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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

cyclinglady

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About cyclinglady

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

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  1. Kaiser offers the full panel, but a primary care MD can not order it -- only a GI. Again, a visual is not needed. Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.). Villi are microscopic though. When you got the referral, you probably should have found a GI on your own by searching through the Kaiser directory and finding one who has some mention of celiac disease in his bio. Too late, but that is kind of how it works. Your PCP does not know the GI docs. The scheduler just makes appointments. So, now, that you have been referred to a GI, you can probably schedule another appointment on your own by passing your PCP. Wait first for the pathologist's report. They might not put it on the patient portal, so get a hard copy for your records. If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet. If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this). You could wait a few years until you think damage is severe enough to find. celiac disease can be hard to diagnose. It can develop at anytime. Don't forget you might have a gluten sensitivity too and not celiac disease. Kaiser responds well to requests in writing. Try the patient portal first before a registered letter. If they are not following the standard level of care, they are at risk for a lawsuit. Be nice. Say something lame in your letter like, "We had such a nice short visit, so I forgot to ask ....blah, blah, blah." My own relatively new PCP is still learning about celiac disease. That is okay. At least she has an open mind.
  2. I would not worry. Things might resolve on the gluten free diet as celiac disease does impact fertility in many ways. I hit perimenopause at 40. It lasted over a decade (the range of years varies from person to person) and I experienced every single perimenopause symptom (on and off) in the book. I was diagnosed with celiac disease after I went though menopause because of anemia that would not resolve. You could ask your GP/PCP to order a hormonal panel (include thyroid) if you see him/her sooner. This will let you know if you are starting perimenopause. My Mom breezed through menopause. Not me!!!!!
  3. Best Foods or Hellman's on the East Oast is Gluten free. You can make your own too! Easy! http://www.foodnetwork.com/recipes/alton-brown/mayonnaise-recipe I buy any brand of sugar.
  4. Are you sure you do not have fractures? I fractured two vertebrae two months after my celiac disease diagnosis DOING NOTHING!!!! Turns out I have osteoporosis from untreated celiac disease. 😡 Consider a bone scan.
  5. Be sure to let us know how it goes! Help keep them in business by writing a review on Find Me Gluten Free! Enjoy! 🌮
  6. If you are worried about your glycemic levels, then you should test with a glucose meter. I have diabetes (insulin resistance/TD2) and rice and potatoes spike me like crazy! I might as well consume ice cream! But if you do not have diabetes, no worries!
  7. I agree with Ennis. It sounds like she is getting access to gluten way too often to expect healing. I had some pretty severe patches of intestinal damage when I was diagnosed. Anemia was my symptom and I had no gut issues then. So, just because she injests gluten and does not have some major symptoms right away, does not mean she is not building up antibodies. Have those antibodies been re-tested to see if they are in the normal ranges now? Missing patches of damage in the small intestine is possible. Heck, the small intestine is the size of a tennis court (goggle it). So easy to miss. Also, your GI should have taken more than four samples? How many were taken? (Forgive me, if I have forgotten.) Cross contamination in your house is real, especially if you have kids in the house. Member Jebby, a preemie doctor who has celiac disease, was not getting well. Turns out her four small and adorable children were glutening her. She made her house gluten free. Just something to consider. You mentioned she had access to gluten at a party. So, does that mean she caves in and eats it? She needs to become a stakeholder in this diet.
  8. I think that if you soaked in the paddle in vinegar and scrubbed it a few times, you will be fine. But if in doubt, just set the mixer aside for a while until your family's health has improved. In the meantime, use your arm to mix dough! My grandma never had a mixer! I bought a bunch of new stuff because I had been married for 25 years when diagnosed. It was time for new things! Everyone is different in their response to gluten. Science has given us a good estimate, but we know that nothing is "one size fits all". You just have to figure out what is best for you and your family. My anemia resolved within months of being gluten free (ferritin levels). I still have Thalassemia, but it is mild and my body has adapted. It is most likely the one reason that I never made the Olympic team! 😆 BTW, family and friends are not allowed to bring in gluten into our house with the exception of beer. They can contribute to a potluck by bringing beverages, uncut fruit and veggies, new condiments, tableware, and ice cream ......etc.
  9. FYI......anxiety is a common symptom with celiac disease and NCGI. It seems to resolve on a gluten-free diet. 😊
  10. Imagination? Does it matter? Feeling safe in the one place you should be able to let down your guard is very important. We had a shared household before my diagnosis. Hubby was gluten free. I did all the cooking, shopping and food prep. It worked. He was kept pretty safe. That first year was rough though! Lots of mistakes. Then a decade later, I was diagnosed. Add to the fact our daughter wanted to help in the kitchen, we decided that gluten had to go. It has been great. No one has to worry. Our kid gets a gluten fix at lunch and while with friends. She actually eats better than most of her teen glutening-eating friends. (SHe has tested negative.) Anemia was really my only symptom when I was diagnosed. Each glutening (two big ones) has caused my symptoms to escalate. Now, I get all the classic symptoms and have developed new issues along the way. So, a little bit of gluten can hurt. We all react differently. For some, it is just a few days of misery. For others it is months!
  11. Hi Everyone! Just wanted to chime in about my personal experience. I went for a GI consult because due to my advanced age (over 50 😆), I qualified for a screening colonoscopy. A long history of anemia is what caught my GI's eye. I have a genetic anemia too, so that was always blamed for my anemia (beside being a woman). I tested negative on the entire celiac blood panel -- except the DGP IgA. Luckily my doctor ordered the entire panel. My GI told me that visually I looked good during the endoscopy. However, my biopsies revealed a Marsh Stage IIIB which is moderate to severe damage. So, while it is hard to wait for the biopsies, it is needed for a diagnosis. If by chance, your results are negative, considering trialing the gluten free diet. You might just be developing celiac disease or you might have Non-Celiac Gluten Intolerance (or whatever they are calling it now). I wish you well!
  12. You have had celiac disease for 9 years. You know the drill. That is not in dispute. I think there is something definitely wrong. Your GI needs to do more investigative work to determine the root cause of your symptoms. Other GI issues need to be ruled out (the list is too long but stuff like ulcers, Crohn's gallbladder, ducting issues, cancer). But as a celiac, one of the first things to rule out is a gluten exposure. Maybe something in your environment has changed and you have not noticed it. It happens to the best of us, so we always ask. From personal experience, my "glutenings" have not been consistent. Each time I had to ask my GI to check because my symptoms were so varied (strange when I just had anemia as my only symptom when diagnosed). But if my symptoms did not resolve and my blood tests were okay, I might insist on another endoscopy to really rule out villi damage and/or to look for other possible issues (like cancer). Let's hope that others might have experienced your exact symptoms.
  13. Once a celiac ALWAYS a celiac!!!!! It is for LIFE and there is no CURE. 😟 A gluten free diet can help. Not treated and the risk of cancer and developing other autoimmune disorders (like type 1 diabetes or thyroiditis) is possible. I am sorry that your are mis-informed. Celiac disease is no longer the picture of a malnourished child but can be a fat adult! There are over 300 symptoms attributed to celiac disease. Some celiacs are symptom free! Symptoms can wax and wane. It is genetic to some extent. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/ Please do some research about celiac disease. I hope your daughter starts to feel well. She should get annual celiac exam check ups. If she has been eating gluten, consider getting the endoscopy so that you have NO doubt. I wish her well!
  14. Who is your insurance carrier? Just curious. My docs here in CA are all computerized. That looks like a prescription (Rx) and not a lab order. No codes, etc. is your allergist an M.D?
  15. I do all that stuff (pet food, a lot of make up, shampoo). My house is gluten free (hubby and I both have issues with gluten....go figure! 😳) It does not make me housebound! Gee, your wife could be glutening you just by kissing! Nine years. I would do the endoscopy for that reason alone (am holding out for five years). The blood tests are not always accurate. Symptoms can wax and wane. keep advocating for your health.