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cyclinglady

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cyclinglady

  1. I do not have DH....but from what other members have said, Dapsone works. There are some very serious side effects. Most members try to rely on the gluten-free diet long term. It is your best defense! However, they must be very strict. Most do not eat out and they avoid even processed gluten-free foods. They tend to experiment once the DH resolves....
  2. Wow! That was a long report. Since my celiac disease diagnosis and becoming a member of celiac.com, I have realized that we are all unique. How we react to gluten varies in terms of symptoms and the amount of gluten we can safely consume before setting off an autoimmune reaction. The 20 ppm cut off set by celiac researchers was a start. Perhaps...
  3. Maybe. Researchers think stress might trigger celiac disease (one of several theories). Giving up cigarettes is stressful. But long term, you are better off not smoking. I have several family members with COPD. It is a horrible way to live — struggling to breathe.
  4. Hi Katie! Celiacs must be very careful with their gluten free diet. Many celiacs also have additional food intolerances or allergies that may or may not improve once healed. I recommend eating non-processed gluten-free foods and do not eat at restaurants for six months. Avoid cross continuation in your home or if you risk eating out (I prefer only...
  5. I agree that you are probably getting gluten into your diet (if gluten is your issue) as most people who are new to the gluten-free diet make mistakes. There is a steep learning curve. Hang in there!
  6. “Understanding Less Than 20 Parts Per Million (PPM) It is a common misconception that foods labeled "gluten-free" can or do contain zero parts per million (ppm) of gluten. At this time, no validated tests are able to accurately detect gluten at zero. Less than 20 ppm is an amount that has been deemed safe by celiac disease experts for MOST people living w...
  7. Welcome Back. As you probably know, DH can not visually diagnosed. The rash can be so many different things. The last time you posted, Squirmingitch and Ravenwoodglass gave you some excellent advice. I recall that your skin biopsy was negative but that you had been on steroids. Were you able to trial the diet for six months?
  8. I am so sorry. I know you were hoping for a negative result. It sounds like your GI had an older version of the scope and could not visually see the damage. That is what happened to me. There is good news. On the gluten free diet, you will feel better. Little things that you just ignored or put up with will go away. You will have more energy...
  9. Based on my personal experience, start off with walking and the work your way up to jogging. Consider swimming or water aerobics if you have access to a pool. Moderate Exercise helps with inflammation. https://health.ucsd.edu/news/releases/Pages/2017-01-12-exercise-can-act-as-anti-inflammatory.aspx
  10. I think that there has been some mis-communication. Every drug has risks and benefits. I took strong does of antihistamines (both H1 and H2) as prescribed by my allergist (MD) because of chronic hives, not because I was suffering from gastric symptoms. Could the use of them activated my third autoimmune disorder (Chronic Autoimmune Gastritis)? Who...
  11. Welcome. Your diet may not be so strict. Is the restaurant you are eating at 100% gluten free? If not, you have the risk of cross contamination at restaurants. If you are getting gluten exposures, your celiac disease activates. Digesting anything then, is going to hurt until your body stops attacking your small intestine. That could be days, weeks...
  12. My allergist prescribed H2 antihistamines for the hives. Before my hives erupted every afternoon, I had abdominal pain. It felt like I was getting hives in my gut first! So we thought it was allergy or autoimmune related. Maybe even Mast Cell Activation Syndrome (have a standing order to be tested at ER). But the GERD-like symptoms lingered after the...
  13. I was in H2 antihistamines for six months when I developed autoimmune hives after a gluten exposure. (Hives started every afternoon with intestinal pain and the hives start racing up and down my body.). A few months later, I developed GERD like symptoms. I kept trying to figure out how gluten was getting into my diet. Turns out it was not. A repeat biopsy...
  14. Not true. A gluten-free diet is not bad for anyone. But it can be bad because lots of people consume gluten-free junk food. Junk food is junk food. You do have to be careful about consuming too much rice (arsenic issues) and eat a well-balanced diet since gluten-free flours are not fortified. My kid has Raynaud's. Her first autoimmune. It is...
  15. Wow! There are not many of us who just test positive to only DGP. I am so glad that my doctor did run the full panel. Thanks for sharing.
  16. Genes? About 35% of the population carries the celiac genes, but only about 1% go on to develop celiac disease. Gene testing typically is used to help rule out celiac disease. Odds are you have those genes of you have a sibling with celiac disease. Why bother getting tested? Who knows, but later if you try to get life insurance, you might be denied...
  17. Did you actually get a complete celiac panel? https://www.verywellhealth.com/celiac-disease-blood-tests-562694 Doing allergy testing (IgG) is well sort of helpful, but not very accurate per all the leading allergy groups. You can google that. Since 2012, have you ever thought about going gluten free for six months? Unless you really need...
  18. Good question! Does your doctor think you are a seronegative celiac? Does he suspect something else like Crohn’s Disease? Maybe you should talk to the GI office and not your primary care physician. Let them know that you have been gluten-free. Your GI May not know this.
  19. I took a different approach. I asked my doctor to test me for deficiencies. I had none except for low ferritin (I had iron-deficiency anemia). I took an iron supplement and within three months my ferritin improved and was just in the normal range. Then, I dropped the iron supplement and focused on iron-rich foods. By my next blood draw, I was well into...
  20. Yeah! Consider ditching your doctor. He is obviously not following the American GI Association’s (or British, EU, etc.) recommendations for celiac testing. Why is that? Is he smarter than all the celiac disease experts? Damage can take a long time to heal because most people make mistakes on the gluten-free diet. It also depends on individual p...
  21. I am not a doctor, but I can share my personal experience. The only thing that I was low on was ferritin which led my GI to test me for celiac disease. I was never deficient in anything else yet I had Marsh Stage IIIB damage. I went in for a routine colonoscopy (and added an endoscopy) because I had hit 50 years old (and all my friends were getting them...
  22. I am so sorry that you are struggling. Have you tried a meal replacement like Ensure? After a gluten exposure, I consume homemade soups, broths, and stews that are cooked for so long, that digesting them is kinder to the gut because anything hurts to digest. Avoid raw foods, even food, unless it is cooked. I have read that gastric bypass can trigger...
  23. Hey Erin! Welcome! I can provide a couple of things, but I am not a medical doctor — just a mom who has autoimmune issues al9ng with other family members. What was the lab range for the IgA test? For the TTG to fail, the result must be pretty much zero and not just below range. Did you get the rest of the celiac tests (DGP IgA, DGP IgG and E...
  24. I have osteoporosis and was diagnosed with celiac disease after the age of 50. I had no GI symptoms, just anemia. Within months of my celiac disease diagnosis, I fractured my back doing NOTHING! That was how my osteoporosis diagnosis was caught. I can tell you that I am normal size. Not all celiacs are wasting away. Some are overweight, tall .....whatever...
  25. @mama.liz07— I went grain free after I got my diabetes diagnosis (one year after my celiac disease diagnosis) to reduce carbs and I finally felt better. What I realized that although my hubby could tolerate many processed gluten-free foods, I could not. For example, I have issues with Xanthan Gum. While I am no longer lactose intolerant, I can n...
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