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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 FREE Celiac.com 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do You Ever Cheat On Your Gluten Free Diet?
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43 posts in this topic

I was just told today that my biopsies were positive. I'm trying to think about my life without a lot of my favorite foods. I know i'm going to go gluten free but seriously, is it a HUGE deal if i cheat once in awhile? Like even once a month on a favorite meal out, etc. I have no symptoms by the way. Thanks

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No, never. I have had accidents where I ate something by mistake (and paid a price), but I would never intentionally eat something that I knew contained gluten. I am into my thirteenth year gluten-free.

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This is a HUGE deal. Don't do it!!! Even if you don't have symptoms your internal organs get damaged whenever you consume gluten. It is difficult to start this diet but it becomes easier with time.

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NO WAY!!!! I'd never intentionally cheat - its the same thing as going into your garage, grabbing a bottle of antifreeze, taking a sip and saying "ok, a little bit won't hurt!" Please believe me when I say that when you are gluten free for a while and then accidentally get glutened, you will NEVER consider cheating purposely again. Is a cookie or pizza worth D, vomiting, migraines, fatigue, rashes, mood swings, and uncontrollable pain? (I dont know what your symptoms are, I'm just throwing out a few) Plus if you continue to cheat you put yourself at risk for other autoimmune diseases and issues with other organs.

I'm sorry if this sounds harsh, but nothing is worth doing that to your body. There are plenty of gluten free replacement foods that taste just the same, if not better, than "regular" foods. There are two dedicated gluten free bakeries near my house that make cookies, cakes, pizzas, raviolis, breads, etc that are to DIE for. In fact, my family now eats this bakery's goodies because they are that good. Your favorite foods in gluten free versions are out there, you just have to look for them.

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P.S. I never had symptoms before my diagnosis either, but now, once I accidentally eat something I shouldn't, I get pretty bad reactions. You do become more sensitive over time. You may not have reactions to gluten now, but I can almost guarantee that you will. Just some "food for thought!" (No pun intended :) )

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Yes, three times and i paid for it with chronic "C". It was shortly after my dx as well.

Believe it or not a year and a half later, i really really do not miss those foods as i have found substitutes for it.

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Welcome!

Definitely HUGE deal with HAZARDOUS consequences.

I can understand if you have no symptoms why you might ask why not? just a little? once in a while? In fact I remember thinking similar thoughts at diagnosis even though my symptoms were very bad. After the initial shock wore off and I read as much as I could - I became very happy that all I had to do to regain health was remove gluten - well it was much more difficult than that for me - I had gone undiagnosed for 43 years so the damage was severe - three and half years later I still have major health problems caused by undiagnosed Celiac Disease.

When I hear "no symptoms" I think - oh how fortunate that person was to be diagnosed before this disease caused havoc to their health, family and life. I sure hope they can remain gluten-free to prevent the health problems I have experienced.

Even the smallest amount of gluten will continue to cause the auto-immune reaction taking place in your body. If you keep ingesting gluten, damage and symptoms will continue and likely get much worse.

The learning curve is tough, but once the transition is made it really is not hard to live gluten-free and the benefit of good health is priceless.

During these first few months should you find yourself ready to cheat - post your frustration here - there are plenty of us here that can understand every one of the frustrations that you will experience in the coming days.

It is very likely that you will begin having reactions to accidental ingestion of gluten at some point in these first few weeks/months. Once gluten is removed the body often reacts strongly to small mistakes. These reactions usually help reinforce the need to be as close to 100% gluten-free as you can.

You may also discover that you do have some minor symptoms that you never would have connected to gluten improve once it is removed. Depending on how long you have had Celiac Disease you may have dismissed minor aches, pains or digestive problems because they were just a little ache here, a little indigestion there - nothing that really slowed you down or seemed to be something to worry about.

Read as much as you can, ask questions and commit to removing gluten for your health and future.

Good Luck to you :)

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I was just told today that my biopsies were positive. I'm trying to think about my life without a lot of my favorite foods. I know i'm going to go gluten free but seriously, is it a HUGE deal if i cheat once in awhile? Like even once a month on a favorite meal out, etc. I have no symptoms by the way. Thanks

Like the others, nope.

I do get symptoms, but I was never super sick.

But there are SOOOOOO many other very tasty things to eat, why would I bother getting sick? Even when I have to exclude dairy, there are still SOOOO many other things to eat!

I cook for friends fairly often, and no one - ever - has complained about the lack of choices or the taste. They might comment that I made more options than they have room in their belly to try. (I have gotten momentary disappointment when they learn that I don't have parmesean cheese for pasta. :P )

Finding all the other options takes time. Time and an openness to trying. But I've been doing this for... 10 years? So it's gotten a lot easier. :)

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In the beginning, yes. 3 times, because like you, I didn't have a noticeable reaction.

First time, about 3 mos in, was a Twix bar. Felt bad because I had never stuck to a diet 100% for 3 mos before.

2nd time, about 3 weeks later, Hardees crispy chicken sandwich. It wasn't even that good. Didn't get sick exactly, but had some "urgency". Felt like a total failure though as I was hiding my cheating from my celiac kids.

3rd time, about 6 mos in. Egg rolls and crab rangoons. Stomach got really hard within a half hour. An hour later I knew I was in trouble. Spent the next several hours puking my guts out and in total agony.

Lesson learned.

Now, a year and a half after dx, even tiny amounts of cross contaminaton make me feel awfully yucky.

It is hard adjusting to the diet- sometimes when you are new, it is easy to give in. But don't. You will pay, one way or another.

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Actually, to be honest, it has never even occurred to me to do it. Must be because gluteny stuff just does not look good to me any more.

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Never. Not even tempted.

But I was slowly dying from undiagnosed celiac and malabsorption and suffered major health consequences as a result. It has taken me nearly 2 years to get some relief from the pain I live in and get my brain function back and try to reverse the neurological symptoms and I am still rehabbing my deeply impacted muscles.

I think of Gluten as poison. Anthrax. Kryptonite.

I have often thought how easy it would be for my friends who do not suffer immediate GI or neurological symptoms to cheat, but they tell me they keep in mind that the damage occurs whether you "feel it" or not.

I think you should read up on how this disease process affects the whole body (and how celiac disease is related to other autoimmune diseases and cancer) so you know why cheating is never a good idea, hon.

Best wishes and Welcome to the club! ;)

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I was just told today that my biopsies were positive. I'm trying to think about my life without a lot of my favorite foods. I know i'm going to go gluten free but seriously, is it a HUGE deal if i cheat once in awhile? Like even once a month on a favorite meal out, etc. I have no symptoms by the way. Thanks

I have to ask . . . if you had no symptoms, why were you scoped? Something must have been going on :huh:

I think you've got the gist of how people feel about cheating from the previous posts. I'd like to give you some advice on how to NOT cheat.

You're better off planning these things ahead of time as I think cheating, in general, comes from when we are not prepared for a situation we find ourselves in.

What's your favorite gluten meal? What's your favorite gluten treat? I suggest that you ask here and you will get plenty of help with recipes and substitutions. Start working on a good replacement before you are really hankerin' for that chocolate chip cookie. Come here for recommendations on where to eat out . . . our family favorite is PF Changs. When somebody brings donuts to work . . . treat yourself to a snickers bar. Research ahead of time what you can get at a few local places (Wendy's frostys are gluten free).

It's all about planning ahead and not feeling deprived.

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Hi,

Welcome to the forum. Some people do have actual withdrawals symptoms form gluten. If you keep eating gluten occasionally you will just keep that withdrawal issue alive. It's kind of like smoking, if you quit, you quit, because doing just one is not easy. The other thing is the autoimmune process starts and stops, but it starts fast and stops slowly. So you might eat some gluten one day and get a reaction quickly, but the immune process isn't going to stop for a couple weeks at least. So your once a month cheat idea ends up keeping the immune process going most of the time. The goal of the gluten-free diet is to stop the autoimmune process so the damage to the body stops and we can heal our guts and bodies. And just plain feel better too.

After you have done the gluten-free diet awhile you can learn to eat better, healthier foods and not miss the processed crap loaded with gluten anymore. It's just an adjustment and learning a new way of eating, anyone can do it if they want to. People that don't do it pay a price. And it is mighty steep sometimes.

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Anything above 10 milligrams (mg) of gluten (per day) is unsafe.

Cheating once a month with a piece of cake is far too often if you want to stay healthy.

You will almost certainly encounter gluten sometime in the future, due to it's abundance in our food supply. Since you're new to the diet, you will need time to heal and yes you will probably consume gluten when you least expect (or even realise) it.

Also, realise that if you have deliberately consumed gluten at any point in time within the last three months, you are not Gluten Free.

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No I haven't. I was one who got stomachaches from gluten, but my doctor dismissed it when I was a child and I trusted him and didn't revisit that issue. 30 odd years later or eating gluten, I now have 2 or 3 other autoimmune diseases which I might not have developed if I hadn't kept my body inflamed by eating gluten. I want to heal so I don't end up with another AI like MS or diabetes... It's not worth it... and I can still eat sooooo many things!

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I don't want to. I think if you got my symptoms, you might not want to, either.

I did deliberately risk a cross contaminated meal once, years ago, on a trip, after, in spite of my best efforts, getting hit from the restaurant meal the night before, which was a plain steak and potato :angry: I thought, since I'm going to be reacting anyway, and be stuck with this headachey fuzzy brain and my eyes crossing, might as well get something out of this, and the funny part was, I didn't react poorly to it, because it turns out that dish is made with rice flour, which explains why I had eaten it in the past before I went gluten free, and it didn't bother me, but I couldn't quite figure it out. But I really paid attention to it this time (how it tasted) so I could then try and duplicate it if I ever wanted to eat it again, and get the flavor right. I was really surprised when I researched the sauce, that it was also gluten free because it is a very simple mayonnaise mixed with honey. That whole trip was just like an adventure in gluten- hell land anyway, and it taught me to not depend on others to do basic research on what is going to be available re: "food," because my spouse had stayed in the same area a few years back, and he said it should be okay, and to use room service if I had to, but when I got there the hotel concierge gives us a list of recommended restaurants and tells us to take cabs because it is not safe to just walk around :blink:. Oh, just great. So on that day, after the first day's meal in the restaurant where I was pretty sure the (Russian emigre) waitress had no earthly clue as to what I meant, I was really relieved that someone who was familiar with the area volunteered to take some of us to another (ethnic) restaurant where she knew the owners and she could translate. Heck, maybe that's why I didn't get hit. :)

My only other bad restaurant glutening was ordering off a gluten free menu with a nationally known chain, with another waitress whom I could tell was sort of new, and it was steak and potato again. :huh:

Now that I am nine years into this, I am more sensitive. I don't feel good eating a lot of carbohydrates or sugars anyway, and there is always another alternative food that I can make to eat, that my husband can make (he likes to grill meat) or find to eat, that I don't feel these intense cravings to stuff myself with lots of breads or cereals.

Some doctors will tell patients on other types of diets to go ahead and have a cheat once in a while, as a sort of reverse psychology thing that lets them know they don't have to be perfect, so as to have a better overall chance of success. I know that my mother was told this when she had to go on a sugar free diet, and she didn't do this very often (cheating) as a result. But, it's different that you cannot medically compensate with some extra pills or insulin, when you are setting off an auto immune reaction by ingesting gluten. There is just no way that eating something with gluten in it is going to be worth setting off an arthritis flare, besides the neurological symptoms.

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Thank you so much for all your replies!! I really needed to hear your opinions about it. That helped thanks! For whoever it was that asked about my symptoms, i just have bloating/gas. I had my doctor do the blood tests which were positive and that lead to the endoscopy.

I'm an RN so i do realize how important it is to stick to the diet. It's just so hard to imagine a couple little bites can cause such a response in your body!! Crazy!

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Karinp, I think once you start doing research (especially as an RN) you'll see lots of other reasons why not to cheat. As others mentioned, it's hard enough to keep gluten out of your diet even being really vigilant about it (things I never imagined to be iffy: imitation crab meat, tea bags!), nevermind the issue of CC, which is a big one.

I also don't have noticeable symptoms. I react more strongly to dairy and soy. But the chronic alternating C/D that I used to have has eased considerably, and my gas and bloating have gotten much better.

With Celiac disease, your chances of developing several types of cancers, as well as other autoimmune disorders, is significantly (in some cases exponentially) higher if left untreated, which means if you continue to consume gluten. For me, with cancern running in my family and with a job that involves a fair amount of sun exposure, it's worth it to me to reduce my risk of cancer as much as possible if for no other reason! (Melanoma is included in the list of increased incidence.)

Read up - as soon as you learn more about what damage is being done and what will or may happen if you continue to consume gluten, I think you'll be less likely to cheat.

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Karinp, I think once you start doing research (especially as an RN) you'll see lots of other reasons why not to cheat. As others mentioned, it's hard enough to keep gluten out of your diet even being really vigilant about it (things I never imagined to be iffy: imitation crab meat, tea bags!), nevermind the issue of CC, which is a big one.

No need to worry about tea bags. That is just one of those myths that seems to go around the internet. I think the imitation crab meat is a real concern but in the US, they must label the wheat added.

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As others have said, after being gluten free for a while you might not have any gluten cravings, or any desire to cheat. At first I had cravings, and the smell of cookies or bread baking drove me insane. But now that same smell does nothing for me, with no mouth watering and no desire to chow down. Going gluten free is like Pavlov's bell in reverse - you become conditioned to not want it anymore.

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A few kinds of TEA in the tea bags might have gluten in the flavorings, but the bags are okay.... check the manufacturer's FAQ on flavored teas. Wouldn't go near fake crabmeat :blink: . Some cigarette rolling papers and some brands of charcoal and kitty litter having wheat/gluten in them as binders, as well as some types of drywall, were the biggest surprises I've seen on commonly used items which can have gluten. Most annoying reactions I've had weren't mine, it was when I purchased an expensive brand of dog food that was prominently labeled 'gluten free' and the manufacturer changed formulas but still had the same label pretty much until you read the fine print, when my spouse purchased the next bag, it was not gluten free because it now had cc'd oats, and the (very allergic) dog got really, really sick and we had a vet bill because besides throwing up and D, he licked himself a huge, nasty hotspot on his skin. :angry:

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No need to worry about tea bags. That is just one of those myths that seems to go around the internet. I think the imitation crab meat is a real concern but in the US, they must label the wheat added.

Good to know! I definitely saw some posts about specific brands and even specific flavors being gluten-free and not, but I'll just always check with manufacturers to be sure. Lots of them are just stapled shut anyway, of course!

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I found the first 3 months the hardest because I got a headache every time I tried to prepare something to eat. The lifestyle adjustment was misery making. But after that it's been easy. The only time I eat gluten is on the occasion when I go out for asian food and get something that has soy sauce in it. I have found that I feel fine after but I its not good either. But like others said, I feel like gluten is so bad for me that I don't feel tempted to eat it. Hopefully you'll end up feeling the same way. It makes this a almost easy.

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I wouldn't cheat, no.

Here's a few facts that might help you understand why this would be a problem.

1. At this point in time, it will take months of absolutely no gluten to get to a healthy place for your body. Some people take around 6 months, some 12 months, some can take up to 2 years before their body is completely healed. Cheating right now, when you haven't healed is...well, I think of it like pulling off a scab from a healing cut, over and over again as it tries to heal. It's NEVER going to heal if you do that. Literally never.

2. Whenever you eat gluten - just once - it will take 1-2 weeks for your body to heal back up completely. That's once you've ALREADY healed from the years of damage your body has at the moment. If you cheated once a month, that's about 2 weeks of lower vitamins and inflammation, and then the next two weeks your body would get to try and up the vitamins again, only to be knocked down the next month with another glutening.

3. Eating gluten will cause you to be nutrient deficient. And truly, that will hurt you in ways you won't even think about. My father's joints and his spine were destroyed because of this - he was using a cane by his thirties. My skin was affected - in MY thirties, I had people asking if I wanted the Senior discounts because my skin is so aged from nutritional deficiencies.

And it can affect things that you can't plan for. Like illness: if you catch the flu right after you cheat, your body doesn't have as many resources to fight it off and you are more likely to get complications like pneumonia. The lower vitamins can affect your immune system's ability to fight off diseases and infections, period. My vitamin-deficient body reacted like it was immuno-compromised and as a result, I now have a chronic disease that will cause me problems the rest of my life.

I had no gut symptoms either, by the way, and still ended up with all these issues. Truly, cheating once in a while just sets you up for some real potential harm. :-(

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Was only diagnosed less than 2 weeks ago so this might be a rookie question :-)

If the intestines gradually heal themselves, is there a rate/amount at which gluten could IN THEORY be ingested and the NET effect is that the intestines do actually gradually heal? Although obviously if you were gluten free 100% then that healing process would be quicker.

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