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cyclinglady last won the day on June 13

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About cyclinglady

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    DGP IgA positive only, Marsh Stage IIIB
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  1. If you can feel it and manipulate it, your GI should check you for a hernia or fatty tumors. Both my dog and my neighbor had fatty benign tumors. Of course cancer should always be ruled out. Now that you know you have celiac disease and not all your symptoms are resolving (and you are adhering to a gluten free diet which repeat blood tests can reveal), look for other autoimmune disorders. Many of us have multiple ones. Dry eye? Rule out sjogren’s:
  2. I was very surprised. I had no idea I had celiac disease or even suspected it. Testing is critical for a diagnosis. I encourage the full celiac blood panel because I only tested positive to the DGP IgA which is not common. My biopsies revealed intestinal damage.
  3. I simply had anemia — no GI issues. Two months after my celiac disease diagnosis, I suffered two vertebrae fractures doing nothing. As a result of undiagnosed celiac disease, I developed osteoporosis. You can see how differently celiac disease can present.
  4. @vvicin02— normal protocol is to remain on gluten until all testing is complete, even the endoscopy (so many primary care physicians do not know this). I do not know your health provider (some health plans take up to a year to obtain an endoscopy (e.g. Canada) or your financial issues), but you will need to be back on gluten a good solid two to four weeks prior to an endoscopy otherwise the GI might see a healed healthy small intestine. I say might because we all heal at different rates. I put off my endoscopy for seven weeks due to work issues. I took the time to bid a fond farewell to my favorite foods. Just keep in mind the possibility of become sicker going back on gluten is very real. Some people can not even complete the full two weeks or so.
  5. Ask your GI to check your antibodies. Rule out celiac disease as the culprit. To learn more about celiac disease follow-up care: A repeat endoscopy might be needed.
  6. I think you have to wait for test results. Celiac Disease has over two hundred symptoms. Problem is they often overlap with other illnesses. Welcome to the forum.
  7. cyclinglady

    Celiac in AZ?

    You might meet some at the Gourmet Girls Go Gluten Free on Oracle or at Dedicated on Speedway. Both 100% gluten-free!
  8. Thanks! Just a few years back, some GI’s were wondering why their patients were not getting well. Turns out a big chunk of the probiotics they tested were contaminated with gluten. I hope this issue has been resolved. Likeyou, I suggest a gluten free product that has been tested or try adding fermented foods into your diet. This is a blog published in the New York Times, but the links and research is valid.
  9. Put your requests in writing. Be direct and specific and list the reasons why you should get tested for celiac disease. Your doctor should respond. If you do have celiac disease and he refused to screen you despite your asking, he is setting himself up for a lawsuit. Or....just get another doctor.
  10. This is so true. A gluten exposure for me triggers increased antibodies for my other autoimmune disorders and sets off my entire immune system. I also have the weirdest allergies which are due to Mast Cell Issues. I get a bug bite and a thousand hives will appear. celiac disease is part of the four types of Hypersensitivity and they often are interlinked.
  11. Carbs do not sit well with me either, but that is because I have diabetes and my glucose meter is not happy when I consume too many carbs. But carbs do not impact my celiac disease, gluten does. However, a damaged gut will have trouble processing ANYTHING. Our gut becomes “leaky” due to too much Zonulin leading to other various food intolerances that may or may not resolve with healing. Watch this video about celiac disease, leaky gut and Zonulin which was discover by Dr. Fasano’s team. He is a PED GI specializing in celiac disease. One of the world’s leading experts in the field. When glutened, I go to easy-to-digest foods like soups and stews that I eat for breakfast, lunch and dinner. It takes me a few weeks to be able to go back to my original gluten-free diet. Sadly, I become temporarily lactose intolerance again but that soon resolves. Celiac disease is autoimmune like lupus or rheumatoid arthritis except the trigger is known—gluten. Once triggered the body starts attacking. The duration varies from person to person. You can skip the dietitian if you are willing to research the diet on the internet or head to your library. There is a grieving process. I gave away all my baking pans. I used to even bake my own hamburger buns. But I have learned to adapt and so will you. Stick to naturally gluten-free foods as much as you can. Give yourself time to forget what real bread tastes like and then start trying Tessa’s suggestions. They will taste so good then!
  12. Yeah, that might have been me. Turns out that even going on the Dr. Fasano diet, I was still not well. I thought I was going crazy. I finally went back for an endoscopy after a suspected glutening last year. Turns out that my villi had healed, but that I had Chronic Autoimmune Gastritis (which thankfully is no longer flaring due to time and patience). Consider seeing a GI and get tested for other issues like Crohn’s, SIBO, H. Pylori, allergies, etc.
  13. Really the gluten free diet does not need to be expensive. Beans and rice. How cheap is that? Just buy dried beans and rice (visually sort and wash). Eat for days (add in to your diet: veggies and fruit, eggs (other protein sources), dairy, nuts), and freeze in smaller portions. Corn tortillas freeze well too. Cheap. Look for sales. Want chicken, but it is not on sale? Skip it. Wait for the sale and buy then. I take no vitamins. I have lots of allergies, so I avoid them. My vitamin and mineral levels have recovered and my villi have healed. But if you are not going to take vitamins, you need to eat a varied healthy diet. Consider going to a food pantry. We support our local pantry with gluten-free pasta and other shelf stable gluten-free items (they have naturally gluten free items too). If they do not have it, they can get it (if they are a good pantry). Ask for help!
  14. cyclinglady

    Looking for remote counselling/support

    It sounds like you have improved significantly and are on the right track. Anxiety and depression are common issues with celiac disease, so you are not alone! Please give yourself more time. It took me over a year to finally feel well. I felt better when I went grain free when I was diagnosed with diabetes after a year into my celiac disease diagnosis. When my antibodies are up (and not just just the gliadin antibodies as I have a few more autoimmune issues), Anxiety can happen and depression can set in. I refuse to take any medications, because frankly I am allergic to so many! So, I use exercise ( walking is a start) and social outlets to overcome my depression. Even just sitting outside helps. I volunteer and that helps because I am doing something for others and not focusing on me. I play in an orchestra where I can socialize and food never enters the picture. I also meet with friends to walk. My friends love it. Last year, I had a tooth infection, got the flu, a cold, developed chronic hives (which lasted for six months), and glutened all within a month (based on antibodies testing and symptoms). I was a physical wreak. I was so down because I was doing everything right when it came to the diet. I had been gluten free for four years, but I had been preparing food for my hubby for 16 years. I did not eat out. Why was I sick? My GI offered another endoscopy, but I resisted. Finally, I had it done 11 months later. I had healed from celiac disease but was diagnosed with Chronic Autoimmune Gastritis. My theory is that my tooth infection and the flu triggered my immune system. It was so hyper! Of course the only AI I can control is my celiac disease with the gluten free diet. It took time, but eventually everything calmed down. I am back to normal now. Dealing with autoimmune issues has taught me patience. Give yourself more time. If you can not find a group that is specific to celiac disease, get into any group. Just talking it out helps! It is one of the many reasons I participate on this forum!
  15. I was shocked when I got my diagnosis. Anemia was my main symptom too. My GI suggested testing for celiac disease when I went for a routine colonoscopy (yep, over 50 years old). I had no GI issues. Two months after my diagnosis, I fractured my back (2 vertebrae) doing nothing! Turns out celiac disease caused far more problems than I realized. So, make sure you get routine follow-up care: I strongly recommend getting the endoscopy if you can (stay on gluten or talk about reintroducing it two weeks prior to the procedure). It sets a good benchmark for follow-up testing, rules out other concurrent issues (e.g. SIBO, H. Pylori, cancer, etc.), and helps to eliminate doubt about your diagnosis. I have been gluten free for five years and my hubby for 17. It is doable. It just takes time! You can get great advice here.