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About cyclinglady

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    Advanced Community Member

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    CD diagnosis: 3/2013 via antibody testing and biopsies
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

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  1. Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance? I notice you joined in 2014. Did you ever go guten free? How can we help? Sorry, I'm not a stool expert! You could Google it... Malabsorption? Standard lab tests that check for anemia and vitamin deficiencies, etc. should help make that diagnosis.
  2. You can eat just a slice or two (or equivalent) of bread a day for accurate testing. I understand about the high deductibles. We're self-employed and we pay for our health insurance.
  3. Sure, if it's gluten free, then fine. I am very allergic (like anaphylactic) to ibuprofen and aspirin. So, in my case, I would just tough it out. Go to bed. Sleep it off.....eventually. My money is on the garlic and onions. I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano). I just season with salt, pepper. Boring. But no gut issues. I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back. Finally, sometimes just eating anything can hurt when you still have intestinal damage. Hopefully, you'll feel better in two or three hours if it's celiac related. Longer if it's an intolerance (leaky gut thing....) Hugs!
  4. Excellent point, GFinDC!!! I just assumed that Steph had the endoscopy and not just the antibodies tests.
  5. She (your PCP) can order a celiac blood panel. It might not be a complete panel, but it's a start. Any medical doctor can order one. A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder) or colonoscopy (IBS). Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel. You could go to the lab before or after work. Pretty easy!
  6. I am not a doctor that's for sure. So, I can't even answer your questions. If you know you have pre-diabetes, you probably are working with a doctor. Can you email them and ask for a celiac blood panel? You can work on the weight loss and diabetes -- that you can handle yourself now and take action. I have diabetes and my glucose readings are fairly normal now without medication and I'm thin. Being overweight does not cause diabetes. It's either autoimmune (type 1) or you become insulin resistant (type 2). You can cut out all sugar and processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance). But the prediabetes is not going to kill you in the next year. Whatever's in your gut is more likely going to get you much sooner. But heck, I'm not a doctor and I don't even know you!
  7. The first step is getting a celiac blood panel. Any medical doctor can order one. Live near Chicago? They are do free screenings this month (check their website). The cost is less than $400 for the complete panel. If you get a positive on any one of them, then you should be referred to a GI for an endoscopy to obtain intestinal biopsies. Here's more information from a reliable source and not just some lady on the internet: Having had my gallbladder removed (probably ruined from undiagnosed celiac disease, but I don't know that for sure), I would recommend a HIDA scan. I have no idea how expensive that one is. It's a nuclear test that checks for functionality. Basically, is your gallbladder squeezing bile into your small intestines when those fries or bacon come down the tube. Mine happened to actually be rotting (infected). ER suspected appendicitis, but it was a rotten gallbladder. I never had any stones (that's what the CT or the ultrasound can find). I am sorry that you are ill. Keep eating gluten until all testing is complete. This is important. Go gluten free now? Here's why you shouldn't.....
  8. Welcome! At least you know what the source of your illness is....celiac disease. Now you have some validation. Feel free to write a letter to your old doctors. Be nice. Maybe you'll save someone else from the diagnostic hell you've been through. Okay. There's a grieving period. That's normal. We've all been there. Now the faster you go gluten free, the better you will feel. It will not be immediate, but slowly you will get well. It took you time to get really sick and time to heal. does and can cause all the problems you mentioned! celiac disease affects so many areas of the body and not just the GI! Read. Read. Read all that you can about celiac disease and the diet. Start with our Newbie 101 thread located at the top of the "Coping" section of the forum. It contains lots of common sense advice. has several articles on the main page that will help as well. Gluten is everywhere and you need to figure out how to avoid it. Cross contamination is real! Bet your doctor just sent you on your way with a list of gluten-free restaurants! Ha! celiac disease is genetic. So, your Mom should be tested. All first-degree relatives should be tested even if they are symptom free. Yes, there are silent celiacs!! Hang in there!
  9. He is checking you for several things. That is great news. If he strongly suspects celiac disease (and the TTG igA test is negative), please ask for the complete panel which can include the DGP and EMA tests. Why? I personally test negative on the TTG. The TTG is a good screening test because it catches most and is the most cost effective test, but it is not perfect.
  10. How about reaching out to your local celiac disease support group?
  11. I am sorry to hear about your mother. It is not so hard to get a medical doctor to order a celiac panel -- especially if your father was diagnosed with celiac disease. Our family GP did not blink an eye when I first asked my daughter to be tested. If you think your doctor will disregard your legitimate request, you can either fire him or put the request in writing and send it certified (attorneys love documentation!) I agree that our doctors should support us. I have a great GI, but my GP is pretty clueless when it comes to celiac disease, but she admits it. She does always order all the lab tests I request. Perhaps it is because I come in with supporting medical documentation and evidence. If she was not supportive to my satisfaction, I would find a new doctor. Again, you can go gluten free in your own. Chance are you have celiac disease. But it is hard. Really hard if you do not have the support of your family. That is my concern. Are you in the US?
  12. You are right, the tests could be invalid. All the celiac tests require you to be on a gluten-containing diet. It is up to you to decide if you want to go gluten free. You can do it. Believe me, I know. Hubby is not officially diagnosed. He went gluten-free 15 years ago, based on the rather poor advice from my allergist and his GP. It worked though. But he would be the first to tell you that I have had way more support in terms of family and medical. We think he has it. Both of our families are riddled with autoimmine disorders. I am the first to be diagnosed. My Aunt went gluten free per the advice of her Chiropractor. Her other doctors never suspected celiac disease. The diet obviously worked for her. Her daughter (my cousin) is a nurse. She had an endoscopy but they did not check for celiac disease. She chose to go gluten-free too since it worked for her mom. Both will not do a gluten challenge. However, my diagnosis has helped them get proper medical treatment. My Aunt is very active in a celiac support group. Now everyone in my family knows about celiac disease. My own niece was just diagnosed with Crohn's, but her GI did test and will continue to test her for celiac disease. You can develop additional autoimmune disorders at any time. So far, a few other members have been tested. No one else had had a celiac disease diagnosis yet. Time will tell. If I can save someone from the misery of struggling to get a diagnosis, then I can feel good. Now, an official diagnosis will help you adhere to the diet . You can get follow-up care. Get checked for other things like SIBO, H. Pylori and cancer. But ultimately, it is up to you. Whatever you decided to do, please consider a family health history chart. You might someday help a grandchild. The stool tests? In all my research, leading celiac experts do not recommend them. gene testing? Some 30% of the poulation carries the celiac genes. It just tells you that you have the chance to develop celiac disease. It can not diagnose you.
  13. Why would your doctor order an endoscopy and check for celiac disease, but not order a celiac panel? Had you been gluten free already?
  14. Try to stick to a whole foods diet. Things like unseasoned stew, soup, etc. Things easy-to digest, preferably not processed by a anyone except you. Too often new celiacs start using gluten-free foods (cookies, bread, crackers). Your body is not used to these grains and they often contain lots of junk. For example, I react to Xantham gum. It does not bother my gluten-free hubby, but it gets me every single time! Did you read our Newbie 101 thread under "Coping"? It contains lots of valuable tips. Make sure those meds are gluten free. Supplements too. I hope you feel better soon!
  15. Here are the actual tests. Insist on the complete panel. Let them know (your doctor) that your father had celiac disease. Document in writing! If you have celiac disease, your life can be improved. All the things I attributed to aging were actually related to celiac disease. It is never too late to feel well! I am in my 50's but my Aunt iis 81. We celebrate a Gluten free Thanksgiving every year! Oh, my kid does not have celiac disease, but she is tested every few years even though she is symptom free! There are silent celiacs. My symptom? Anemia. No tummy issues. Please advocate for your health. Keep all records. Doctors can not ignore written facts and requests.