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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? - 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

How Much "cheating" Is Allowed ?
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I'm new to this forum and newly diagnosed. I have NO digestive symptoms but understand that gluten still has a negative impact on my body - lower bone density, elevated D, etc.

Since those who are very gluten sensitive still eat out and sometimes accidentally ingest gluten, how about people like me ? Does anyone out there intentionally cheat ? How many times per month is it safe enough to get a gluten fix ?

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You are about to be bombarded!  You might want to duck behind a piece of furniture.  :lol:

 

No on purpose cheating!  You may accidentally get a little gluten at times but you should never do it on purpose.  Would you eat a little rat posion?  Or cat poop?

 

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

 

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms"

 

http://bidmc.org/Centers-and-Departments/Departments/Digestive-Disease-Center/Celiac-Center/FAQ/Gluten-and-the-Gluten-Free-Diet.aspx#cheat

 

Can I cheat on my gluten-free diet?

Unfortunately, the answer to this question is no. Even when you are sticking to a gluten-free diet, it is impossible to eat gluten-free 100% of the time. This is because there is always some level of contamination of foods, whether it is when the food is processed, when dining out, or in your own kitchen at home. Intentional or unintentional ingestion of gluten will prevent your villi from healing well. Therefore, it is very important to follow the gluten-free diet as carefully as you can to benefit from it.

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I suppose I get enough gluten through unaware cross contamination.  Adding to that, just doesn't make sence. ;)

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None. If the autoantibodies from gluten stick around for two weeks (there is a semi-self-sustaining reaction in the gut), and it takes two weeks to heal from it, one instance of contamination requires a month to get back to square one.

But we don't know that full body (not just the intestines) healing happens that quickly.

And it's likely that minor contamination will happen once in a while.

So, the answer is no intentional cheating. Gluten is something of a poison to us, and its not like us ok to ingest poison even if its only every few weeks.

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Autoimmune disease, if you haven't dealt with it prior to a Celiac dx, can be difficult to get your head around.

There are two aspects to Celiac, IMO. The obvious food related impact (what you eat, impact of eating what you shouldn't); then there's the autoimmune response....which means gluten is damaging your body: potentially all over - all tissues, all systems, even your brain.

So, if you want to lessen the wear and tear and potential life-limiting damage you must stay gluten-free. All the time. Gluten, for a celiac, can be an invisible and silent poison.

And I don't know if this other bit is good or bad; however, you probably won't remain asymptomatic after ingesting gluten. Happens to alot of us. When you get off gluten for a while your body screams loudly when you ingest it (accidentally or on purpose). So, I don't suggest purposely eating it (once you get off it) when you don't have the latitude to sit in the bathroom/bed and cry for 24 hours.

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OKAY, OKAY, I YIELD!!!!! ..... but I'm whispering to myself, if mild diabetics can cheat, why can't I ?

 

 

Its not the same thing.  A diabetic can have carbs or sugar if they adjust what they eat and thier insulin.  We can't adjust anything to make the body not attack our intestines from the presence of gluten. 

 

You might want to think of it more like rat poison - a small amount probably won't kill you.  Might make you feel sick for a day or 2.  Do you choose to eat rat poison?

 

Also, you may not heal if you keep eating gluten once a week or once a month.  It can take months to get the body to stop making the antibodies and then heal the intestines.  If your intestines are damaged, even if you don't feel them, you are not able to absorb the nutrients you need.  This leads to many things like bone loss, teeth/mouth issues, nerve damage/ataxia, a rare cancer or two, infertility (looks like new studies show this is in male & females), etc.

 

You don't seem to want to take it seriously, but I hope you will for your health.

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You don't seem to want to take it seriously, but I hope you will for your health.

 

 

Of course I'll take it serioulsy but my new reality is less than 24 hours old so I stiil have to wrap my head around it. After all, even for loss of gluten, 2 of the natural stages are denial and bargaining ;)  

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Imagine for a minute that you have the flu.  There are millions of little viruses in your body, all smaller than anything you can imagine.  Your immune system systematically finds and wipes them out.  It can locate a single virus or organism in your body and irradicate it.  Now, think about this by logical extension: you are turning the most powerful part of your body on your own tissues, intentionally.  Even if you don't feel it happening, you are causing terrible amounts of damage and not allowing them to heal. 

 

My uncle has MS.  He has been in a wheel-chair for the past 30 years, from a single MS event.  He got tired while at work, sat down, and never stood up again.  His immune system did that to him, without pain or warning.  Auto-immune diseases are not something to screw with.  We have people on here with the celiac cancer, people with failing kidneys, people who lost all their hair. 

 

One of my coworkers was a Celiac who cheated from time to time.  He was 45 and looked 65.  I say was, because he died last year.  This stuff can kill you.

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I'm new to this forum and newly diagnosed. I have NO digestive symptoms but understand that gluten still has a negative impact on my body - lower bone density, elevated D, etc.

Since those who are very gluten sensitive still eat out and sometimes accidentally ingest gluten, how about people like me ? Does anyone out there intentionally cheat ? How many times per month is it safe enough to get a gluten fix ?

 

 

Hi Tamber,

I've only been diagnosed for about 5 weeks.  I had mild digestive symptoms, almost not enough to consider the agony of removing gluten from my diet.  I am a bread lover.  I've been gluten free for about 5 weeks, accidentially ingesting gluten once about 2 weeks ago.  Having been off of gluten when I ingested it, I noticed a difference within an hour of eating.  My stomach was cramping and bloated, etc.  Although my digestive symptoms were not major, I had a miriad of other minor health issues that improved, such as anemia, excema, migranes, etc.  You may find that although you do not have any major symptoms, you still may not be aware of some minor issues that could be resolved and improve the quality of your life.  It's not a matter of "if" you have major problems if left untreated, but "when".  If you continue to eat gluten, even with only minor or no symptoms and you are a diagnosed Celiac patient, then you will continue to damage your intestines, have decreased nutrient absorbtion and lower your immune system.  You will be at greater risk for cancer, and other autoimmune related complications.  My suggestion would be to learn to live with it the best you can and learn how to eat out without cheating.  My family and I eat out more than 1xweek.  We go to places where I know I can eat something safe.  I read their websites, I call the specific location, or I ask to speak to someone who is knowledgable about the menu.  Once you have 4 or 5 places you are comfortable with, you won't feel so deprived.  For quick places, Chic-fil-a as a dedicated french fryer for gluten free fries, grilled chicken and a salad (no croutons).   Five Guys offers a gluten free burger that they wrap in lettuce and also has a decicated french fryer. I love 5 Guys because for no extra $, they will grill mushrooms, onions, etc. w/your burger and wrap it all in lettuce. My local Wendy's has some Gluten free options too.  Check with each local spot you like for what they have.  My local Mexican Food joint uses gluten free corn tortillas.  I've confirmed with them that their carnitas and beans are also Gluten free.  I get the carnitas meal twice a month on corn tortillas, with beans and cheese.  (I skip the rice, since they said they cannot confirm it is gluten free and have them give me double beans or a side salad instead).  I can go to a steak house and get filet, baked potato and salad (all gluten free), just watch for certain dressings, all croutons and some other extras that could blow it.  If in doubt, I do not eat it.  Think of the items you already eat, like potatoes and corn that are naturally gluten free and get creative with those, rather than just cutting out gluten.  I have gotten crazy with corn tortillas and potatoes, making wraps, stuffed potatoes, etc.  I try not to complicate dinner too.  I made fried chicken with rice flour this week and it was wonderful.  Easy swap and I did not feel deprived.  Good Luck.  You will have to take it seriously and take the plunge without cheating in order to avoid more serious complications in the future. 

I'm new to this forum and newly diagnosed. I have NO digestive symptoms but understand that gluten still has a negative impact on my body - lower bone density, elevated D, etc.

Since those who are very gluten sensitive still eat out and sometimes accidentally ingest gluten, how about people like me ? Does anyone out there intentionally cheat ? How many times per month is it safe enough to get a gluten fix ?

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I hope if you stay tempted to cheat that your body will give you some loud protests.  I mean it is for your own good.  I am glad for my body letting me know when I accidentally blow it. 

 

I just want to say too that it is understandable to want gluten back.  It seems so sudden and final to you, perhaps.  Many of us had grief at first.  Hopefully you will discover that you really do feel better gluten free.  You need some time, though.

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Of course I'll take it serioulsy but my new reality is less than 24 hours old so I stiil have to wrap my head around it. After all, even for loss of gluten, 2 of the natural stages are denial and bargaining ;)  

Hugs to you! I'm new to this forum, but not to auto-immune problems. I'm not sure how old you are, but if I could go back in time and know the things I know now....I'm pretty sure my overall health would be much much better. As it is now, I have to allocate my spoons (if you don't know what this is, read The Spoon Theory here:  http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ . I've just recently started a gluten free diet, and I truly hope that it will make me feel better. Will I miss eating certain foods? Yep, but if I can feel anything approaching normal, it is worth it and more. I have 2 daughters and I know I'm the best mom I can be, but I also know that they are missing out on things because of my health. My poor health is a huge factor in the dissentigration of my marriage. So if I could go back in time and tell my younger self...do this, try that, be aware of these things, this will happen if you don't...it makes me want to cry just thinking about it. So take a bit of time to adjust to your new reality...do alot of research and become informed. You are your own best advocate! Scream and rail at the universe (if you aren't there yet, you will be) and then find acceptance. Do what you need to do to keep further damage from happening to your body. Consider it a gift from God that you are given this chance to prevent all the damage you could have done unknowingly. You will have a much happier life if you are healthy. There will be so many things you won't have to miss out on!

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Depends how sick you want to get later in life and which auto immune system you want to live with....during your by then shortened life span  :D. That's the correct answer to your question. I.e if your smart you'll never touch it again and be thankful you got it in time. Once your body starts destroying itself it's no joke any more and you'll see on this forum a VERY abnormal percentage of people have auto immune conditions. Play with gluten as a known celiac and you'll get messed up big time eventually... but you'll never know which grain of wheat is one too many so any is too many.

 

I've never drank or smoked or done anything unhealthy in my life other than eat bread... and I've got the Kidneys of a 70 year old (I'm 40) I've got a lymph node the size of a fist at times in my neck. I didn't cheat on the gluten once I knew I just didn't know for a long time, you got lucky. Trust me on this, don't cheat.

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I am guessing you got the message, so I won't add to the advice above :)

Welcome to the board, sorry you need to be here. Hopefully you will find improvements on the gluten-free diet. It does take a while to get your head round it, but there are plenty of folks here who have traveled the road and are happy to help. Look at the 101 pinned thread for starters, and ask lots of questions.

We are here for rants too :). Some people get gluten withdrawal, it will pass. Come and talk when your head wants to explode from reading labels...

Good luck

Mw

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Thank you all for making things crystal clear. And KarenG, you were right; I'm still ducking behind that piece of furniture.

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Its not the same thing.  A diabetic can have carbs or sugar if they adjust what they eat and thier insulin.  We can't adjust anything to make the body not attack our intestines from the presence of gluten. 

 

You might want to think of it more like rat poison - a small amount probably won't kill you.  Might make you feel sick for a day or 2.  Do you choose to eat rat poison?

 

Also, you may not heal if you keep eating gluten once a week or once a month.  It can take months to get the body to stop making the antibodies and then heal the intestines.  If your intestines are damaged, even if you don't feel them, you are not able to absorb the nutrients you need.  This leads to many things like bone loss, teeth/mouth issues, nerve damage/ataxia, a rare cancer or two, infertility (looks like new studies show this is in male & females), etc.

 

You don't seem to want to take it seriously, but I hope you will for your health.

Actually, diabetics should never cheat.  My brother is a Type 1 and he has cheated his whole life by playing games with his insulin.  As a result, his kidneys are shot and he's a mess in every way.  The whole notion that it's OK for diabetics to cheat is ridiculous. You still damage your body when you continually play with insulin levels to keep yourself from elevated sugar levels.  That's why so many get so sick later in life. 

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No problem :) we are only being harsh yet truthful because we want you to live a healthy life and this is serious stuff. Welcome :!

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Actually, diabetics should never cheat.  My brother is a Type 1 and he has cheated his whole life by playing games with his insulin.  As a result, his kidneys are shot and he's a mess in every way.  The whole notion that it's OK for diabetics to cheat is ridiculous. You still damage your body when you continually play with insulin levels to keep yourself from elevated sugar levels.  That's why so many get so sick later in life. 

I guess I mean that they can incorporate a little bit of birthday cake by adjusting what else they eat & when they eat. Not blatant " cheating". I think people see a diabetic eating a small amount of a dessert and think its " cheating".

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Welcome to the forum Tamber! :)

 

I hope that's a big couch you are hiding behind!  People love to answer these kinds of questions.

 

My own contribution is linked below:

 

How bad is cheating?
http://www.celiac.com/gluten-free/topic/94443-how-bad-is-cheating-on-the-gluten-free-diet-periodically/
 

There are many gluten-free food options now a days.  You can find gluten-free bread, cookies, cake mixes, cereals, brownies pretzels, pizza, donuts etc.  And you can make your own also.  Udi's bread is pretty good.  But mostly  I use Mission corn tortillas or Rudi's wraps.  After your eating habits adjust a bit you can find many foods that are just as good and better for you.  Many times gluten-free baked goods are in a freezer compartment at the grocery.  I suggest you go very easy on the replacement gluten-free products for a while tho.  They aren't the same and that can be disappointing.  Plus they may be more expensive, tho not always.

 

It is really good for your body to do the gluten-free diet right.  Eat whole foods like meats, veggies, nuts, fruits instead of packaged, boxed goods.  Make your meals at home and take them to work or outings.  Or take oranges or apples etc with you when you go out so you have a quick snack that you know is safe to eat.  You'll learn about safe gluten free foods faster if you do your own cooking.

 

And remember, we all started out the same way on the gluten-free diet, scratching our heads and wondering what we were going to eat now.  The infamous phrase "It gets easier after a while" is something you'll learn first hand also.  Congrats on your new gluten-free life and diet that can lead to a healthier and happier you! :)

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

What's For Breakfast Today?
http://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/

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I'm new to this forum and newly diagnosed. I have NO digestive symptoms but understand that gluten still has a negative impact on my body - lower bone density, elevated D, etc.

Since those who are very gluten sensitive still eat out and sometimes accidentally ingest gluten, how about people like me ? Does anyone out there intentionally cheat ? How many times per month is it safe enough to get a gluten fix ?

 

The correct answer if you have Celiac actually diagnosed is none, as others have posted. Having said that, plenty of people engage in unhealthy activities, knowing they are doing themselves some potential harm (e.g. smoking, alcohol, etc and I ate both ice cream and a chocolate bar last night after dinner, so who am I to talk?).

The real answer to your question is that there is no answer. Everyone is different. I am not DXed celiac, but gluten intolerant (sensitivity, or whatever the correct terminology is these days). I can eat substantial gluten (like one slice of pizza or a sandwich on regular bread) approximately 1-3 times/month without getting GI and other symptoms. However, I did have symptoms (GI and other) before I went gluten-free (unlike you I have something that I can use to gage the effects on my body).

 

edit: oh, and as an addendum I would add that if you really want to "cheat", then why not save cheating for times when you may have no other choice (like when traveling or something)? Just a thought...

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Well I to am new to this site and as well as being diagnose about a month ago. I have been suffering for years with migranes,colds,flu pnemonia and many other things it was hard for me. Im now been diagnosed and am in realy bad shape from what my dr has said bbut still am having a hard time with eating glutin free as I have 4 kids and make them dinner everyday and watch them eat the stuff I love. So after a few weeks had went by and I decided how bad would one piece of pizza realy be to me. Yes I ate it and let me tell you with in 10 minutes I was so sick and had the worst migrane I had ever had. I had to lay in bed with a bucket by the bed and couldnt even open eyes to see where I was puking at that point I realized its not worth fighting and must learn to live with what I had been dealt with. I have a friend who is very athletic who was recently diagnosed with Ms and there is no cure for that. With that being said we have a choice to live and be healthy some dont. So please just dont fight it and yes it's ok to be angry we all go thru it but please dont fight it.Good Luck to You.

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I guess I mean that they can incorporate a little bit of birthday cake by adjusting what else they eat & when they eat. Not blatant " cheating". I think people see a diabetic eating a small amount of a dessert and think its " cheating".

No...I see diabetics cheating all the time.  Donuts whenever people bring them in, dessert with lunch and loading up on sweets at holidays.  My brother was not good about his diet for years and constantly manipulated his insulin levels.  He is a health disaster now but I also think he has Celiac. However, the diet is not convenient for him and he believes whatever the AMA tells him, so he won't hear it.  His kidneys are almost gone and he will need an organ transplant at some point.

 

Personally, I think being a diabetic is much harder than being a Celiac. We don't have to keep track of carb amounts and figure out how much insulin to use.

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Welcome, Tamber!

 

It's okay, hon--c'mon out from behind the couch :lol:

We do get a little "excited" shall we say? about the "cheating question", but it's only because we care and because most of us had some serious complications and developed additional AI diseases from long undiagnosed celiac disease, so we are trying to spare you all that misery.

 

The only treatment for celiac is the gluten-free diet. So, adhere to it STRICTLY to the best of your ability and live a long, healthy life.

 

Cheers, IH

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Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
    • I know for certain gastritis  is one of the main reasons I had the scope. That and my EOE symptoms . If it wasn’t for those I would have never been diagnosed 
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