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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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere 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 pdx.lila

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    1. pdx.lila added a topic in Gluten-Free Diet & Weight Issues   

      Anyone Want To Be Online Weight Loss Buddies?
      I'm trying to lose weight (about 20 lbs) and I'm finding it really hard to limit my portion sizes and I'd love to find some other people with celiac so we can keep each other motivated. I always feel like there are so many things I can't eat that I should really take advantage of what I can eat - which is such a silly and unhealthy idea. I like to exercise regularly (although that's somewhat limited by my fibromyalgia and rheumatoid arthritis) and I'm just hoping someone else would like to do daily emails with how we worked out and what we ate to keep each other motivated and active.

      I'm not sure it matters but I'm 24/f and in New Orleans,LA. Anyone interested?
      • 1 reply
    2. pdx.lila added a topic in Gluten-Free Diet & Weight Issues   

      Recovering Vegetarian Needs Meat Suggestions
      For the first 20 years of my life, until I was diagnosed with Celiac two years ago I was a vegetarian. Since going gluten free I have also started eating meat. I've found that I really enjoy seafood and beef but will eat chicken (and occasionally pork). I already eat a decent amount of protein - tofu & beans but I'm trying to lose 20 lbs as well as get used to eating meat regularly. Any and all recipes are welcome, especially if they are also casein/dairy free! I'd especially like spicy or really intensely flavorful recipes. Thanks!
      • 5 replies
    3. pdx.lila added a post in a topic Vegan Celiacs?   

      I was a vegetarian for my first 20 years (Because my parents are,not for any moral or health reasons) but when I went on a study abroad program and subsequently found out about my Celiac, I started eating meat. I started eating it because I find it really hard to be vegetarian with all the restrictions being gluten free puts on me (I am INCREDIBLY sensitive and can't eat anything I don't make from scratch myself). I've recently had to cut out dairy due to a lactose intolerance caused by the celiac but I've been eating chicken, some fish and other seafood. I've found that it's just a tastier whole food option because I can't eat any sauces and I haven't developed a lot that I like, a lot of meats taste good with just some olive oil & garlic, whereas I think eating tofu all the time requires more interesting sauces. Don't get me wrong, tofu is one of my favorite foods,but in my experience, it's been really hard to be vegetarian as well as gluten & dairy free.good luck to everyone!
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    4. pdx.lila added a post in a topic Trader Joe's   

      Yes,I did read that and I checked very closely on their labeling policies. There was absolutely nothing else it could have been. Some people may not react to these products,but I know that I did. I think Trader Joe's is one of the best places although I've found that I personally can't have any of their processed foods, but then again, I'm really sensitive.
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    5. pdx.lila added a topic in Gluten-Free Ingredients & Food Labeling Issues   

      Trader Joe's
      I just wanted to let you all know that I got a horrible glutening recently from a box of Trader Joe's Low Sodium Roasted Red Pepper and Tomato soup. It says it is gluten free and does not mention that it is made on equipment shared with wheat,only with nuts or soy. However,after eating it,I got very sick,as I have with quite a few other TJ's products.

      I wrote to the company asking more about their 'Gluten Free' vs. 'No Gluten Ingredients' labels. This was their response:

      "Thank you for providing this valuable feedback. We believe that quality
      is essential to good value, and that's what we are all about! We would
      like to extend our apologies for any disappointing experience you have

      Our products are labeled as 'No Gluten Ingredients', as many are made on
      equipment shared with wheat. We do not label Gluten Free unless there
      is no wheat at all in our suppliers' facilities.

      Our statements are a reaction to a large number of customers that
      requested this information on the labels. It is a very difficult
      balance for us to maintain between the information we provide and the
      actual health risk for those that suffer from food allergies. We are
      actively trying to separate manufacturing processes for all products
      where we can, however, the suppliers for many of our products are not
      large suppliers, and they do not have the ability to build separate
      facilities for each item they package or produce, or to build in the
      necessary barriers in their existing facilities.

      Our statement is voluntary, and just because another retailer or
      manufacturer doesn't have similar statements on their packaging doesn't
      mean they have separated their manufacturing processes. A set of
      universal dietary guidelines for Celiac Disease does not exist. Our
      suppliers follow Good Manufacturing Practices (GMP's) to segregate
      ingredients on shared equipment and/or in the facility. Individuals
      have different levels of sensitivity, so remember the motto: When in
      doubt, leave it out.

      We have forwarded your comments to the appropriate departments. We will
      continue to monitor this product for future trends, as this does appear
      to be an isolated experience. I also wanted to make sure you are aware
      of our "Product Guarantee." If you are dissatisfied with any product
      purchased in our stores, you can take it, or just the package, back for
      an exchange or full refund. At that time you can ask to fill out our
      Product Complaint Form that notifies our Quality Assurance Department of
      the incident. This way we can address and resolve the issue with our
      supplier thoroughly.

      At Trader Joe's, we are always striving to improve, and this would give
      us the opportunity to do just that."

      I took that as meaning that none of their products are really totally safe for really sensitive people(myself included). I've got glutened a few times from their products and I just wanted to share this in case anyone else was's too bad though.
      • 12 replies
    6. pdx.lila added a topic in Dermatitis Herpetiformis   

      Piercings Rejecting-related To Gluten?
      so about 2 years ago I got my nipples pierced. I never had any problems with them until about May of this year. Then they started weeping(oozing) and being extremely tender. This was about the same time I noticed my celiac symptoms getting worse. I don't usually have skin reactions although I've been noticing a reaction to my non gluten free soap lately.

      I use Aveeno soap in the shower to clean my piercings (then do salt water soaks) and this has oatmeal in it...anyone think that there's any chance this could be irritating the piercings so much that this is why they're rejecting? It'd be useful to get some advice because I haven't heard much about celiac in relation to piercings,and I want to be able to take good care of my piercings in the future.

      • 9 replies
    7. pdx.lila added a post in a topic Medications & Frustrating Pharmacists   

      The medication is metronidazole, for treating BV and it was at a Walgreens. I asked for either the manufacturer's name/number or for them to call. They called and told me that the one thing that could possibly have gluten in it is made from potato. I'm still suspicious because they were so dismissive,but I think it's safe. has anyone else had experience with this? As I understand it,this is the generic of Flagyl.

      Thanks everyone! It's always nice to hear the comforting comments and "oh yeah,I've been there". I know it's just a matter of informing them and patiently reminding them of what I need.
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    8. pdx.lila added a topic in Gluten-Free Foods, Products, Shopping & Medications   

      Medications & Frustrating Pharmacists
      Yesterday my doctor called in a prescription for me (nothing serious,just a little infection) and when I went to pick it up I asked the pharmacist to make sure the medication was gluten-free. I explained to him that I have celiac disease and even the smallest amount of gluten can be harmful. He stared at me and then said he'd look in to it. He spent about 30 minutes trying to figure it out before telling me he didn't think it had gluten in it,but that the manufacturer was closed.

      Today I called the pharmacy back and told them that I needed them to call the manufacturer again to make sure there was nothing in it that would make me sick. The pharmacist asked me what happens when I have gluten and then told me that because I didn't have an anaphylactic reaction than she didn't understand why it was such a big deal if I ingested some. I nearly started crying,I was so frustrated that she was telling me this.

      I just needed to vent,thanks everyone! Has anyone else had this problem with pharmacists? I know lots of meds don't have gluten,but it seems important to make sure any ones we take absolutely don't.
      • 10 replies
    9. pdx.lila added a post in a topic Different celiac disease Allergy And Alcohol Reactions?   

      I have to agree with what other people have said so far. Before going gluten free I could drink an entire fifth of hard alcohol in a night and be drunk,but not blacked out (keep in mind,I'm a 5'0" tall girl). Now, 3 drinks and I'm starting to feel tipsy. I haven't had an episode like you talked about in the original post,but it was good to read about it, to keep that possibility in the back of my mind.

      I've gotten so paranoid with alcohol though,I'm terrified to drink anything because I'm so sensitive. I think I'll have to explore potato vodkas.

      I actually turned 21 a few weeks before I found out I had Celiac, so I've got horrible timing...
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    10. pdx.lila added a post in a topic Please Help- Mexican Food- What Is Safe Eating Out?   

      I've found that a lot of refried beans are hard on me, most of them don't specify what spices or thickeners they use. So I usually get black beans if I go out for Mexican because it's much more likely those are just the beans themselves. I guess when I go out for Mexican I just get black beans,lettuce, onions, guacamole & salsa. It's plain but tastes great. Although I know some salsa's aren't good,fresh ones usually are.

      I had this happen a few weeks ago too,with some chips,so I feel your pain
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    11. pdx.lila added a post in a topic How Long Should A Gluten Challenge Be?   

      I'm also curious about this. I've been virtually gluten free for about a year but because I've been getting sicker I finally saw a GI doctor yesterday. He was an idiot and told me that blood tests for celiac are almost 100% accurate and that I couldn't have it because I'm not underweight. Anyway,he also told me that i didn't have to be eating gluten before I had an endoscopy. I'd still like to find out if it's all celiac (I have very clear symptoms but blood tests are negative) but I'm terrified of eating gluten again-I feel completely unable to function. I have a endoscopy schedule for next week and I'm wondering if I ate gluten between now and then if that would be enough to show up on a biopsy?

      I'm not sure if it's worth it to fill like poop for the next 3-4 weeks because I eat gluten for a week just to find out if I for sure have Celiac...I figure if something else shows up in the biopsy,then we can look in to that,but if nothing shows up I'll assume it's celiac...
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    12. pdx.lila added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      I Think It's Celiac...
      Since I can remember I have had stomach aches after eating and I get sick all the time. I'm often too tired to do things and feel like I need so much more rest than a normal 21 year old. After have 3 serious illnesses in the last year (kidney infections, what they think was internal hives and bad pneumonia) I went to see a naturopath. She suggested I try getting off wheat and dairy for a while and see if I felt better. I felt so much better! I finally reintroduced dairy again (I'm a vegetarian and thought I needed the extra calcium/protein) and still felt much better without the wheat. I wasn't as tired and didn't get stomach pain after eating.

      In January I went to South Africa for 4 months and while I was there my symptoms got worse. Not only could I not eat wheat,but I couldn't eat anything with gluten. I tried to cut it out,but in South Africa that's pretty hard. Now I'm back home and I'm so frustrated with my body. It feels like gluten is sneaking in to everything I eat. I'm not at all underweight,in fact I've gained almost 25 pounds in the last year alone, but I get horrible stomach pains after eating gluten, my body tenses up to the point where I feel like I have lead in my veins and can't move, I feel fidgity and like I have to move but I don't have the energy to do it, my kidneys are in intense pain and I feel extremely dehydrated and my brain feels like it's in a fog. I've had joint pain and muscle cramps since I hit puberty but nobody really knew why. I've been on a gluten-free diet(as much as possible) for about 7 months straight now and when I can really stick to it,I don't get muscle cramps, my bones don't hurt and my legs rarely fall asleep from sitting cross legged on the floor.

      Does this sound like celiac to folks? I've been to two doctors who are both convinced I have celiac,but the blood tests have both come out negative(they did full workups, including kidney & liver functions & iron tests). I'm going to see a gastroenterologist next week but I feel like I'm getting more and more sensitive. I almost want it to be celiac so I can know why I've had all these unexplainable problems my whole life. It's a bit terrifying because when I accidently have miniscule amounts of gluten it feels like my entire body - internal organs & muscles - decide to give up and stop working.

      Sorry this is so long,I'm so upset and frustrated that I had to get it out. Nobody I know has celiac or anything like it and even my Nurse Practitioner mom is a bit skeptical that all my problems are related. My partner is wonderful about it - he's learned all the different forms of gluten and checks all foods for me, he speaks up when we go to friends if I'm too sick or don't know them, and he does his best to make me feel better when I am glutinized. But I want to get back to life when I'm not too tired or in too much pain to function. I'm so glad to have found this board,it's been really helpful to read about other people in the same boat as I am.
      • 2 replies

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