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      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


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cyclinglady last won the day on January 16

cyclinglady had the most liked content!

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About cyclinglady

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    Advanced Community Member

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    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. 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.)
  2. 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.
  3. 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!
  4. 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? 😆
  5. 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!
  6. 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/
  7. 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....
  8. 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!
  9. 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/
  10. 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!
  11. 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.
  12. Great news! I have have joined the “Peter club”! My villi are healed! The gluten free diet is working! I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage). My main symptom was anemia which I recovered from in just a few months with iron supplements. Minor symptoms persisted the first year as I discovered food intolerances (e.g. Xanthan Gum) and worked with known intolerances (lactose, garlic, mushrooms, eggs, etc). Many intolerances resolved (and some did not) as I healed. A year later, I was diagnosed with diabetes and further modified my diet (fewer carbs, more fats, less sugar, even from grains). I did well. I did not return to my GI and instead worked with my PCP. I never had my antibodies tested after my initial diagnosis to see if they were coming down (bad move). I did get a bone scan after I experienced some fractures and was checked for nutritional deficiencies. I stupidly assumed that my antibodies would always be elevated like my thyroid antibodies have been for 20 years. I strongly recommend annual check ups for celiacs. Over the years, My DGP IgA levels were off the chart tested after hidden gluten exposures. My symptoms were severe and were not consistent which prompted my visits to my new GI. I would recover, though it took months....like 6. In January 2017, I think I was glutened again (I had not eaten eaten out for a year except at 100% gluten-free restaurants ), and I ate mostly unprocessed foods. I had a tooth infection, tooth extraction, flu and a cold all in a span of one month. I developed chronic hives that last for six months. So, I went back to my GI (off the charts DGP IgA). My allergist blamed my Hashimoto’s or an undiagnosed autoimmune issue, my PCP just mentioned how I am always chronically inflamed. My GI offered an endoscopy, but I declined. Instead, I opted for a slightly modified Fasano diet. I did not give up coffee! Finally, I was still having abdominal issues, so I requested the endoscopy for the first week in January. Why is my DGP IgA always elevated? Where was I getting gluten? Heck, my hubby has been gluten-free for 17 years, so I know the diet. He was okay though there are some things he never eats and I do. Am I super sensitive or am I developing another AI issue? Maybe since I have other antibodies (thyroid) floating around, I should discard this test result (not much research for post diagnosis testing issues). I was driving myself crazy. So, I needed to know for sure what was going on. This time, my new GI had a newer scope. I was shown the results (photos) while in recovery. You could could see the villi as the magnification was that strong). I did have a stomach polyp which was removed and biopsied. The pathologist reported no damaged in my duodenum, and that the polyp was not cancer and no H. Pylori. He noted chronic gastritis (this explains my stomach pinching sensation and indigestion, etc.) I was advised to continue my gluten free diet. I assume my stomach is still healing as my antibodies are no doubt still elevated (off charts in 4/2017 and 80 in 11/2017) though hopefully lower than 80. I am now considering giving up coffee for a while and looking into foods that will help heal the gastritis since I react to so many different medications (anaphylactic) and each medication must be carefully monitored. Oddly, did not have gastritis when I was initially diagnosed. I am happy to be a part of the Peter club! I plan on staying on the modified Fasano diet until my stomach has healed (though I did eat some homemade (Xanthan Free) cookies over the holidays). I am also happy to report that my HA1c (diabetes test) was in the normal range! Yes, normal, not even prediabetic! So, it is possible to mange Type II diabetes without drugs. I typed this on an iPad, so expect errors. I probably made a few mistakes regarding times too, so expect a few tweaks here and there by the end of the day.
  13. Help!

    Dang.....another hasty reply by me! I guess I was thinking about myself. I need to post an update on my progress which could help a few people. Great catch and thank you. 😄 So, Karen’s advice to go on the Fasano diet temporarily might be the best solution for active celiac disease.
  14. So interesting! Kraft (Unilever too) has a long-standing policy of disclosing gluten ingredients. But they only clearly label a product “gluten free” when they have tested it to less than 20 ppm. http://www.kraftrecipes.com/recipes/healthy-living/gluten-aware-recipes/label-reading-for-gluten-information.aspx So, ingredients change all the time on processed foods. The lesson being READ ALL LABELS EVERY SINGLE TIME. So, I would assume that they recently changed their ingredients on this product. Me personally? I used to buy Jello products and I did not get glutened by them, but I prefer the real thing. I make my puddings from scratch. Even my brother still makes pudding on the stove. We even like it hot, because as kids we just could not wait for it too completely cool and set! 😂. I like the idea of less ingredients (preservatives, sugar and coloring), but I get the convenience of boxed puddings and jellos.
  15. Celiac experts are not supportive of Enterolab for celiac testing. Consider getting standard celiac testing. Learn more at http://www.cureceliacdisease.org/screening/ Pancreatic is sufficiently is commonly linked to celiac disease. If you are diagnosed with celiac disease, doctors are more likely to keep an eye out for cancer down the road. It sounds like you had a family member who had pancreatic cancer. Supplemental enzymes can help, but getting to the root cause is even better. I will not repeat the rest of Ennis’ advice.