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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
    Other things can cause villi damage: Open Original Shared Link Were you gluten free at the time of your blood draw for a celiac blood panel? Exactly what tests were given? You might not have had the entire panel. The TTG test is good, but does not catch al celiacs. What does your doctor say? Consider a second opinion. If you wish to...
  2. cyclinglady
    Welcome! A positive is a positive and warrants further investigation. So, it is good that you are having an endoscopy which is still the gold standard in diagnosing celiac disease (sometimes not done for all kinds of reasons like long wait times or lack of funds). I tested positive to only the DGP IGA and was negative on both the TTG IGA and TTG...
  3. cyclinglady
    It could be a glutening or a virus or who knows? Remember, there is a steep learning curve to the gluten-free diet. Remember too, that celiac disease is an autoimmune disorder that is triggered by gluten. A "flare-up" can last for days, weeks or months. Symptoms can wax and wane....and evolve! Just get back on the wagon and learn from your glutening...
  4. cyclinglady
    Yep, negative, but you just had the screening test which is good, but does not catch all celiacs (like me ?). Curious as to what your doctor will tell you. You can request the rest of the celiac panel to be sure.
  5. cyclinglady
    I am not an expert in thyroid disease, but I have Hashimoto's and my Mom has Graves, so I can offer a personal perspective. My thyroid antibodies were off the chart some 20 years ago. My doctor said they were the highest he had seen (over 2,000 or 4,000). Taking thyroid hormone replacement helped my symptoms, but my antibodies did not decrease much. ...
  6. cyclinglady
    I am so sorry about your recent diagnosis. I can not offer any advice, but I can offer hugs! ?
  7. cyclinglady
    Only you can decide if it is worth getting an official diagnosis. I can tell you that I am officially diagnosed (3 years). Just a lucky catch during my GI consult for a routine colonoscopy (Yep, am over 50). Anemia was my only known symptom. No tummy issues. My hubby went gluten-free 15 years ago when my allergist and his GP suggested going gluten...
  8. cyclinglady
    Celiac Disease is an autoimmune disorder (damages the small intestine) that "flares up" when exposed to gluten. Like lupus, celiac disease can cause symptoms within a few hours or even days. It can take days, weeks or months for that flare-up to calm down. So, yes, it possible to not react for days. What tests were done for celiac disease? Was...
  9. cyclinglady
    Here's my two cents about In-In-Out. Just make sure it's a newer store that has a few extra grills. I grew up with this chain. Some of the older stores just have one grille. So, always ask to be extra safe. The order/recipt will specify "gluten allergy".
  10. cyclinglady
    We survived! Three weeks and we did not get glutened! This is our second trip trip to Europe since my diagnosis! I just want to point out some tips for safe travel. Celiac Travel Cards -- download them to your phone or print off in any language for free (just Google). Delta Airlines -- Even though we ordered gluten-free meals for our flight...
  11. cyclinglady
    Katie, I would recommend a celiac antibodies follow-test to see how you are progressing. I have many allergies and food intolerances too. Most have resolved since going gluten free three years ago. Some intolerances (e.g. garlic) have never resolved (am bummed about that!) Celiac Disease is not consistent in terms of symptoms and healing times...
  12. cyclinglady
    I suspected that I got glutened last July (2015) just prior to a vacation to my parent's house. My symptoms though were very different from when I had been diagnosed two years earlier (which was basically only anemia). With this new "glutening" I was vomiting, abdominal pain, rashes, hives, itching, etc. Six weeks later, I visited my GI. He suspected...
  13. cyclinglady
    It will be easy! I just survived a three week trip to Europe and I did not get glutened! We took a seven day cruise. Lovely. Staff well trained about keeping celiacs safe. On land, we ate at only restaurants recommended by Celiacs online. Not a lot of choices, so we ate at grocery stores: fruit, veggies, cheese, meats, yogurts, chips (crisps). We just...
  14. cyclinglady
    Welcome to the forum! An itchy, blistering, burning skin rash, dermatitis herpetiformis (DH) is a difficult condition to live with (better known by our members as the "rash from hell". The rash and itching can occur on the elbows, knees, scalp, back, and buttocks. This rash is triggered by gluten, which is a more serious underlying condition that's...
  15. cyclinglady
    Not all their products are manufactured in the same location or line. You need to read the label first. Heed the advice of their website. Contact them directly. Bottom line? If you are in doubt and are concerned -- don't eat it. That is my motto. Really, is chocolate is a treat and is not necessary for life. What? Did I say that? Me, who adores...
  16. cyclinglady
    It can take time to build up antibodies in your blood. That's why celiac experts recommend 8 to 12 weeks of consuming gluten prior to the blood draw. I am sorry that your doctor did not follow the GI Association's (American, British or Canadian) protocol for celiac disease diagnostics. Open Original Shared Link Open Original Shared Link Open...
  17. cyclinglady
    Get another opinion from another medical doctor?
  18. cyclinglady
    In case Gotta Ski does not see this, I think she found out that she had Mast Cell Activation Disorder or Syndrome. I hope this helps!
  19. cyclinglady
    Here is my story. No intestinal issues when I was diagnosed. Was in for a routine colonoscopy (yep, over 50 years old) when my GI suspeced celiac disease because I was anemic (have two types of anemia actually). He ordered a celiac disease blood panel and added an endoscopy and the rest is history. Healed up and then got glutened last summer. I had severe...
  20. cyclinglady
    It sounds like you might have had the blood test (antibodies) for Celiac Disease. It is a shame that you opted not to do the endoscopy/biopsy for a firm diagnosis. But that is not why I am responding. I am concerned that you have not done enough research about this disease (some Celiacs, like me, never had intestinal symptoms), are not obtaining and understanding...
  21. cyclinglady
    I do not eat my dog's food, but I make sure it is gluten free because it reduces my stress levels and folks have been glutened by it. If you want to be really environmental friendly, then use cloth. The Honest company does not even know if the wheat is processed enough to eliminate gluten per their FAQ page. If they do not know......you know what...
  22. cyclinglady
    Karen is right about the staining. Here is more supporting evidence that states that you must be on a gluten diet before any testing (antibodies or biopsies) for celiac disease diagnosis. Open Original Shared Link Be sure to read the Diagnotics chart figure 2 which states "not on a gluten free diet": Open Original Shared Link You really...
  23. cyclinglady
    It is safe. If derived from wheat, it should be on the label. Open Original Shared Link but....as a newbie, I would recommend avoiding eating out and sticking to whole foods, until your daughter Is feeling better.
  24. cyclinglady
    You know, when helping/directing people to the appropriate tests for screening, I used to refer to NVSMOMs celiac blood panel list. I liked the University of Chicago's celiac website, but they would only list the TTG IGA and IGA deficiency tests for screening. I personally push for the full panel because I continue to test negative on the TTg tests even...
  25. cyclinglady
    What? I am confused. Didn't Kaiser just run the TTG and the IGA deficiency test? This new doctor is not going to run the full celiac panel, but will instead do the endoscopy and a colonoscopy?
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