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cyclinglady last won the day on October 16

cyclinglady had the most liked content!

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About cyclinglady

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    DGP IgA positive only, Marsh Stage IIIB
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  1. When I was diagnosed five years ago, my GI told me that everything looked good on my scope. My biopsies revealed a Marsh Stage IIIB. Turns out his scope was not able to visually see the villi. My new GI has the latest and greatest scope. We could actually see the healthy villi during a repeat endoscopy. My biopsies confirmed no signs of celiac disease. Great news indeed! I think you have to wait for the biopsies.
  2. cyclinglady

    Calorie intake needs help

    Try cooking meals in batches on your days off. Keep in the frig or freeze small portions. Planning meals makes it so much easier on a tight schedule. I know this seems like lame advice, but it is true. I found this You Tuber (no personal connection, just selected one with many views). Of course, modify for gluten free and your other food intolerances. You can pack some great lunches too. Happy meal prepping or You Tube surfing!
  3. Maureen, DH is celiac disease. It manifests on the skin. The antibodies that cause celiac disease/DH are actually in the skin and can take a very long time to resolve (on a gluten-free diet). I do not have DH, but if you read the postings in the DH section, you will find that DH suffers must be very strict in order to prevent flare-ups which often flare without any obvious reason. Stricter than most celiacs. Milk Duds are processed. Were they cross contaminated? Who knows? Just susbscribe to the FDA and USDA alert sites and you will get daily reports of all kinds of foods that either are tainted with a bacteria or with a potential allergen like wheat or peanuts which does not appear on the product label. Mistakes, though rare (or at least reported) do occur. You honestly could have reacted to any of the ingredients found in Milk Duds or maybe even picked up a case of food poisoning. Those things are hard to digest especially if you are a newbie and your GI tract is still not healed. When my celiac disease is active, I can not even digest gluten free safe foods for a few weeks without abdominal pain. How long have you been gluten free? As far as milk is concerned, I consume copious amounts of it daily and I am a healed celiac based on repeat biopsies. I am fortunate that I am not genetically lactose intolerant and was able to add milk back into my diet after healing. But some people (like a huge chunk of the world’s population) are naturally lactose intolerant (not to mention when you age, you can become lactose intolerant too). If you are new to celiac disease, please consider avoiding processed foods for a while and do not eat out until you are feeling better and that rash is gone! I hope you feel better soon.
  4. Hi! I am sorry that your son is ill. An elevated (slightly) TTG IgA can be attributed to other illnesses. Have those been ruled out? http://www.cureceliacdisease.org/faq/how-does-one-rule-out-other-possible-causes-of-the-positive-ttg-blood-test/ I have not researched genes, but some of our members have an unusual variant. Consider asking your doctor to run a complete celiac panel (EMA and DGP). How old is your son?
  5. In theory, the small intestine can heal in just a few weeks. But the reality is that most celiacs take months or a year or so to heal. Why? Celiac disease is an autoimmune disorder like lupus or MS. It is different in that the trigger is known — gluten. No one knows what triggers other autoimmune issues. But once triggered, the body builds up antibodies. Eventually the body decides to calm down, but that could takes weeks or months. Another reason is the gluten free diet. The learning curve to it is really steep. Mistakes are so common! Please read the Newbie 101 thread located under the “Coping” section for some valuable tips. Finally, it is going to take time to heal. If you avoid eating out and stick to a unprocessed foods diet, your healing might be expediated. I wish you well.
  6. cyclinglady

    not enough sleep

    You are still within the acceptable range for hemoglobin. Why would you supplement with iron? Did you know that there are many types of anemia? Not all people with anemia are low in iron. Taking iron as a supplement could be dangerous (iron overload) if you do not need it. Ask your doctor to run blood tests if you think you are low in ferritin or are not processing iron properly. Honestly, you admitted to consuming gluten after being diagnosed. You have not healed. But it seems like you are taking celiac disease seriously now. Just stick to the gluten-free diet and be patient. I know that is so hard to do! You are lucky you can be a little lazy. It will allow you to heal too. Hang in there!
  7. It is not always malabsorption with celiac disease. Celiacs seem to have leaky gut issues due to excess Zonulin. Researchers think it might be the key to many other illnesses (e.g. autoimmune) where inflammation is involved. Celiac disease is definitely systemic. The impact to the neurological system is still being studied. Learn more: https://m.youtube.com/watch?v=wha30RSxE6w
  8. cyclinglady

    not enough sleep

    Hi! Your earlier reports indicated that your celiac disease is still active. I think your sleep issues can resolve, but you will need to remain gluten free to allow for healing. Celiac disease is systemic and can wreak havoc on so many body systems outside of the GI track. Be patient! 😊
  9. cyclinglady

    DH in 11 year old boy?

    He can also get the celiac blood tests as well. If you go with a skin biopsy, make sure the dermatologist knows how to properly biospy the rash specifically for DH. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ All first-degree relatives should be tested even if they are asymptomatic. DH is celiac disease! It just presents on the skin. It can develop at any time in your life!
  10. What can I say? The above posters are correct. Getting a new doctor is probably the best advice. Your doctor sounds like she is too lazy to research an illness to better treat her patient. All of your symptoms could be attributed to celiac disease which is systemic!
  11. You are in a tough position. The TTG has been known to be elevated for several other illnesses. http://www.cureceliacdisease.org/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet/ It sounds like she is doing well on a gluten free diet since your home is gluten free, you rarely eat out, and she is pretty much symptom free. I can relate to your frustration with the blood tests. I have learned that by activating my celiac disease (with gluten), I seem trigger (or develop) other autoimmune issues. Last year, I was sick. It started with a tooth infection (failed old root canal), a couple of rounds of antibiotics (which I hope were gluten free, but not sure), the flu, and a cold. At some point I was glutened. I started developing all-over-my-body hives daily every afternoon besides my inability to digest even safe foods (e.g. became lactose intolerant again). My DGP IgA antibodies were off the charts (never had a positive on the TTG or EMA tests and I am biopsy confirmed). After six months my DGP IgA antibodies were still off the charts (as were my thyroid antibodies). My GI wanted to scope me again, but I asked to go on the Fasano diet. Three months later, I was still having GI issues and my DG IgA was still elevated. I finally agreed to have the scope. It revealed a healed small intestine but a damaged stomach. I was diagnosed with autoimmune gastritis. So, I was doing a good job all along on the gluten free diet. At least the endoscopy validated that I was diet compliant. I have no idea what triggered my initial glutening as I rarely eat out (and only at dedicated gluten-free) and my house is gluten-free (hubby was gluten-free 12 years before my diagnosis, so I know the diet pretty well.) I share my story because she might very well be healed from celiac disease. The blood tests for celiac disease are good and not perfect, but they are the “only tool in the toolbox” and are much less invasive. If she is game, consider the endoscopy, it might just give you all piece of mind. It did for me.
  12. Welcome! Celiac disease has so many symptoms (over 200) and the ones you described could very well fit celiac disease. Did you get a celiac blood screening test prior to your biopsy? If your GI (or Dermatologist if you have Dermatitis Herpetaformis) went directly to biopsies, ask for the screening now before going gluten free as many things can destroy intestinal villi. Anxiety and liver issues are very common in celiac disease and can resolve on the gluten free diet. But a fatty liver can be attributed to a diet high in carbs/sugar. http://sugarscience.ucsf.edu/the-toxic-truth/#.W8CyhRplChA Keep us posted of your results. If celiac disease is ruled out, you many have Non-Celiac Gluten Sensitivity. Trialing the gluten-free diet can resolve this too. I hope you feel better soon.
  13. Thanks! I did post the wrong link! https://www.beyondceliac.org/research-news/View-Research-News/1394/postid--94720/ https://www.glutenfreewatchdog.org/news/gluten-detective-consumer-test-kits-for-detecting-gluten-in-stool-and-urine/
  14. So glad that you are already feeling better!
  15. cyclinglady

    Shared desks and croissants

    Ennis, I like that idea about the plastic keyboard covers. Excellent!