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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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The Good Over The Bad Of Celiac

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OK, so I would by no means consider myself an optimist. Although, it is good to look at the brighter side of things sometimes. Obviously, celiac has a lot of downside to it or there wouldn't be a forum dedicated to it.

I believe good can come out of bad. So, in your minds, what good can come out of having celiac disease?? Think creatively.

I'll start.

For one thing, it is teaching me perseverance. I've realized that I need to stick to this diet whether I feel like it's working or not. I've not had gluten for about 3 weeks and am not feeling much better.

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It has taught me to listen to my body. For years I kept saying to hub, "I feel toxic" :blink: I was right -- I was in a state of toxicity.

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Persistence and intuitiveness are what it has taught me. I never gave up trying to figure out what was wrong with me even when the doctor said nothing was. Going with my gut feelings and instincts and listening to it for my self and my kids. I "knew" something was wrong, just not what. That intuition has served me well.

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Being ill for so long taught me patience and gave me more empathy. I never lost hope that the reason for my illness would be found but that last year before diagnosis came close.

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it got me out of living on the 19th floor of a dorm, which i think is great. I have also learned how to cook and fend for myself, i just went off to college in a diff state so my mom isn't here to talk to the disabilities office or the restaurant... so i have learned that I can stick up for myself and people do listen (with the exception of a few). I have learned so much that from my almost 3 years of celiac disease its amazing, i wouldn't trade it for the world (atleast today :D )

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I'm at a point right now where I don't have too much positive to say..but if I were to pick one thing..it has taught me to be my own advocate. To speak up and not be a "shy Violet". I've been horribly shy my whole life, so this is a big change for me.

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Well since ALL food is gluten free except for wheat, barley, and rye (and oats depending on the person) this has taught me to give up a lot of the processed food I was eating and to cook more. So now instead of fixing one of those boxed rice mixes I make plain rice and spice it up, or cook it with broth, or with veggies in it, or something. We're eating much better now. I'm the only gluten free person in the house but since I'm not a short-order cook (in fact, I hate to cook) I'm only cooking one meal for everyone. (If I make them pasta I just don't bother for myself and I'll eat the salad and veggie.)

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I have been gluten free since 7/2011. I was diagnosed after extensive searching for cause of burping. I have slight gastritis but the biopsy from endoscopy showed damaged villi. Blood test confirmed celiac disease. I am one who does not have any other symptoms other than burping (still not convinced it is from celiac disease). Doctor put me on Omeprazole and I have not seen improvement from burping so I've taken myself off.

The positive side of going gluten-free for me is that I am eating more natural and healthy foods. The downside is that since I don't have symptoms, I can't tell when I am getting hidden gluten. :-(

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I have learned that I am not a lazy person. I have believed all my life that I just simply wasn't as smart or as driven as everyone else but I was wrong. My food was poisoning me.

I am smart and driven and energetic. I have accomplished things in the past 6 months that I never dreamed I was capable of and I'm just getting started.

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This may sound odd but celiacs has made me a little more social. I'm painfully shy so I don't really talk a lot. However, it seems that somehow food almost always comes up in conversations and even though I don't throw out "I have celiacs" just for a conversation starter usually it does come up when people start talking about food. I admit I have gotten annoyed when people ask me a bunch of questions about it but I do find it a little bit easier to talk to people after having explained the whole thing to them.

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Also, oddly enough, celiacs has made me healthier. Not just for the obvious reason's of improved diet but after being diagnosed I got back into working out which has helped tremendously.

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I've learned a lot about nutrition and the effects of foods on the body (not just gluten). There really are so many foods that we *can* eat, and I've discovered so many that I don't miss gluteny foods at all. I cannot ever imagine ever wanting to poison myself like that ever again! Whole and natural is the way to go!

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Having this disease is (I hope) going to make me a better cook. Not there yet, though, LOL.

I used to believe that it's never to late to learn something new, but I didn't really apply it to myself too much. Now, I have energy for the first time since I was a kid and I'm realizing how much this applies to ME now. I want to learn martial arts, and piano, and all the things I wanted to do before but didn't, because even getting out of bed felt almost too hard to do.

I've been able to show my kids that even when life-altering events hit you, you can still roll with it, get back up and keep going, and use it to make things better, even. And I was able to prove to myself that I could do it.

Coping with the cooking with this disease has also done something for my kids that I never expected: they are no longer slaves to immediate gratification. They are noticeably more patient, and understand much more the concept of having to work to get what we want (like getting up early to cook food for the day, so we can go and stay at a friends for longer), and that sometimes it takes time before we can get it. It's a huge change for them.

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I don't know about good or bad, but it's just part of who I am now.

I guess a good is that it's the first diet that I've never thought of drifting from. Like, not even an option.

And that it gave us an excuse to buy new kitchen appliances. :D

I've always loved baking and it's given me an excuse to bake more (although my husband blames my increased baking on his weight gain...)

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This post hits me right in the heart. I recently hooked up with a first cousin on a social networking site. It's been 30 years since I've seen her. I told her about my gluten sensitivity and she responded that it's great that I can deal with a disease by what I eat.

She asked if I'd heard that she has pancreatic cancer and is on chemotherapy. She's a single mom and has a 20 year old son that is severely mentally retarded. Wow. I am so not into feeling sorry for myself.

I never look at the threads that ask what you miss most.

On the good side, I have learned to challenge doctors. I know more about celiac disease than a majority of them do, via this forum and a subscription to "Living Without". We're saving money from not eating out. And we're eating better by eating whole foods vs. processed. Meals are more about what we're eating vs. cooking up something quick to eat while we're watching tv, so we're having more meaningful conversations. And both of us are learning to cook things we never cooked before. Figuring it out saved my life and quality of life.

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This post hits me right in the heart. I recently hooked up with a first cousin on a social networking site. It's been 30 years since I've seen her. I told her about my gluten sensitivity and she responded that it's great that I can deal with a disease by what I eat.

She asked if I'd heard that she has pancreatic cancer and is on chemotherapy. She's a single mom and has a 20 year old son that is severely mentally retarded. Wow. I am so not into feeling sorry for myself.

I never look at the threads that ask what you miss most.

my husband has several life- long disabilities... I sooo hear what you're saying!!!!

on a lighter note, one thing I like about being gluten- free is that I get the whole box of KinniToos or KinniKritters!! And any larabars or Kind bars we buy are mine, too!! :)

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I guess I know now to 'trust my instincts' for years I had Drs basically treating me like a hypochondriac- now all those bizarre symptoms make sense and I know I'm not crazy!

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It has helped me appreciate every day we are given and to accept what I cannot change.

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Love this post!

Being celiac has given me a great many things. Good health first of all. After being sick for so many years, realizing that a diet change can make me feel good again is amazing. I also am very thankful for the early diagnosis for both of my children. They will never have to suffer like I did. And on a vain note, I've lost 30 pounds! I went from a size 12 to a size 2. I finally feel like ME again. My entire family eats SO much healthier now. I consider celiac disease a blessing in disguise. :D

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Oh my. Where to start?

I am learning to cook, which is saving me money as well as my health. No more junk food for this girl!

I feel better, I sleep better, I have more energy.

And I understand what my Mom went through! For years and years, my poor mother was plagued with health problems. Not only did her doctor think it was all in her head, but, I am ashamed to say, so did I. It seemed that every day my Mom had a DIFFERENT complaint. One day she had a sick stomach, the next day it would be a headache, the day after that it was a backache. I was convinced she was making it all up for attention. I even told my Dad once, that I thought Mom was a hypochondriac. To my Dad's credit, he told me I was wrong, and that I should have more respect for her.

Even after she was diagnosed back in the mid-eighties, I didn't believe her "other" symptoms were real. I knew she would have digestive symptoms, but I thought the headaches, joint pain, and all the rest were fake.

Now of course, it's too late to apologize to her. :(

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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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