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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
    First, you did not get a complete celiac panel. Second, you were not tested for a IGA deficiency which can affect your results. Third, DH (celiac rash) is not always caught in a blood panel. A special skin rash biopsy is required. I am not an expert in DH, but I suggest you read the DH threads located in our DH section. There are photos and suggestions...
  2. cyclinglady
    I am sorry that you are not feeling well. I do not have DH celiac rash) but there are many here that do. I would suggest reading the DH section of this forum and checking out symptoms and photos that may relate to you. I am so sorry for the loss of your husband too.
  3. cyclinglady
    I am no lab expert, but I am sure they did not run out of blood. The complete panel was not requested. Did you read the lab order? It is right there when they are drawing blood. Or did your NP draw it in his office and then sent it out? Why wait three months to attempt to get retested? Three more months of being on gluten and suffering? I do not get...
  4. cyclinglady
    I used Nature Made found at Costco. It contains 65 mg per tablet. I took it twice a day away from my thyroid meds. It is gluten free and looks to be milk and corn free (says no starch). Your pharmacist should be able to help you for brands in your area. I took about six months to completely resolve my anemia after going gluten free. Then I stopped...
  5. cyclinglady
    Here is a list from NVSMOM Mom: Check for levels of: A, D, B12, Ca, K, Mg, Fe, Zn, Cu, ferritin. Have you read the Newbie 101 thread under "Coping"? It lists a few more tests and has some great tips! Here is the link: https://www.celiac.com/forums/topic/91878-newbie-info-101/
  6. cyclinglady
    Read it. I try to find postings by folks who actually have celiac disease. Those are rare. Hope you are feeling a bit better!
  7. cyclinglady
    My GI thought I looked good visually, but the biopsy proved otherwise.
  8. cyclinglady
    My anemia (iron-deficient) resolved in less than six months on a gluten-free. You will be fine! Keep eating gluten until all testing is complete though!
  9. cyclinglady
    Welcome to the club! Here is a link to a thread found under our "Coping" section: https://www.celiac.com/forums/topic/91878-newbie-info-101/ Keep eating gluten. Your doctor may want to do a biopsy or add additonal celiac blood tests like EMA and DGP. Questions? We are here to help.
  10. cyclinglady
    My ferritin (iron stores) was a 2. I refused the transfusion even when my hemoglobin was at my lowest (7) and that is the number to be concerned about! Taking iron and going gluten-free improved my hemoglobin level fast and the iron stores continued to build for six months. That is when I stopped supplementation. Take that iron with Orange juice for better...
  11. cyclinglady
    Everything that NVSMOM said! I am one of those who had the complete celiac disease panel and had only one DPG test positive. Looks like you did not get that one! My biopsy showed a Marsh stage IIIB. I also have Hashi's (almost 20 years). Anemia was my only symptom too. Just went in for a routine colonoscopy and my GI guessed celiac disease based on...
  12. cyclinglady
    I think Blessed Momma bathes her little ones after they consume gluten is because they are sloppy eaters -- just babies! Her husband does not have to bathe, but he does have to brush his teeth! Yes, just a tiny bit (like in medications or crumbs from a shared toaster, or crumbs in a sponge) can set off an autoimmune response. I think you should read...
  13. cyclinglady
    Have they ruled out Eosinophilic esophagitis (EoE)? But the reality is that you are still healing. It has taken me almost two years to feel well and normal. I had to hit the first year mark before I really saw any improvement. I also lived with a gluten-free husband (gluten-free for 13 years) so I really knew the drill of avoiding gluten. There is a...
  14. cyclinglady
    I am so sorry that you got sick! I would comment on Yelp, FB, or Find Me gluten-free to alert others that is place is not for those with celiac disease.
  15. cyclinglady
    I too have bounced from hyper to hyper. The year just before menopause and my celiac disease dx was the worst. Was stable for a year, now it is acting up again. Hard to medicate. I have some kind of intolerance to Xanthan gum. It does not bother my hubby -- just me. I bake with guar gum. I continue to serve crackers and bread to my hubby containing...
  16. cyclinglady
    I think your Endo is wrong. Just guessing that because your son is tall, he can not have celiac disease. Is this guy still in the dark ages? My friend is tall and slender and has celiac disease! Some folks are over weight and they have celiac disease. BTW, my Vitamin D levels were normal at my diagnosis. Everyone presents differently!
  17. cyclinglady
    Have you been checked for anemia? That was my only symptom at the time of my diagnosis.
  18. cyclinglady
    Hi! Here is some information regarding testing from the University of Chicago: Open Original Shared Link Open Original Shared Link Looks like they prefer to see patients who have eaten gluten daily for 12 weeks for both biopsy and blood test. Unfortunately, your stomach issues will probably return. But getting a diagnosis is important. I have...
  19. cyclinglady
    So sorry that your daughter has celiac disease. You are right to keep her on gluten until you have had the opportunity to talk to the GI doctor. She is pretty young and as you said she is a good eater. Because it was caught early, she might not have the damage that older kids or adults might have. I encourage you to research celiac disease further...
  20. cyclinglady
    Thanks! Please do keep us posted.
  21. cyclinglady
    There are over 300 symptoms of celiac disease. Many overlap with other disorders. The best thing is to get a celiac blood panel and, if positive, then a biopsy of the intestinal tract via endoscopy. Here is a link to the University of Chicago's celiac website that might be helpful. Open Original Shared Link
  22. cyclinglady
    Are you confused with the fact that an artery near the heart is called the celiac artery? Do you have an aneurysm located there? I have not heard about a celiac disease and aneurysm link. There is a link between celiac disease and type 1 diabetes and not type 2. Both celiac disease and uncontrolled diabetes can cause neuropathies but yours presented...
  23. cyclinglady
    Have you researched the drug for side effects?
  24. cyclinglady
    Welcome! Have you been diagnosed with celiac disease or NCGI?
  25. cyclinglady
    Well, I think it is still gluten free. I serve it to my hubby who never reacts (he is my canary!) I do not eat it because I am allergic to garlic. Sometimes tomatoes, part of the nightshade family) bothers me. Also I am intolerant to mushrooms. Have been for 20 years. Just tested it again with some sautéed mushrooms and I got sick. Chances are ...
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