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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
    I am sorry that you are still struggling. It is great that your house is gluten free. I personally found that a gluten free home, avoiding non-processed foods as much as possible, eating at dedicated gluten free restaurants only and identifying food intolerances have put my celiac disease into remission based on repeat intestinal biopsies. However...
  2. cyclinglady
    I am sorry that you are struggling to get a diagnosis. With his TTG well over 200, you would think he would have intestinal damage. So, I would be a copy of the GI’s report, along with the pathologist’s report and find out exactly where and how many biopsies were taken. Damage can be spotty and easily missed as the surface area of the small intestine whe...
  3. cyclinglady
    A weak positive is a positive. Toss in your intestinal damage and you have celiac disease! A positive is a positive. Like you are either pregnant or not. My first GI said that I had a weak positive because I tested positive to only one of the celiac disease tests (DGP IgA) on the complete panel he ordered. But I had a Marsh Stage IIIB per...
  4. cyclinglady
    She might have been gluten light or she might have been too young to have developed antibodies. Testing kids under three is tricky. Often the DGP tests are better compared to the TTG when dealing with kids. Was her Immunoglobulin A results in the normal range? If she is Immunoglobulin A (IgA) deficient, any IgA related celiac tests were be invalid. ...
  5. cyclinglady
    I am also a fan! ?
  6. cyclinglady
    Did you have a celiac disease blood panel test run? Any positives? The pathologist only sees the tissue. He can not always determine the source of the damage. So, he writes a general statement. Celiac disease is very common, but other things can cause villi damage too: https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the...
  7. cyclinglady
    I have not been to Mayo or the University of Chicago, but I am older and have two other autoimmune disorders in addition to celiac disease. I have found that gluten exposures trigger not only my celiac disease, but ramps up my other autoimmune (AI) disorders (Hashimoto’s and Autoimmune Gastritis) and Mast Cell Activation issues. My last gluten exposure a...
  8. cyclinglady
    You sound like me. I have celiac disease, Hashimoto’s and Chronic Autoimmune Gastritis. Did your GI determine the cause of your Gastritis? Obviously, H. Pylori was ruled out. Even though repeat biopsies revealed a healed small intestine, I had Gastritis. I was doing a good job on keeping my celiac disease in remission, but my Gastritis? That w...
  9. cyclinglady
    Mast Cell Activation Syndrome is real. Sorry your doctor thinks it is not pursuing. But I guess unless you have daily severe reactions, there is nothing medical staff can really do. I get MCAS reactions (like passing out, hives, swelling, vomiting, etc.). I do have a standing order at the local ER for testing, but have not had to go in in the past two...
  10. cyclinglady
    I think you should consider getting tested for celiac disease in order to help rule out gluten ataxia. Why? I just had anemia. No GI issues with gluten. I never would have guessed that I had celiac disease.
  11. cyclinglady
    My mom has Graves. I much prefer Hashimoto’s! I had a few thyroid swings and it is easier to be hypo than hyper. My Mom has permanent eye damage as a result. If you have Graves, get treatment which may include surgery. Her ferritin levels are normal. My enlarged thyroid and nodules (20 years) dissipated after I went gluten free. Unfortunately, ...
  12. cyclinglady
    Do you know the source of your Gastritis? Is it related to active celiac disease, H. pylori? I have Autoimmune Gastritis (biopsy confirmed) despite a healed small intestine. Avoiding gluten is critical for me as it tends to trigger my autoimmune gastritis and Hashimoto’s (besides celiac disease). When my Gastritis flares, I avoid other foods that b...
  13. cyclinglady
    Did they run thyroid antibodies tests?
  14. cyclinglady
    What do you think about this? https://www.sciencenews.org/article/vitamin-d-supplements-lose-luster
  15. cyclinglady
    Just know that your doctor is not following standard diagnostic procedure for celiac disease. Keep all your medical records and ask him to give you a letter stating you have celiac disease. Someday, another doctor might not honor your diagnosis (like your children’s pediatrician). If you have the diagnosis in writing share it with your pediatrician. ...
  16. cyclinglady
    I agree, but in terms of celiac disease, wheat must be disclosed on the label because the allergy labeling laws. So, if wheat is not listed, it is safe. Take the time to read the FDA recommendations for gluten labeling. It could use some re-work or be expanded for those who have additional intolerances or allegories. Get involved! Contact your congressman...
  17. cyclinglady
    @KimMCG What was the lab range for the Gliadin IGA result? I assume it was any value over 20 since it seems pretty high in comparison to the other tests. Your IgE antibody range must be for some allergy testing (ragweed, cats, peanuts, etc) and not for celiac disease which uses IgA or IgG (Immunoglobulin A or G). Your gliadin result seems...
  18. cyclinglady
    Why do you need to supplement? I can understand Vitamin D, but by now you should be absorbing nutrients from your foods since it has been a year or so since you went gluten free. (Is that correct?) You might very well need to supplement, but is celiac disease the root cause (either still active or refractory)? I think you need to see your GI. It might...
  19. cyclinglady
    Any change in your diet can cause GI upset. Sometimes moderation is best. It sounds like way too much celery. Actually, lots of juice just might be too much. How much celery can you eat at one time before you get sick of it? Or how many oranges? It is easy to guzzle down juice fast but hard to eat three or more oranges at one sitting. Celery?...
  20. cyclinglady
    See the little search box with the magnifying glass? Just query “migraines” and you will find lots of members with comparable migraine symptoms. ?
  21. cyclinglady
    Welcome! There are over 200 symptoms attributed to celiac disease. Migraines are one of them as celiac disease is systemic (not just gut issues). The only way to find out is to get tested. Ask your PCP for a simple blood test: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/
  22. cyclinglady
    Ah, thanks for the clarification. I also have Hashimoto’s. Be on the lookout for Chronic Autoimmune Gastritis which I developed after my celiac disease diagnosis. A repeat endoscopy revealed a healed small intestine, but gastritis. CAG is commonly linked to Hashimoto’s. I wish medical would stop compartmentalizing autoimmune disorders. Keep us ...
  23. cyclinglady
    Hi! An elevated (usually very) can be attributed to autoimmune or types of cancers like multiple myeloma. I do not know your lab range, but your IgA result does not seem very elevated based on national lab ranges. So, no worries. My IgA is very elevated, but stable. I have a couple of other autoimmune disorders and probably have some that are brewing...
  24. cyclinglady
    You can eat out. I try to steer newbies from eating out For a few months, just to help expedite healing. The gluten free diet has a steep learning curve. But I travel as does my husband. You learn to be assertive (but nice) and ask the right questions from the manager or staff. Listen to your “gut”. If you do not feel comfortable, do not eat there. R...
  25. cyclinglady
    Has your husband had a celiac blood panel done? A complete one and not just the screening TTG (most given)? Know that you can have more than one type of anemia. My celiac disease diagnosis was masked by my Thalassemia which is a genetic anemia. My iron-deficiency anemia was often blamed on that and being a women. Lethargy can be due to anemia...
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