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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.


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cyclinglady last won the day on February 26

cyclinglady had the most liked content!

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About cyclinglady

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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. Country Life vitamins are certified gluten free. But also look to good food sources. With healing, you should be able to absorb most from food. Need Vitamin D? Sit in the sun for a while. Eat sardines and salmon (oily fish) and lots of eggs (plenty of Vitamin b-12). What exactly is your definition of low blood sugar? Have you been tracking it with a meter?
  2. Welcome to the forum! Okay, I do not have DH, but I have a few suggestions. Read through our forum's DH section for advice and tips. You are in a bit of a quandary because you have gone gluten free. It is best to get tested (blood test, intestinal and skin biopsies) prior to going gluten free. It is best because all the celiac tests will be invalid if you have been off gluten for even as little as two weeks. A gluten challenge requires two weeks of consuming gluten prior to an intestinal biopsy and 8 to 12 weeks for a blood test. I am not sure about a skin biopsy but tissue needs to be taken,not on but away, from the blister (see the DH section). I understand that it is hard to find a dermatologist who know exactly how to biopsy for DH. You can see that your own GP is clueless. So, DH is awful. The itching is described as unbearable. It follows no pattern after a gluten exposure. You could be fine for weeks and then have a breakout and never figure out the gluten source. It takes a really long time for antibodies to resolve when they are in the skin. The only way to know for sure that you have DH is to get tested as your rash could be anything. But you have had some relief. Only you can decide what is best for you. But if you continue to be gluten free, you should stick to the diet for six months or longer. It can take a year or more for the DH rash to stop flaring up. I hope this helps. We do have a few DH members. You might hear from them. In the meantime all that you can on the subject. Look too, for a celiac savvy dermatologist or GI in case you do want testing. Any MD can run the blood tests, but again, you have to be consuming gluten. I wish you well. P.S. Celiac disease/DH is an autoimmune disorder and not an allergy. So, a negative on a wheat allergy test means you are not allergic to wheat. It does not rule out celiac disease.
  3. I do not know of a group near Atlanta, but I would recommend looking into a celiac camp for this summer. She might meet lots of "local" kids. There is one in Warm Springs, GA. Starts right after school gets out. Here is more information: I am old, but I wanna go to celiac camp! I do go to Lake Lanier where my family has a lake house, but I still have to think about food.....ugh!
  4. Yeah, celiac disease is a bummer. But it could be worse! At least you know what you are dealing with. Please take the cancer issue seriously. We just lost a member to lymphoma. We have another member who was mis-diagnosed and fortunately she has recovered from lymphoma (she also has diabetes). Diabetes is linked to celiac disease, but only type 1. I am untyped, but after three years (I did not get GAD antibodies testing for many reasons), my doctor and I think I have TD2. I am a skinny diabetic, so you just never know. Talk about dietary restrictions! I never cheat on the gluten-free diet, but I do cheat on a low carb, high FAT, diet. I bought a cheap meter at Walmart and have tracked my results. I have identified foods that really trigger high glucose readings (mostly things like rice and potatoes!!!). If my blood sugar GI's wonky (I only test periodically now), I will ask for antibodies testing. My doctor is okay with this since the treatment is identical at this point. I also am trying to avoid any medications as most affect the gut and my gut has already been damaged (hopefully healed) by celiac disease. We are a gluten-free household. Both hubby and I need to be gluten free. Our daughter gets gluten outside the house at school. You can eat cheaply on a gluten-free diet, if you avoid the gluten-free processed foods (like avoiding gluten-free bread). We eat a diet rich in veggies, fish, meat, eggs, nuts, dairy, fruit, grains (for family, not me), etc. I buy foods on sale and stock up. I also cook in large batches and freeze. It takes planning on your day off, but it is possible. Get your family to look for store bargains. Kids love finding deals. We eat lots of eggs smothered in butter or as egg salad. I make chilis. The list is endless. Check out our old "What's for dinner thread." Most meals are take less than 30 minutes. Again, planning is key. You can do this! Oh, see if there is a local celiac group. That might help you too!
  5. Yes, celiac disease is genetic, but only a few go on to develop it. It can develop at anytime in your life. Here is more information about a simple blood test (University of Chicago's celiac website): This is must be consuming gluten daily for any celiac test to be accurate. So, do not give up gluten yet. I wish you well.
  6. IBS is really code for "I be Stumped". Chances are your IBS is really celiac disease, especially since you had a positive on the blood test. Doctors are now being asked to screen patients for celiac disease if they have IBS. You could just go gluten free, but there are some issues that can arise. Without a formal diagnosis, it is hard to get family members screened. Celiac disease is genetic. It also can leave you with doubt. I know that I personally needed a diagnosis in order for me to stick to a gluten free diet. Why? My husband had been gluten free for 12 years. I knew all the dietary restrictions. If your doctor is willing to diagnose you based on your blood test, then get it in writing. But really an endoscopy is the way to go if you can afford it. It can rule out other isssues (SIBO, H. PLylori, etc.) that you might also have in conjunction with celiac disease. I wish you well.
  7. I can not comment about soy, but really you just need to make sure you do not eat gluten. So, I watch my lipstick, facial sunscreen and lipstick. I use CeraVe products, but last year, I noted that their sunscreen now contains oats. Here is what the gluten-free Dietician (she also is the Gluten Free Watchdog which is like a gluten-free Consumer Reports) has to say about this topic: I hope this helps!
  8. TexasJen expressed my thoughts exactly. No beer for me. I do not care for gluten-free beers (have not tried them all), but prefer wine (vodka too which is distilled and not brewed like beer)! Nothing, I repeat, nothing is worth getting glutened over. I wonder with the gluten free craze, if beer sales has dropped? As far as your friend, he might not be experiencing any symptoms. Ask when he last had his antibodies tested.
  9. The "Find Me Gluten Free" app (website) is helpful in finding gluten free restaurants. Read the reviews and look for those with the most reviews and are written by celiacs. Because you might not find restaurants in small towns, I would strongly recommend purchasing a good ice chest (like an Igloo 5 day cooler) at a Walmart or Target Discount store upon arrival. Ice can be obtained for free at all hotels/motels. This cooler will keep in a hot car. Purchase food from a grocery store, plastic ware and paper goods. Heat some foods in the microwave. Stores like Sprouts, WholeFoods and even Target (and many grocery stores) have frozen dinners that are gluten free. Easy to heat in a microwave in a pinch. Purchase a smaller cooler for hikes and picnics. Hit a dollar store for any cheap storage items and cookware if you find motels with small kitchens. Purchase a small tent and some sleeping bags at Walmart or Target and you can camp at some fabulous state campgrounds along the way. Showers are available. There is nothing like hearing the surf and sleeping outside. Donate to charity on your way back to the airport. You can get a tent, sleeping bags, pads and pillows for less than $150 for two people. Same cost as one night at a hotel. Reservations are not always necessary as people tend to cancel at the last minute. Besides, you can always find a motel. Just something to consider. I am assuming you are traveling by car and not on bike! Have fun!
  10. I was diagnosed when I went for a routine colonoscopy (yep, I was over 50 years old). During my GI consult he suggested celiac testing because I was anemic. I have always been anemic due to Thalassemia (genetic anemia) but my hemoglobin levels really took a dive. I was also going through menopause and my thyroid was swinging wildly from hypo to hyper. I was a wreak! Menopause and a hyper thyroid go hand-in-hand with insomnia. Like so many others, my GI sent me off with a list of gluten-free restaurants and told to go gluten free. Luckily, my hubby had been gluten-free for 12 years, so my learning curve for the diet was already short or mastered. What I did do was to stop all supplements. I only took my thyroid replacment (based on lab results) and iron (it was either that or transfusions). I focused on Whole Foods. Fed the processed gluten-free to my well-healed hubby. A good gluten-free diet and patience is required to heal from celiac disease. I think you are trying way too many things. Focus on just the gluten-free diet for even a few weeks. Add supplements based on lab testing. Finally, consider going to a group like MA or NA (Marijuana Anonymous). They might be able to help you with coping skills. I have a family member who attends meetings and always finds them helpful. Talk to your doctor. Medication for the short term might help you deal with your anxiety. Hang in there. It does get better!
  11. Meats fall under the USDA instead of the FDA, but they follow the FDA rules for gluten. It is safe. As always, read the label! I can not eat sausage because of the casing and garlic, but I feed it to my gluten free hubby and he has no issues with it). I buy Johnsonville. I have eaten it, but like I said, garlic and casings still get to me, but it is NOT a gluten reaction. (Vomit once and I am good to go!). So good in my spaghetti sauce and we grill them all summer. We eat Hillshire Farms Polish sausage too.
  12. I am a GlutenFreeWatchdog member. I also support Consumer Reports. I like the idea of someone adocating for those with celiac disease or gluten intolerances. For now, I will stick to my primary gluten tester -- my brain. Reading labels, calling manufacturers, eating at restaurants recommended by celiacs, and posting on this forum has worked for me.
  13. Can not help you with the medications as I am allergic to ALL OTC pain drugs. Best to ask your pharmacist and call the manufacturer. This list is maintained by a pharmacist who advocates for celiacs. Still check every label yourself. Brain fog? Ask your pharmacist. It is hard to figure out things when you are not well. Just keep in mind that the gluten-free diet has a steep learning curve. That means in the beginning, you will most likely get gluten contamination either by misreading a label or eating food prepared by someone else. Each gluten exposure causes a celiac (autoimmune) flare-up that can last for days, weeks or months. Fortunately, we know the source/cause of a flare up -- gluten. My poor MIL had multiple sclerosis and she had no idea what triggered her flare-ups and therefore could not prevent them. My little niece has Crohn's, which like every other autoimmune disorder, has no known trigger. Again, seven weeks into the diet is such a short time. FInally, look for ways to simply your life and ask for help.
  14. I have visited this website. While I agree that a more whole, (less processed), gluten-free diet is probably the best way to heal in general, it is my opinion that this website is trying to sell you their product. If you have money to burn....just send some my way (my kid will be going to college soon!). 😄 Some celiacs do have a hard time healing. Some think that just going gluten free is enough (and it can be for some), but let's face it, most of us have eaten or continue to eat too much processed junk food. When you have a damaged gut, any of a product's ingredients can disagree with you. For example, xanthan gum added to breads/baked goods in place of gluten, continues to make me sick. So, I avoid gluten-free processed baked goods. Sad, but true. Hubby can eat them, but I can not. I went mostly grain free when I became diabetic a year after my celiac diagnosis. I eat a low carb, high fat diet (one that keeps my glucose meter happy). Now I feel well. The point is, that each of us must find our own way, in determining the best form of a gluten free diet. What works for one person, may not work for another. We all have unique intolerances that may be temporary or permanent. Many of us have more than one issue (besides celiac disease) going on. Even if a person does not have celiac disease, the standard American diet, is not the best diet for long-term survival. All that sugar, fast food, processed junk is making us fat and unhealthy in general. So, go eat an apple instead of gluten-free cake. 🍎 Save cake for special treats!
  15. Consider a second GI opinion. Get all your lab tests and present them. A negative blood test, yet positive biopsy could be many things: would be prudent to continue the gluten-free diet for six months or longer. Your doctor may be trying to determine if celiac disease is actually the root cause. It certainly will not harm you. Check too, if you had a complete celiac blood panel.