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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
    Sometimes the damage can be seen during the endoscopy, but often times it can not. The damage is microscopic. My biopsy revealed a Marsh Stage IIIB (moderate to severe patches) and yet my GI said that visually I looked fine. Go figure!
  2. cyclinglady
    Hard to say. You have a positive TTG and you are not IgA deficient. The TTG is pretty high, so I would say autoimmune thyroid is not tweaking your result, but I am NOT a doctor. You only need one positive on the panel to move forward with the endoscopy. Personally, I have Hashimoto’s Thyroiditis, only a positive on the DGP IgA (negative EMA and TTG t...
  3. cyclinglady
    Excellent suggestion! ?
  4. cyclinglady
    Welcome to the forum. When were the last time your celiac antibodies were tested? It might help to rule out active celiac disease as the culprit for your lichen Planus. It can help determine if you are being exposed to hidden sources of gluten. http://www.cureceliacdisease.org/screening/ Sorry, I do not have a solution to your Lichen...
  5. cyclinglady
    I am sorry that you are unwell! I am concerned that your doctor is not following normal guidelines for diagnosing celiac disease. A gluten challenge is usually 8 to 12 weeks prior to the blood test (2 to 4 prior to endoscopy) as recommended by leading research centers: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ The...
  6. cyclinglady
    She should rule out active celiac disease (gluten in her diet) with a follow-up antibodies test. This should be done a few months after the initial diagnosis and then yearly with her GI. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ If her antibodies tests have returned to the normal range, her doctor can look...
  7. cyclinglady
    Yes. Learn more: https://www.verywell.com/anemia-and-celiac-disease-563116 and....celiac disease can be considered as a chronic illness. Seems like your hematologist can not get past your past anorexia diagnosis (and I am not discounting the impact anorexia may have had on your anemia or any other damage incurred). It could be a combination...
  8. cyclinglady
    Welcome to the forum! It is possible to have both a lactose intolerance and issues with Casein and Whey (milk proteins). Symptoms can vary with both. To help you figure it out, it would be best to have some follow-up celiac antibodies testing. At least rule out celiac disease as the culprit. If your celiac disease is actively flaring, this...
  9. cyclinglady
    Consider checking out one if these newer UK NHS celiac center support post diagnosis groups/clinics. There may be one near you. I did not listen to the entire lecture, but there were other lectures and you might find them useful.
  10. cyclinglady
    Welcome! I sounds like you may not have had the complete celiac blood test panel which includes the TTG, EMA, and the newer DGP (both IGA and IGG versions in case you have an IGA deficiency). Learn more about testing: http://www.cureceliacdisease.org/screening/ If all else fails, you can trial the gluten free diet for six months. That...
  11. cyclinglady
    Yes, a blood glucose meter. Consider reading the Newbie 101 thread located at the top of the “Coping” section for valuable tips. Everything that you ingest must be gluten free.
  12. cyclinglady
    Well, the gluten free diet will not hurt anyone really. The problem is that people who go gluten free often trade one bad food for another — like cookies for gluten free cookies. Neither is really healthy for you. If you eat a varied diet of meats, fish, poultry, veggies, fruit, nuts, good fats and gluten free grains, you will be fine.
  13. cyclinglady
    While a diagnosis is nice to have, it is possible to remain gluten free and LCHF. My hubby has been for over 16 years (long before my diagnosis). There is no way he would consider a challenge (we like to pay our bills!) Just because you have the genes to develop something, does not mean it can happen to you. About 35% or so of the population carries...
  14. cyclinglady
    I buy EOS which marked Gluten Free. I can get it in bulk at Costco in yummy flavors. If you are in doubt or in a pinch, try Plain old Vaseline or Coconut Oil.
  15. cyclinglady
    I think it depends on how dirty the oven might be. My house is gluten free. Personally, I would never bake in a shared oven (thinking family lake house) but do in my mother’s oven which is super clean and she usually runs it though a cleaning cycle before we arrive. Perhaps others can address that issue.
  16. cyclinglady
    Your result is unusual, but your GP was correct in referring you to a GI. Like you, I tested positive on only the DGP. In my case, it was the IgA version. All others in the panel have always been negative even in follow-up testing. The TTG is very good and catches MOST celiacs. It is typically used as a screening test in order to save costs and...
  17. cyclinglady
    I am sorry that you had an allergic reaction. It is so frightening! Are you sure it was wheat? If yes, you must be extra careful about everything that surrounds you. Celiacs need only worry about gluten that is ingested. An allergy to wheat? Just touching your skin can cause a reaction. You can be both celiac and have a wheat allergy! Though...
  18. cyclinglady
    What does the label say? My Heinz (non-organic) says gluten free right on the label. Maybe your organic version does not. Gluten free trumps organic for a celiac. I just wanted to add, that the ingredients on the organic label may all be gluten free, but for some reason the manufacturer does not add the gluten-free label. Maybe they test the non...
  19. cyclinglady
    What autoimmune diseases do you have besides Hashimoto’s? Your previous posting showed that on a complete celiac panel and endoscopy, that you were negative. I assume you are diagnosed with Non-Celiac Gluten Sensitivity. Has the gluten free diet helped your symptoms (previously gastritis, etc.)? We also talked about lowering your TPO antibodies which w...
  20. cyclinglady
    Cristiana, What you should be shocked about is that you have not received follow-up care for your celiac disease. You should be tested annually as recommended by both American and British GI Associations and all the world celiac centers. Like this one: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ I know nothing...
  21. cyclinglady
    As the test says, your TTG results indicate that you could have celiac disease and that the next step would be to get an endoscopy to obtain intestinal biopsies. But it sounds you did not do that or that your biopsy was negative. You have been gluten free for years. Do you suspect that gluten is not an issue for you? What made you look at the old...
  22. cyclinglady
    Wow! I am sorry that you are so sick! I realize gluten may be an issue for you, but perhaps you might have issues with Lyme Disease? I read that ticks can cause a meat issue. Research Mast Cell Activation Disorder too since you struggled with swelling and hives. Let’s hope someone else has some suggestions. I wish you well!
  23. cyclinglady
    Only a two week challenge when all celiac experts (including GI Associations) recommend 8 to 12 weeks? You were lucky to get a positive. Your IgA in the case of celiac testing is not too low. It is used as a control test. The next step is getting a GI referral for an endoscopy, which I think (I am not a doctor), you will need since your blood test results...
  24. cyclinglady
    Sadly, yes! My symptoms ramp up slowly. They are at their worse, it seems a few weeks after the gluten exposure and last for another month or two. Overall, it can last three to six months for me! Ugh! I try to eat easy-to-digest foods because eating anything causes abdominal pain. I also become lactose intolerant and that takes months to resolve...
  25. cyclinglady
    You have a positive! You only need one on the panel to be positive. For example, in my case, I was only positive on the DGP IgA and yet I had intestinal damage. The only issue I see is that the Gliadin test is older and was replaced by the DGP. Normally, the EMA might have been included in a full panel. Still, the next step for you is a referral to a...
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