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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
    Well, not according to all the celiac centers around the world. For a while, they were thinking that a genetic test, a very positive celiac panel and a good response to the celiac diet might be enough to diagnose celiac disease. They definitely have been implementing this in children in Europe. It can work. But for some reason, ( I have not found an answer...
  2. cyclinglady
    I forgot to ask the MOST important question! How is your daughter feeling? Having two autoimmune issues at such an early age can be overwhelming. Consider investigating celiac camp. Imagine a place where everyone is like you and you get to do normal kids stuff. How cool is that? https://www.beyondceliac.org/kids/gluten-free-camps/list/ Do...
  3. cyclinglady
    Yeah, my lab only goes to 200. When I was diagnosed, I recall that my DGP IgA was around 80 (only positive on the panel). My GI stated that my result was “mildly positive”, yet biopsies revealed a Marsh Stage IIIB with patches of moderate and severe villi damage. In the five years since my diagnosis, my DGP IgA has been elevated several times with a r...
  4. cyclinglady
    Wow! She is doing great. Just what you want to see — declining numbers. I would not worry about the Immunoglobulin A (IgA) result. It is most likely indicative of her having other autoimmune issues. My IgA result is high as well, but I also have other autoimmune issues too besides celiac disease. Keep up the good work! ?
  5. cyclinglady
    Yep, the doctor who told you to disregard the Gliadin IgA result of 78 was completely wrong! You should have been referred to a GI for an endoscopy! Hopefully, you will never see this doctor again. He is probably misdiagnosing many people and I am just not referring to celiac disease! If you have been “gluten free” for 14 years and got the abo...
  6. cyclinglady
    Are you still consuming gluten? (All celiac testing requires you to be a gluten diet some 8 to 12 weeks prior to testing). If so, ask your doctor for the complete celiac panel (TTG, DGP, EMA). The TTG is good, but does not catch all celiacs like me. Then there are some celiacs who are seronegative, so a biopsy can be critical for a diagnosis, especially...
  7. cyclinglady
    Lisa, Congratulations on a healing from celiac disease. I am so sorry that your doctors now may not believe your initial diagnosis! My comments are not directed to you, but to others who might be in the same boat. Document! Maintain and keep all your medical records. I changed medical providers a few years back. When I had my first visit, I presented...
  8. cyclinglady
    Have you had a bone scan? I have osteoporosis as a result of celiac disease. What about other autoimmune issues that may have developed like Sjogren’s Syndrome that could impact your teeth? I had my first molar extraction due to a severe infection last year (failed old root canal). The extraction revealed poor enamel on the teeth next to it which m...
  9. cyclinglady
    You are correct. All celiac centers in the U.S. still recommend a biopsy to diagnosis celiac disease, in addition to the celiac antibodies blood tests. There are a few exceptions. Share these links with your PCP if he/she is refusing to refer you to a Gastroenterologist. Document. If your PCP is not supportive, get a new one. If he can not google how...
  10. cyclinglady
    Back in 2015, one celiac center tested 20 probiotics. Half of them contained gluten! No wonder celiac patients were not getting well. I think most companies have cleaned up their act, but I would stop and start up again once you feel better or find a certified gluten free probiotic. Here is an article. You can also find the study on PUB MED. ...
  11. cyclinglady
    I am so sorry that you are sick. First, maybe you just have a case of food poisoning. It is not always gluten. Second, both those items are processed, so there is the possibility of cross contamination. Sprouts has a tiny meat department and a case to store meat cuts. The chance of cross contamination can be high. I buy most of my meat at Costco. ...
  12. cyclinglady
    Wow! Can you share how you were exposed to mold? Did you get an eye infection from wearing contacts and from there it went systemic? The FDA recalled some contact lens solution a few years back due to this type of mold. I do not think it is related to celiac disease, but mostly those severely compromised immune systems. Do you have an immune deficiency...
  13. cyclinglady
    Why do you need a probiotic? Do you have something other than celiac disease? Have you recently had a course of antibiotics and just want to help repopulate your colon? Make an informed decision about their effectiveness and make sure they are gluten free! https://sciencelife.uchospitals.edu/2014/11/25/do-probiotics-work/
  14. cyclinglady
    Here is a recommendation of a gluten challenge: https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Again, if you can get a appointment sooner, stay on gluten. If the thought of remaining ill for eight months is too great, then go gluten free and start back on gluten for two weeks (looks like they have shortened the time as they used...
  15. cyclinglady
    You need to decide what is best for you. If you go gluten free now, start back on to gluten two to four weeks prior to your endoscopy. Be sure your doctor is kept informed. Some celiacs have a very hard time reintroducing gluten into their diet. Is your schedule flexible? Consider calling the GI’s office to see if there are any cancellations. I...
  16. cyclinglady
    Thanks for sharing! I am sure your posting will help someone else! Mast Cell Activation Syndrome/Disorder is real. We have discussed it many times in the past. Here is one post that might help with coping methods. https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/ I personally think an active celiac or autoimmune...
  17. cyclinglady
    I would just worry about the lipstick. Rimmel should post all ingredients on their packaging. They might not on their website. They will not say it is gluten free because they do not test, but it might not contain gluten. Have you considered a certified gluten free lipstick? Red Apple or Gabriel are both certified gluten-free. I can find...
  18. cyclinglady
    Have you been diagnosed with celiac disease? I can not tell by your post if you are or have been gluten free and if so, for how long? Many things besides celiac disease can cause tooth decay.
  19. cyclinglady
    Hi! I think most of the older comments on Cruise lines still hold true. You can search “cruise” and read various experiences. There are many valuable tips some of which I have contributed. Since my diagnosis, I have traveled Celebrity and RC. I think all lines are probably pretty good, but it is up to you to determine how far you want to tak...
  20. cyclinglady
    Welcome! Just not getting glutened can speed healing. That has been documented, but I have not seen any studies about breastfeeding and it’s effects on healing. I am not a doctor, but I am sure it helps enormously! I breastfeed my daughter until she was 27 months old. Towards the end it was not about nutrition, but comfort. I nursed at n...
  21. cyclinglady
    @Jlewisrn I think one of your posts mentioned your rash now presenting as hives. I have autoimmune hives. My allergist, GI, and PCP think they are related to either my Hashimoto’s or Celiac Disease is it may be a stand-alone autoimmune issue. Mine present or flare horribly (daily, afternoon/evening, thousands all over my body) after a gluten exposure. ...
  22. cyclinglady
    I can not help you with a doctor. Your best bet would be to get to the University of Chicago or the Mayo Clinic in MN. Since you do not want to do a gluten challenge, look to your gluten-free diet. Are you sure you have been strictly gluten free? Do you eat out ever? Do you eat foods in their whole form or do you do you eat processed? Almost...
  23. cyclinglady
    The only way to know for sure is to get her screened for celiac disease. These are the tests and any MD can order them: http://www.cureceliacdisease.org/screening/ Immunoglobulin A (IgA) should also be ordered, especially if an IgA deficiency is suspected. In celiac disease testing, it is primarily used as a control test to validate any IgA type...
  24. cyclinglady
    Thank you for sharing. I like this video by Dr. Fasano which discusses Zonulin. Nice to watch while folding laundry. https://m.youtube.com/watch?v=wha30RSxE6w
  25. cyclinglady
    His symptoms certainly could be due to celiac disease. The problem is that many autoimmune disorder symptoms and other illnesses can often overlap. He already has one — Raynauds. Our daughter has it. Sunny Southern California and she wears wool socks year round. Blue fingers are a bit disconcerting!
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