• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

cyclinglady

Moderators
  • Content count

    6,072
  • Joined

  • Last visited

  • Days Won

    184

cyclinglady last won the day on January 16

cyclinglady had the most liked content!

Community Reputation

847 Excellent

About cyclinglady

  • Rank
    Advanced Community Member

Profile Information

  • 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

Recent Profile Visitors

19,957 profile views
  1. Sore nose

    Teresa, You posted this same question yesterday. You did get a response, but you did not answer the questions asked which might help you. We can not diagnose you over the internet. We are not doctors, but just people who can not consume gluten. We share tips, our personal experiences, and ask questions about the gluten free diet. If you have or suspect DH, read through the DH section for coping strategies. Keep to the gluten free diet. Talk to your doctor! It might NOT even be related to celiac disease!
  2. Infertility

    Welcome! Let me put your mind at ease. While is true that some celiacs have fertility issues, it is usually because they are undiagnosed and not being treated. I think your approach of focusing on your health for the next six months to a year prior to conception is an excellent idea. Not only will it help insure a healthy pregnancy, but you will be able to handle and care for that baby for the next few decades! I was in a dedicated gluten free bakery and saw a young family with a six month old baby boy. I love babies and struck up a conversation. They said that the wife had been sick with odd issues and finally got diagnosed with celiac disease. Six months this later, she got pregnant after they had been trying for three years. So, learn the gluten free diet. Choose healthy foods and try to avoid processed junk foods (not good for anybody), excercise gently, reduce the stress in your life, and I bet you will be fine! Green stools can be a sight of rapid transit. It could be gluten, a virus, or food poisoning. Stay hydrated and you will be fine. Celiacs have leaky guts, so you might have developed an intolerance. How long have you been gluten free? Try reading our Newbie 101 thread located at the top of the “Coping” section of the forum. Take care.
  3. I would trust the label over what some customer rep said on the phone but consider calling back and talk to a supervisor. I looked up the product and confirmed there was no gluten. I can not imagine gluten being added. The rep might think “stuffed” is the same as “stuffing” as in turkey. 😆 Seriously, there was a time when blue cheese was questionable as being safe for celiacs. The mold might be been grown on a wheat or rye medium. Learn more from Trisha, a gluten free dietitian and owner of the Gluten-free Watchdog. https://www.glutenfreedietitian.com/blue-cheese/ I do not know about you, but when I doubt a product, I usually do not purchase it as their are some many other good things to eat. I don’t always have the time to do the research and sometimes piece of mind is priceless.
  4. You had a positive on the blood panel. That usually means the next step is an endoscopy, which you had done. So, now you need to wait for the results. I can tell you that my doctor told me that everything looked good, but the biopsies revealed vill damage. I also only had one positive on the panel (DGP IgA). That was five years ago, some doctors have scopes that can now often visually see the damage. Hang in there!
  5. Welcome! Get that follow-up testing. At least help confirm that you are compliant with the diet and that celiac disease is not the root cause of your brain fog and anxiety. Once ruled out, your doctors can focus on other possible AI issues that are beyond your control (unlike celiac disease). For now, you can focus on a good healthy diet. Consider a modified AIP diet. I just read a study involving this diet and IBD (autoimmune) done by Scripps in San Diego. There was a 77% remissions rate. Amazing! This can (in theory) be applied to other autoimmune issues. It helps to validate that diet can heal. http://journals.lww.com/ibdjournal/Pages/ArticleViewer.aspx?year=2017&issue=11000&article=00021&type=Fulltext here are some follow-up guidelines: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Hang in there. Consider Ennis’ tips too, but I prefer and do well without supplements. My doctor has checked me for deficiencies and so should yours. You need to really figure out what is best for you (food, supplements, etc.)
  6. I think if you search through this section of the forum, you will find that many children see a quick drop in their antibodies. Recovery can come fast or slow in both kids and adults. We are all different! I can tell you that my antibodies are still high, yet I had a repeat biopsy done last week showing healthy villi (Marsh Stage IIIB at diagnosis five years ago). So, here I was beating myself up for having elevated antibodies which made it look as if I was not diet compliant, and I was actually healed. Researchers have not done a lot of studies about repeating the antibodies tests after diagnosis to monitor progress (lack of funding for sure). Repeat antibodies testing is not perfect, but it is the only tool in the box right now. We suspect my antibodies (DGP IgA only positive on the panel ever) are up for other reasons (e.g. my Hashimoto’s, another AI issue, residuals from a previous gluten exposure). I do have symptoms but these were attributed to other things including chronic gastritis which, since I do not have active celiac disease, h. Pylori, drink alcohol, and am allergic to NSAIDs and other meds, is probable autoimmune. Great job on keeping him safe! I am glad he is feeling better. He is seeing results from the diet which helps confirm the diagnosis. Systemic issues can take longer to heal, so just keep moving forward.
  7. Shopping for health insurance can be a nightmare, but it was way worse prior to the National Healthcare Act. It was pretty much impossible to compare plans back then. It is still tough though. We are self employed and have been buying insurance for 20 years. If your doctor does not have a secure email system, then send it though the snail mail. It is legal and safe and it is a federal offense to tamper with mail. You can also go to a UPS store or Kinkos and have them fax your letter for a small fee. Depending on the letter content, I would send it registered mail. It does sound like your doctor’s office made an honest mistake. Be sure to follow-up in a few days. They should have your results at the top of his in-basket!
  8. The Powerade brand is most likely fine (I have not read the label lately), but they do not want red, blue or purple in your gut at the time of scoping. It must stain and look like blood or inflammation. Ever see a kid eating a blue popsicle? 😆
  9. Nausea!

    I am sorry that you are sick. Ten weeks is just a short amount of time to expect healing. Things can actually get worse. The gluten free diet has a very steep learning curve. So, expect to take a step forward and some days you will step back. Consider reducing processed foods and avoid eating out until you feel better. Check out our Newbie 101 section under “Coping” for forum member tips. Remember, that celiac disease is an autoimmune disorder. Your antibodies can take months to over a year to come down (I kid you not!). They take time to ramp up and then come down. Everyone is different in terms of healing because they have different types of collateral damage (like gastritis, osteoporosis, other autoimmune issues, anemia) which take time to heal. Not to mention that a damaged gut is a leaky gut and intolerances are common (e.g. lactose). Some of those intolerances will resolve and others will not. Be sure to get good follow-up care (like antibodies checked in three to six months) as recommended by celiac centers. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Hang in there!
  10. Welcome! It could mean that you do not have celiac disease. What were the lab ranges? Have you been eating gluten every day for the past three months? All celiac testing requires a person to be on a full gluten diet. Was an IgA deficiency test (Immunoglobulin A) run? In the case of diagnosing celiac disease, it is used as a control test (determines if the TTG IgA test actually worked). If you are IgA deficient, you might need additional celiac diagnostic tests. If you think you have celiac disease, then you could ask for the rest of the celiac panel (EMA and DGP), because although the TTG is the most common celiac screening test, it does not catch all celiacs (like me). If my doctor had not run the entire celiac panel, my diagnosis would not have been made. 😥 learn more about testing: http://www.cureceliacdisease.org/screening/
  11. What? Have you called your doctor? Maybe, the referral slipped though the cracks. Was your insurance even contacted? Then follow-up with an email and if you do not get a response in a few days, then send a registered letter. Either a careless mistake has been make or your doctor is grossly incompetent. You have rights! Be nice. State that you had positives on the celiac blood tests and that all leading celiac centers and the American GI Association recommend that the next step be an endoscopy to confirm the diagnosis. Attach links or print a document. Doctors hate setting themselves up for a lawsuit. Once it is in writing, they must (maybe not if they are idiots) take action. If your insurance is balking (it is all about the money sometimes), do the same thing. Document so that you can go to your state’s insurance commissioner and file a grievance. Then consider contacting the medical board. Keep all health records for the rest of your life. Heck, when I want something from my doctors, I ask them in writing. “Can you order a antibodies test for celiac disease? I think I am getting a hidden gluten exposure and I have these symptoms.....” or “It’s been Two years since my last bone scan.” I have NEVER been denied any request. An endoscopy is $1500 and up. Hard to say, as there as so many factors to consider. But a GI consult might be worth spending $250. It might get your insurance or provider to move faster and if you are building your case for a lawsuit, that might be considered money well spent. Skip the Fasano diet. Just a tiny amount of gluten is going to set off an antibody reaction. You can slow it down to a 1/2 slice of bread per day (or equivalent) based on the University of Chicago’s recommendation. That might reduce symptoms or not....
  12. Chewing Your Food

    Hey Elliot! Chewing your food well can aid in digestion, but if your wife’s celiac disease is still active, then it does not really matter. A damaged small intestine can not absorb nutrients or often release enzymes necessary to aid in digestion. How long has your wife had celiac disease? Has she had follow-up testing to help determine if she is getting hidden amounts of gluten into her diet? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ How is your wife handling osteoporosis? How many bone scans? Any improvement? I have osteoporosis and have had a few fractures. I decided to treat with hormone replacement my first year since I just had entered menopause and bone building exercises. My scan shows that I am holding steady and I have not had a fracture in five years. I am happy with my progress as are my doctors. So nice to have a concerned husband!
  13. Hair loss

    Have other autoimmune disorders been ruled out? When was the last time your antibodies were tested for active celiac disease? http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/
  14. The risk for cancer due to untreated celiac disease is really, really low, especially in a young person. So, no need to worry. There are long term complications for not complying with the gluten free diet as you have probably googled. For example, most likely some bone damage as this is the time in your life you should be building as much bone as possible or developing another autoimmune disease. It is good that you made an appointment with your doctor. Have him run another celiac panel to see where you stand. Then work at getting those antibodies down over the next year. Continue to do follow-up testing as the labs can let you know (besides symptoms) if you are consuming gluten. http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Celiac disease is like a chameleon. Symptoms can wax and wane. I just had anemia when I was diagnosed. Now, a gluten hit can mean six months of feeling ill. Gluten is not worth it. We are here to help each other, so ask any questions!
  15. Ennis is correct. Doing a gluten challenge to get celiac testing could be dangerous. However, your allergies might not be severe as your allergist did not issue you an EPI pen (most allergy testing is not very accurate. You should discuss a possible challenge with your allergist and a GI. https://www.mayoclinic.org/tests-procedures/allergy-tests/basics/results/prc-20014505 http://acaai.org/allergies/treatment/allergy-testing https://www.allergicliving.com/2017/05/04/what-you-need-to-know-about-food-allergy-testing-and-proper-diagnosis/ If you are confident in your wheat allergy diagnosis, you need probably need to be extra vigilant on a gluten free diet. No cheating and watch for cross contamination.