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cyclinglady

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cyclinglady last won the day on January 17

cyclinglady had the most liked content!

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About cyclinglady

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  • Gender
    Female
  • Interests
    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

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  1. Wow! So happy for you. I am going to pass this on to my SIL who suffers from canker sores. Thanks!
  2. While the risk of developing lymphoma is RARE, it is a possibility and it has been documented. We just lost a forum member to Lymphoma. Really. She was real. I took the time to find her obituary. I was so sad. We all became so attached. Why did she get cancer? Well lots of reasons, but she was a little shop owner who sold guitars and taught lessons. She did not make enough to pay for health insurance and rarely went to the doctor. Read her story for yourself: It is not my intent to scare anyone. The cancer risk returns to normal if you have celiac disease and you are gluten free. But anyone struggling with a celiac disease diagnosis should read the FACTS about this disease from research-supported sources and not take the advice from non-medical personnel, like your Dad, as fact. We are on this forum to offer advice. More often is is just to deal with the day-to-day issues of being gluten free. But medical issues/advice should be researched. Unless you are EXTREMELY intelligent and have common sense, most of your medical information should come from a person who has a medical degree. As much as I love reading Dr. Google, I still work with my doctors who might make mistakes, but are still better equipped to deal with medical issues than me. You can avoid gluten. Your doctor is mis-informed. Chances are he is dealing with patients (my own GP has admitted that she has two celiac patients who do not adhere to the gluten-free diet) who are not trying hard enough. It is all about choice. I am sorry that you are in diagnostic limbo land. I am sorry that your case in not clear cut. But you have two choices: 1) continue to eat gluten until your blood tests validate your diagnosis or assist in going forward with an endoscopy or 2) go gluten free now. No one can decide that for you. Only you. Good luck.
  3. I agree with your doctor that your specialist is an idiot. You have celiac disease. It just presents primarily in your skin. Remain gluten free! There is plenty of documentation to support what Karen posted. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ https://www.niddk.nih.gov/health-information/digestive-diseases/dermatitis-herpetiformis/health-care-professionals But...my niece was recently diagnosed with Crohn's (I was sure she had celiac disease) via a pill camera. It was found at the very end of the small intestine away from the reach of the scopes. Just some thing to think about. I hope you feel better soon!
  4. Congrats on the bike ride! Heard about the nice weather. My folks live in Northern Georgia. But it's raining now...... Yogurt and cheese have the least amount of lactose. You might try lactose free milk too. I found that handy a while. Keep a journal and take one day at a time. Happy healing!
  5. Welcome! Are you on a gluten free diet? If so, you will have to go back in gluten for 2 to 4 weeks prior to an endoscopy to obtain at least six tissue samples (biopsy). Ask to be sedated during the procedure. Bring all copies of previous lab work (even really old ones) and be prepared to provide a history. I have written a brief history and presented a graphic family tree containing all family medical information. My GIs and new PCP have been thankful, not to mention the rest of my family who has benefited from the family tree. Write down a list of complaints, take notes and if possible bring a friend with you (parent, spouse, sibling, friend). Sometimes you are taken more seriously and when you are not feeling well, you might miss something. The GI may even skip the endoscopy and give you a diagnosis. Best to research as much as possible so that together, you can make the right choice. Good luck!
  6. Dr. A. Fasano (leading celiac researcher/GI afflicted with Harvard University/Mass General Hospital -- bio: https://en.m.wikipedia.org/wiki/Alessio_Fasano and his team discovered Zonulin a decade ago or so. They think that zonulin are the little gatekeepers of the gut. You can read about it here: https://www.ncbi.nlm.nih.gov/pubmed/21248165 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3384703/ or watch a video: But......Dr. Fasano (in a nutshell) stated that we do not really know how the gut works. There is some exciting reasearch, theories, and lots of possibilities -- that's it. There are no tests or cures for a leaky gut (he really does not like that terminology, but it fits). Most of the information on leaky gut you can find on the web has never been proven. Many sites are preying upon sick people. Let's face it, they want your MONEY! Here is my opinion and I am not a doctor: Leaky gut may be real. It certainly might explain why so many of us have common or unique intolerances to various foods. It might explain many autoimmune disorders. It might link gluten to other illnesses. Leaky gut might be the root cause of intolerances, allergies, immune responses, but there is no solution (other than avoidances those foods that make trigger symptoms, like gluten) at this time. So, keep searching for medical news from reliable sources. There is no magic pill or cure, but maybe someday!
  7. Hubby and I both eat Chobani all the time. No issues gluten issues at all. But we are pretty much healed. Skip the dairy for a week. If systems improve, then you know if lactose is an issue for you. Often this resolves with healing. But if you felt well for two weeks, you might be getting gluten into your diet somehow. Read all labels. When in doubt (at least until you master reading labels), do not eat it.
  8. If you were diagnosed with celiac disease, when was the last time your GI ran a celiac antibodies test? That might help you determine if you are actually gluten-free dietary compliant and not dealing with hidden gluten or cross contamination. If you are NC Gluten Intolerant....a bit harder to determine. In that case keep a food journal. Have you considered something other than celiac disease? It could be something like Crohn's. You can develop other autoimmune disorders or even a new disease (let's hope not!). Welcome to the forum. 😊
  9. Just want to add that Costa Coffee has a good gluten-free chicken wrap and gluten-free brownies (chocolate cake). Nice to grab a snack near a subway station or on the highway. We actually stayed in a few Bed and Breakfast Inns that catered to celiacs! Our farm stay was fabulous. Our daughter loved it.
  10. I use Pamela's because it uses guar gum instead of Xanthan Gum. For some WEIRD reason my body doesn't like Xanthan gum even after all these years!!! 😩
  11. Tiny red blood cells may be related to Thalassemia (a genetic anemia which can produce minor symptoms in many cases). I have Thals and had iron-deficiency anemia. Was never an issue until I could not keep up with my iron stores (due to celiac disease and menopause) and my normal hemoglobin levels (which are always slightly below range) dropped very low. But bodies often adapt. I just wasn't going to get an Olympic medal! BTW, Iron will not help with Thalassemia. Your doctor should run a vitamin panel on you. Standard follow-up care for celiacs (includes Celiac antibody testing to help see if you are dietary complaint too). I am not suggesting you have Thals. Just something to consider. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  12. You can maintain a shared kitchen, it just takes planning and some rules. My kitchen was shared for 12 years until I was diagnosed and I previously controlled the kitchen. There is just the three of us, so two against one won. It is nice to have a safe place to relax. You will figure out what works best for you. Our daughter was 12 when I was diagnosed. She has tested negative so far. But let me tell you she does not miss eating gluten at home. She prefers a homemade gluten-free cake over bakery made cake. Really! She eats it at school and when visiting with friends, etc. I send her off to friend's houses with cake mixes or some gluteny thing to eat. Everyone is supportive. I have learned to bake gluten-free free and freeze goodies to take to parties so hubby and I are never left out. I pack lunches for him and co-workers are actually envious of his lunches! Our families and friends know not to expect any gluten in our house and are fine with it. I suggest definitely not baking with gluten flour in your kitchen, but the mac and nuggets are doable. Oh, I was just anemic when diagnosed and my hubby's symptoms were like having the flu. Gut issues were not our problem and the lack of GI issues is one reason celiac disease is often overlooked. I swear my GI must have just attended a seminar (though I never asked).
  13. Congrats, Ennis! Looks like you are doing a great job remaining gluten free. I can not give you an opinion about the endoscopy. I have no clue what would look good or not.
  14. DH is not as common and we have fewer members. I can recommend that you ask your GP for a celiac screening and then a referral to a dermatologist who knows how to biopsy for DH. Then keep reading through the DH section for tips and suggestions. There is a very specific way to obtain a biopsy. Keep eating gluten because all celiac disease/DH testing requires you to be on a gluten diet. Do not go gluten free yet! celiac disease can cause other rashes as well. Hang in there and so excited for your new arrival. Best wishes!
  15. Great advice given.....I would follow it. But the good news is that as you heal, you might find that you can now eat dairy! Yep! Wait until you feel better and then try yogurt or hard cheeses (less lactose in those items). Of course, you might be lactose intolerant genetically, but let's hope not.