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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

Staying On The Diet

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I have known about my Celiac disease for about five years, and probably had it for at least 8. I constantly had stomach aches and was exhausted. Since my diagnosis I have gone on and off the diet. I can feel the consequences but somehow I still eat gluten. Compared to most, my reactions aren't that bad. I get a bad stomach ache and feel exhausted. Is there anyone that can convince me to stay on this program? I know what may happen: It will ruin my intestine and may give me stomach cancer, I don't know if I really understand it though. Thanks.

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Anyone in your family have lupus? It killed my grandmother. I figure it could kill me, too. Anyone have rhumatoid arthritis? That would be a nasty thing to get. I've got a big ugly, red, itchy patch of eczema on my leg - another autoimmune disease - that I would have rather not gotten. Probably wouldn't have it if I had been diagnosed in time. You may have light symptoms now, but as you get older and your immune system gets more tired, you will probably have more trouble.

Is this the sort of response you were looking for?

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"Is there anyone that can convince me to stay on this program?"

No. Until you determine if your quality and length of life is more important than the taste of wheat based products, you won't stick with the diet. And I don't mean that in a rude or judgemental way; it's possible that someone finds bagels and wheat pasta so important to their life that it is worthwhile, in overall happiness over the span of their life, to deal with whatever level of symptoms they have an risk dieing earlier. I'd disagree, of course, but that wouldn't mean it wasn't true for them. ;-) (My moral philosophy is ethical egoism... this take on it comes from that.)

Some reasons to consider:

* Eating gluten when you have gluten intolerance will:

- Give you intestinal symptoms (even if they are mild)

- Give you other symptoms (mental and physical, and again they may be mild)

- Lower your quality of life, by an amount that you can't determine until you try being gluten-free for a while, and by an amount that may vary over the course of your life

- Increase your risk of dieing early

- Increase your risk of cancer and the cost, symptoms and medical treatments (many of which are uncomfortable) along with that

- Increase your risk of diabetes and the cost, symptoms and medical treatments (many of which are unpleasant) along with that

- Increase your risk of other autoimmune diseases and the cost, symptoms and medical treatments (many of which aren't fun) along with that

* Avoiding gluten, while initially difficult, is a learned skill that becomes easier with time.

* Taking full responsibility for your health and the work that goes into maintaining your health is representative of other healthy choices to be made in your life and is practice for all of those other decisions.

Those are just a couple things that come to mind.

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Hi. Glad you're here. In 1977 I learned that my sister, brother, and I were the only ones on my mother's side of the family to not have Polycystic Kidney Disease, an hereditary, terminal kidney disease. I watched my mother, grandmother, two aunts, and two cousins die of the disease. Imagine how ecstatic my sister, brother, and I were to realize that we had been given a life without the threat of this terminal illness (my mother died at 48).

Later we watched as our father died of colon cancer. Oh what we would give to have our mother and father here with us now, as we, along with our children and grandchildren experience life.

Celiac Disease has tried to bring us all down. It has caused physical illness, depression, doubts about our sanity, conflict, anger, irritation, frustration, and pain. Suffering is no stranger to us. Why would we give in to it, and cause our early demise, by eating foods which we know are poison for us? My dad always told me, "Don't be a quitter!" I'd be giving up, just quitting, if I let grains, milk, dairy, egg whites or yeast pass these ruby red lips--lips which have so much good and so much positive to share with others. I just won't do it. I will stand up and fight! I will take each day and make the most of it, giving my best. I will offer hope and inspiration to others, who may not know what to do. I will thank my Creator that He spared me from an hereditary kidney disease and colon cancer, and that He gave me the opportunity to live my dreams.

We care about you, and we really want you to join with us in this fight. Together we can change the world. We can make a difference. We can experience victory, joy, and jubilation. Yay! Go team, go! Welda

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It's really up to you and you have to decide if you want to die when you are 60 or when you are 100? I choose 100 but it is really up to you. If you want to be throwing up and being sick all the time then that is your choice, but if you want to be happy and healthy, stay on the diet.

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OK, I'll add my 2 cents' worth: When you 'cheat', whom are you cheating? Only yourself. ;) When you learn that touching a hot burner on a stove will cause pain and damage your body, do you intentionally put your hand on the hot burner? Would you 'cheat' the 'rule against touching the hot burner' if you did?

Perhaps the 'cheating' notion comes from calling the gluten free eating program a 'diet'. Most diets deprive us of foods we like and force us to eat foods we dislike. That's not necessarily so with the gluten-free approach. You can find GREAT gluten-free substitutes for many gluten containing breads, pastries, pastas, etc. You can find gluten-free brands for many condiments and gluten-free versions of many other foods. Focus on SUBSTITUTION, not deprivation.

You may discover many great foods you never tried, because you were stuck in a gluten rut. I certainly was. :( I hardly ever tried other grains or starches, because I didn't like white rice or white russet potatoes, but I ate a LOT of gluten laden breads. I seldom tried other ethnic foods. Now I love all kinds of rice, rice noodles, quinoa, amaranth, many varieties of nuts and nut butters, all kinds of beans, squashes, and any potato except russet. I love trying authentic Mexican and Thai restaurants which have lots of gluten-free choices. Even though I must avoid dairy and soy, as well as gluten, I now have soooo many more food choices, because I was forced to look beyond my old favorites. ;)


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:D i tell people that i am not on a diet--it's a way of life and gluten-free is a way of life--when you are diabetic and have to change the way you eat, its not called a diet--same thing--its the way we live, no ifs, ands, or buts--i tell people i do not have a wheat allergy, but that i can not tolerate any wheat in my system and then i add or barley, rye, and oats and they dont understand, its up to us to educate people--lets be teachers----deb :P

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;) ps---we cant look at gluten-free as a life sentence--its---WOW, I HAVE MY LIFE BACK--YEHA-------deb :D

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    • 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. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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