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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 do not get it. You have had a positive and an equivocal on the panel. Okay, no positive to the TTG IgA despite having a normal Immunoglobulin A result. So what? I have ONLY had a positive DGP IgA (even on many follow-up tests after my dx), yet I had moderate to severe intestinal damage per my biopsies. You can not rule out celiac disease at...
  2. cyclinglady
    It sure does seem like he is getting gluten into his diet. Open Original Shared Link How does he feel? Was he symptomatic when he was first diagnosed? Cross contamination can be a huge problem. Best to avoid eating out until those elevations are reduced. I never had a positive on the TTG tests only the DGP. I struggled last year after...
  3. cyclinglady
    Good to hear that despite the negative TTG, the Doctor ordered an endoscopy. Keep in mind that not every diagnosed celiac has ever tested positive on the TTG. I personally only get a positive on the DGP, even in follow-up testing. I hope you and your mother are able to find answers to both your issues.
  4. cyclinglady
    Sure, you can do that. But give your doctor credit for trying. (I have heard much worse on this forum). Let’s say you do not have celiac disease at this time. Maybe you have Crohn’s. A gluten free diet or AIP diet (which includes being gluten free) can cause IBD (Crohn’s or UC) disorders to go into remission based on a new small study out of La Jolla...
  5. cyclinglady
    Well, I think you can rule out NCGI as the direct cause of an elevated TTG as it does not raise antibodies and causes no intestinal damage like celiac disease. However, symptoms are triggered. So, trying a gluten free diet can be very helpful. It might not solve all your problems, but it can help. The problem is that researchers do not understand exactly...
  6. cyclinglady
    Labs vary. What were the lab ranges? Keep in mind that you only need one positive on the celiac panel.
  7. cyclinglady
    Yes. I just had anemia when I was diagnosed. Now, if I get a gluten exposure, my symptoms are varied (GI issues) and severe.
  8. cyclinglady
    I think you just have to be patient! (So hard to wait, I know!) I think it prudent for your GI to suggest going gluten free. If damaged areas were actually missed, the diet will help to solidly a diagnosis of either celiac disease. If the diet fails, look to other things that might cause a TTG to be elevated. You are correct that an elevated TTG...
  9. cyclinglady
    @Maddiecl — Be patient! Ravenwoodglass is still very active on the forum. I am sure she will reply soon. ? Try not to worry. I know, easier said than done!
  10. cyclinglady
    In N Out is pretty safe. Select a new one that has a back grille. Some of the old stores only have one grille and outdoor seating. Tell them you have a wheat or gluten allergy. Be assertive and tell them you are not a Hollywood Gluten Free moviestar. This is critical for your health. Get a protein style 3 burger allergy burger (lettuce wrapped). ...
  11. cyclinglady
    Welcome! Chronic Functional Abdominal Pain? That is up there with Irritable Bowel Symdrome which is also known as “I Be Stumped.” Ugh! I would suggest getting copies of all her laboratory reports. Which celiac blood tests were given? How many biopsies and from what location? What exactly was on the pathologist’s report? Your child may n...
  12. cyclinglady
    Yes! We eat at Oceans and Earth. They even have customers ers who drive up from San Diego. The owner has a farm. Do not expect lots of Gluten Free bread, but fresh “farm to table” yummy food! All safe! Santa Monica is fun. A street is dedicated for shopping. Take a photo on top of the bluff where the Route 66 marker is located. (We once sta...
  13. cyclinglady
    Well, I have Chronic Autoimmune Gastritis. However, it is not linked to my celiac disease. I just had a recent endoscopy which revealed my CAG, but my intestinal villi were completely healed. This study is pretty old, so while there might be a connection with DH, I think the link may be that you can have many autoimmune disorders at the same...
  14. cyclinglady
    So sorry, sometimes postings just go unnoticed. What did you doctor advise? Was he aware that you had gone gluten free?
  15. cyclinglady
    Welcome! Oh no! Did you tell the GI that you were already gluten free? All celiac testing, be it a blood test to check for antibodies or an endoscopy to obtain intestinal biopsies, requires you to be on a full gluten diet. In as little as two weeks you can heal the gut. This usually is not common, but possible. So, if you receive a negative result...
  16. cyclinglady
    Read the link that Posterboy gave. Jebby (Jessica) is a celiac who is also a preemie MD. She explains the testing well.
  17. cyclinglady
    Go down for the day to Coronado Island and hang out on Hotel del Coronado’s beach which is open to the public. Explore the hotel where the King Of England dined (before he abdicated the throne for the American Mrs. Simpson). The movie “Some Like it Hot” starring Marilyn Monroe, Troy Curtis (Jamie Lee Curtis’ Dad) and Jack Lemon was filmed at the hotel. ...
  18. cyclinglady
    Looks more like bug bites that have been scratched causing some surrounding redness and irritation, but I am not a doctor. It does not seem like hives either. The rosacea? I have it. Mine is definitely triggered, not by gluten, but other food intolerances like onions or garlic which have never resolved despite healing fromceliac disease.
  19. cyclinglady
    It is possible. Some neurological issues are due to malnutrition as a result of untreated celiac disease or an active flare. It could be also attributed to many other illnesses like diabetes or another undiagnosed autoimmune issue. Accidental hidden gluten exposures tend to set off my other autoimmune issues or make them worse. How long have you...
  20. cyclinglady
    That link is pretty spot on. The University of Chicago is a leading celiac research center. We are discussing testing for celiac disease (used as a control test) and not issues with a low Immunoglobulin A and the health issues that arise from that. Some celiacs are seronegative period (rare). If you think your IgA results are incorrect, then ask...
  21. cyclinglady
    Am sorry that he is so ill. There is a steep learning curve for the gluten free diet. It takes time to learn it well. As a result, healing time can take much longer than you would think. Consider reading our Newbie 101 thread located at the top of the “Coping” section of the forum. Stick to unprocessed foods, even gluten free bread, until you see res...
  22. cyclinglady
    I would never even let my own mother cook for me! Why? She does not deal with the gluten-free diet on a daily basis, not to mention my other food intolerances that have not diminished despite healing. I do visit my folks and I supervise all the cooking. Mom is great though about getting gluten-free goodies for us, stocking up on fruits and veggies...
  23. cyclinglady
    Welcome! Yes, you can be in your 50’s and be diagnosed with celiac disease. It can develop at ANY age. Celiac symptoms can wax and wane. It is one reason many are not diagnosed quickly. Best to get a celiac antibody blood panel. Open Original Shared Link Keep in mind that all celiac testing requires you to be on a full (daily) ...
  24. cyclinglady
    Why wait for the biopsy results? Ask your GI for the celiac antibodies tests today. The maltodextrin? It is considered gluten free because it is so refined and if derived from wheat, it must be declared on the label. Open Original Shared Link I would look to other possible sources for a gluten exposure. Do you eat out? Eat oats? How...
  25. cyclinglady
    What exactly do you eat? Do you ever eat out? Do you eat oats? Have you tried the Fasano diet? Learn here: Open Original Shared Link You joined in January. Did you get an endoscopy? Assuming you had one, other AI issues, like Ulcerative Colitis been ruled out? If you never got that endoscopy and you are dietary compliant, consider...
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