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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. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Kassia

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  1. My route to a gluten-free world started at severe acid reflux. While my doctor says it's celiac based on the blood test, my endoscopy was negative. Still, can't argue with results...including the blissful lack of acid reflux attacks. Your life sounds a bit like mine, except my doctor finally had a lightbulb moment when it came to testing for celiac. I personally call what I have non-celiac gluten intolerance, but it just doesn't matter. I know how to keep myself healthy.   Here's hoping your new doctor is more focused -- and please remember that awareness of celiac and other gluten-related syndromes is much higher than it was five years ago. This is a very good thing for people like us.
  2. This is hard because every family is different. That being said: plain mashed potatoes are gluten-free. Turkey, especially if your husband is cooking, is gluten-free (though I suggest, if not buying a fresh turkey, to check the ingredients since frozen are often brined). Veggies: unless they're topped with something, generally safe. Basically, if you are careful and pay attention to what's being prepared, you can eat safely. One word of advice is to get to the front of the line if meals are being served buffet-style. This helps with cross-contamination issues.   You don't say if you'll be traveling or not. If not, volunteer for a side dish as well. And, absolutely, positively, talk to your husband's brother and others in his household so they understand the situation. I'm so sorry your family isn't supportive, but I find I firmly believe communication is key in these situations. Yes, there will be foods you can't eat, but I've been preparing gluten-free Thanksgiving meals (with the exception of a sourdough stuffing my family adores, and I'm just happy they're happy) for a while, and it's so much easier than you'd imagine.
  3. I went from barely able to drag myself out of bed exhausted to completing a marathon a year later -- that's the difference going gluten-free made in my life. Granted I walked that marathon (after the husband's knee surgery and extensive recovery, I decided my knee tendons didn't need the misery of running). Since then, I've done several half marathons with friends, and am training for another right now.   As far as training went, there were no issues with being gluten-free (except making sure I had the right kind of energy bars on hand -- there are lots of great gluten-free options). For my pre-race (or pre-long walk) carbo loading, I went with rice instead of wheat-based pasta, rice being easier to locate for out-of-town events. During the races, I made sure I had Gatorade on hand; yes, some water stations also had Gatorade, but not always. And there are some companies that hand out various gels and whatnot during the event. I avoid those because I don't find them tasty...and unless it's a brand I know well, I'm not going to try a new food mid-race.   Good luck!
  4. While I'm a fan of Udi's whole grain sandwich bread, I'm a bigger fan of rice paper wraps. Since going gluten-free, I find I don't think "bread" the way I used to. This is good because it means I'm not craving something I cannot have. But I've always been a huge lover of spring rolls (theory: my body was always guiding me toward foods that didn't want to destroy me). So, I make wraps using rice paper rounds. The rice paper has a relatively neutral flavor, and once you get used to working with them, filling and rolling goes pretty fast.    I chop protein (chicken, beef, whatever) into tiny pieces, add lightly dressed cabbage or lettuce, maybe some matchsticked veggies like carrots, some cheese like feta. Then I roll, and store with a slightly damp paper towel. Depending on how I've seasoned the ingredients, I may use a dipping sauce. Seriously, so good.   Also, rice paper wrappers are super cheap.   Note: this technique probably won't work for peanut butter and jelly. Some things must remain as traditional as possible.
  5. Honestly? Time. I find myself envious of all the great gluten-free baked goods people prepare, and I wonder they have the time to do it. These recipes seem to be labors of love, but I'm genuinely curious to know how to make the whole process of gluten-free baking fit into a full-time job and insane lifestyle. Eating gluten-free isn't hard; baking is.    At least for me.
  6.   From your doctor's perspective, not having celiac *is* good news. From your perspective, it's bad news. But based on your initial post, you are much improved on a gluten-free diet. If you take a step back, you'll realize your doctor -- who may not have the best bedside manner -- is telling you that while you may not have celiac disease, you may have non-celiac gluten intolerance. Also, while endoscopy biopsies are useful, they can only reach so far into the small intestine.   I think focusing on your health is far more important than getting a diagnosis of celiac. IBS, his next suggestion, is indicative of a problem; you still have to get to the root cause (I have a friend who was "diagnosed" with IBS, turns out she actually had Addison's disease). If eliminating gluten helps, that is fantastic. If you are still working through issues, focus on those. But please don't focus on getting the diagnosis you want because the bigger issue is getting well!
  7. It seems there are a couple of issues at play here: your desire to get diagnosed coupled with your (legitimate) worries about going back on gluten for a diagnosis; your lack of insurance because these tests can get pricey; and, finally, the skepticism of your friends. The bottom line is that you know how being gluten-free feels, and you know how you feel when you've ingested gluten. Your friends can express all the doubts they want, but they clearly don't know what happens when a person ingests gluten.   If you want to continue hanging out with this group, you're likely best served by carrying on with your diet and ignoring their doubts. As long as they're not sabotaging your diet, you can feel good about your course. If the relationship turns from skepticism to sabotage, then you have a serious problem.   Some people really get it when it comes to be gluten-free. They may not understand the nuances, but they understand that gluten makes us sick. Others simply don't or won't. There's no point in trying to convince them; if you're lucky, they'll come around when they see how well you're doing. 
  8. To me, this is the key point. After my blood test, I told my doctor I wanted the endoscopy to be certain, I wanted to know, all that. I had that procedure the day before Thanksgiving. And, from a gluten perspective, I partied on Thanksgiving. I eliminated all gluten the next day. My life changed. And my doctor -- hard to reach on the best of days -- never called with the results of my test. This told me the endoscopy didn't reveal whatever I thought I needed. When I finally saw my doctor, he pointed to my blood test, noted the challenges of the endoscopy, and focused on my positive (or, well, amazing!) turnaround since eliminating gluten.   There was, apparently, one more very expensive blood test. At that point, I knew my answer, so, contrary to what I'd told him before, I told him I was fine. And I am. Accidental gluten encounters since that day have assured me I'm not crazy, and, well, like so many others, I don't need to be labeled celiac to know I can't ingest gluten. Ever.  
  9. For what it's worth, my journey started with severe acid reflux. Not the normal kind (of course not!), it happened once a day, around the time I arrived at the office. Convenient. I went through over a year of tests, more tests, medications (prescription and OTC), more tests, food elimination (coffee, sniff), and more. Yet, I was completely useless for at least a half hour each day (attack and recovery).   Within a month of eliminating gluten from my diet, the acid reflux was largely gone. I still have the occasional attack, usually coinciding with poor eating habits or accidental glutenings. This is something I can live with, and I've reached the point in my life where I'm not dreading/looking forward to that major attack so I can get on with my life. I've done some research and acid reflux is sometimes a symptom of celiac disease -- the wide range of symptoms is sometimes what makes it a challenge to diagnose.   Oddly, I didn't miss coffee as much as I thought I would. I still drink iced tea when I'm in the mood, but haven't gone back to caffeine the way I though I would.   Here's hoping you feel better soon!
  10.   I'm a massive fan of roasted veggies (I still like steamed vegetables, of course). Roasting at about 450 with a bit of olive oil, salt, and pepper brings out all kinds of amazing flavors. They get caramelized and are sooo good. I'm convinced you haven't lived until you've had roasted Brussels sprouts. Also, when I say things like this, my mother pretends I was adopted.
  11. 3 Months

    This is fantastic. I remember the day I woke up and felt...rested. It was notable because I hadn't felt that way in, well, forever. Glad to hear you're walking and losing weight. I walked a marathon a little over a year after eliminating gluten. Couldn't have done that before.   Your de-glutening of your kitchen interests me because I took some time before I tackled the cupboards and refrigerator. Then one day, attack! I wonder if this is part of our (collective) process. Or if it's just a matter of finally discovering the energy to tackle the kitchen and all the surprises it holds for us?    Still, congratulations!
  12. I agree with those who suggest contacting the caterer in advance -- chances are they're already doing special meals for other people (diabetics, vegetarians). At least you'll be able to know what's on the menu in advance, and make plans accordingly. I attend a lot of conferences, and find my meal strategies depend on the type of event and what's being served. Since it won't be possible for you to slip out and grab a meal somewhere else, knowing what's on the menu seems like the best place to start. You can supplement with foods you've brought yourself after that.
  13. Traveling To Italy

    We were in Milan in March of this year, and I was so pleased with how easy it was to eat. Our hotel offered gluten-free products as part of their "continental" breakfast -- granted it was just breads and crackers, but coupled with yogurt and meats and cheeses, I was happy. I've never been big on breakfast foods -- clearly my body knew something way back when!   In addition to the phrase senza glutine (which means without gluten), the following phrase is commonly understood:   "Io sono celiaca(female) / celiaco (male). This is roughly pronounced as “ee-oh soh-no chee-lee-ah-kah” or “chee-lee-ah-koh”."   Pharmacies, recognized by the green crosses, have gluten-free sections, as do grocery stores. Unlike the poster above, I found the food to be as good as anything available here. One great thing we did was buy proscuitto and cheese for great gluten-free appetizers. Lots of small stores also sell fresh fruit.    Carrying cards is a great back-up, but I found saying Io sono celiaca was just as effective. Italy does have a great awareness of this issue, but I also found servers were not as aware as restaurant managers -- and that the servers always went to the managers for assistance (that could be a result of where we ate, or it could be the age of the servers).   Enjoy your trip!
  14. My advice is to take a deep breath. This is hard (this hard for people who have been gluten-free for a while). You don't need to rush to the store. Take your time, read the Newbie section, read some blogs, and discover what being gluten-free means. The advice to start with whole foods (the actual foods, not the store!) is great. Fruits and veggies are naturally gluten-free. If you can eat dairy, much of it is gluten-free. Eggs. Meats. Beans and legumes. Rice (plain, not seasoned/packaged as you don't want to get overwhelmed with labels in the beginning.   The amazing thing is there are lots and lots of foods out there that are inherently gluten-free. Yes, you have to be careful and read labels (it becomes second nature), but if you take your time, you'll figure out the grocery store isn't nearly as overwhelming as it seems. And, despite what I say in the next paragraph, you don't have to invest in a lot of expensive (compared to non-gluten-free) products to eat well.   I suspect your grocery is starting to stock more and more gluten-free products, so as you become more comfortable, you can expand your horizons. Look on the top and bottom shelves of the pasta section to see if they stock gluten-free pasta (ask if they don't!). Check the freezer for gluten-free foods like breads and even waffles. 
  15. Swimming Alone In The Gluten-Free Sea

    When I started on this journey, it was because I had intense acid reflux that made me useless for an entire half hour. No medications worked, and I never had attacks based on the so-called normal triggers. Instead, mine hit around 9:30 in the morning -- so convenient since I was at my office and people were looking to me for information. About a month, month and half, after eliminating all gluten from my diet, I realized the acid reflux attacks had completely stopped. Since then, I've had some attacks, but nothing like what I suffered.   This whole recovery thing *does* take time, and it's a different amount of time for each of us. As one thing gets better, we become more aware of other things (and how new items like medications impact us). The trick is to pay attention to your body -- and if you don't think you're getting good support from your doctor or nutritionist (who sounds like a bad fit for you), find someone who can help guide you through the process.   And remember that you're not alone.