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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
    Have other autoimmune disorders been ruled out? When was the last time your antibodies were tested for active celiac disease? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  2. cyclinglady
    The risk for cancer due to untreated celiac disease is really, really low, especially in a young person. So, no need to worry. There are long term complications for not complying with the gluten free diet as you have probably googled. For example, most likely some bone damage as this is the time in your life you should be building as much bone as possible...
  3. cyclinglady
    Ennis is correct. Doing a gluten challenge to get celiac testing could be dangerous. However, your allergies might not be severe as your allergist did not issue you an EPI pen (most allergy testing is not very accurate. You should discuss a possible challenge with your allergist and a GI. https://www.mayoclinic.org/tests-procedures/allergy-tests...
  4. cyclinglady
    Great news! I have have joined the “Peter club”! My villi are healed! The gluten free diet is working! I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage). My main symptom was anemia which I recovered from in just a few months with iron supplements. Minor symptoms persisted the fir...
  5. cyclinglady
    Dang.....another hasty reply by me! I guess I was thinking about myself. I need to post an update on my progress which could help a few people. Great catch and thank you. ? So, Karen’s advice to go on the Fasano diet temporarily might be the best solution for active celiac disease.
  6. cyclinglady
    So interesting! Kraft (Unilever too) has a long-standing policy of disclosing gluten ingredients. But they only clearly label a product “gluten free” when they have tested it to less than 20 ppm. http://www.kraftrecipes.com/recipes/healthy-living/gluten-aware-recipes/label-reading-for-gluten-information.aspx So, ingredients change all the tim...
  7. cyclinglady
    Celiac experts are not supportive of Enterolab for celiac testing. Consider getting standard celiac testing. Learn more at http://www.cureceliacdisease.org/screening/ Pancreatic is sufficiently is commonly linked to celiac disease. If you are diagnosed with celiac disease, doctors are more likely to keep an eye out for cancer down the road....
  8. cyclinglady
    Gaterade is actually on the Fasano gluten free diet used for those patients with suspected non-responsive celiac disease. So, celiac experts think it is safe!
  9. cyclinglady
    Have other anemias been ruled out (you can have more than one type)? Small red blood cells can also be attributed to Thalassemia. I say that because my iron-deficiency anemia was often overlooked because I have Thalassemia (that and menstruation). Also, Karen’s suggestion of the Fasano diet is a good one. You might be exposed to a hidden gluten o...
  10. cyclinglady
    Did you google? A quick search shows that there are some issued by celiac disease non-profits.
  11. cyclinglady
    Great! I was not sure just how many people know about the search function.
  12. cyclinglady
    Celiac.com has a fabulous resource....the search bar (tiny little magnifying glass). Type in “honey” and you can look at previous posts concerning this topic!
  13. cyclinglady
    Does he need vitamins? Has his doctor run a vitamin and mineral panel? Mine did. I take no vitamins. None. Except for the first few months, I took an iron supplement after my Celiac Disease diagnosis. My anemia resolved within months. It was either that or some blood transfusions which I declined. I do make sure to eat a healthy diet as does my...
  14. cyclinglady
    If you really are trying to pursue a diagnosis. I would try to get those old records. Intestinal damage can be spotty. This is one reason celiac experts recommend a minimum of four biopsies (more is better). Not all GI’s have the newer scopes that can actually see villi. Then look at your blood tests and determine exactly which celiac tests were t...
  15. cyclinglady
    At 59, you might as well just stick to the gluten free diet, but be strict! Some celiacs are seronegative, but it sounds like you were gluten light when you had the blood test and endoscopy. Do you know if more than four biopsies were taken? It can be easy to miss patchy damaged areas. In a few months, see if your anemia has resolved. My ferritin levels...
  16. cyclinglady
    Scripps in San Diego just published a small study about the AIP diet. It was tested on IBD sufferers (Crohn’s and UC). Patients stayed on their meds and the diet was implemented. Amazingly, a large percentage — 73% — went into remission! Okay, it was a small study, but those are pretty good results. http://journals.lww.com/ibdjournal/Pages/Artic...
  17. cyclinglady
    Sorry, but I would never eat there as a celiac. The risk for cross contamination is great. I would BELIEVE the manager. They probably glutened a few customers despite their best efforts. Eating out is a risk, but it can be done. Consider a nicer restaurant where the manager and chef are willing to work with you or find an celiac-friendly restaurant...
  18. cyclinglady
    It depends on where you live. It is Celiac in the U.S. Coeliac in the U.K.
  19. cyclinglady
    What did the hospital’s diagnosis? Did they assume it was just a celiac flare up? Did they test your antibodies? Any new processed foods ingredients that you might have reacted to? If it does not resolve soon, make an appointment with your GI. I do not recall other members reporting retaining water like that, but with celiac disease nothing surprises m...
  20. cyclinglady
    I am so sorry that you are ill! Unfortunately, I do not have any solutions for you other than to stay hydrated and rest. Let’s hope other members can offer good advice.
  21. cyclinglady
    Okay. Keep keep in mind that you will have to go back on gluten for the endoscopy 2 to 4 weeks prior. Consider investigating the possibility of a cancellation. Healing? It can take a few weeks, months or years depending on collateral damage while learning the gluten free diet. Because you have diarrhea, I would recommend ditching dairy and sticking...
  22. cyclinglady
    Julie, Can you provide the lab ranges?
  23. cyclinglady
    Welcome! I am not a doctor, but it appears that your TTG is “off the charts”. Most likely celiac disease. Keep eating gluten and get a referral to a GI. The next step in confirming a diagnosis is to obtain intestinal biopsies via endoscopy. The IgA test, in the case of celiac testing is just a control test. Confirms that the TTG IgA test worked. N...
  24. cyclinglady
    Welcome! I am so sorry that you were woefully misinformed as to when to start eating a gluten free diet prior to obtaining biopsies (did they take more than four and from recommended areas? Get copies of all your results in writing). I sure hope you were not advised by your GI to do so (if so, ditch this doctor). Antibodies and intestinal healing...
  25. cyclinglady
    I would not think that exercise could raise your enzyme levels, but autoimmune can. I am like you. Seriously, are we sisters? I run, swim and cycle. I am heading out to teach water aerobics. I have been active my whole life. I can tell you that as I have aged, I have slowed down (injury prevention and I want to keep my knees!). Extreme exercise can...
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