyclinglady
    We love Stubbs! Their chili mix is the basis of my doctored up famous chili and their wing sauce is so good!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.