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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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How Bad Is Cheating On The Gluten Free Diet Periodically

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You are still missing the meaning of "ppm." The middle letter is an abbreviation of "per." Parts per million. So you don't do it per hour, per week, per year, etc.--the "per" is already there. 20 ppm is 0.002% of whatever you eat, whenever you eat it.

You can consume amounts appropriate to your caloric intake which contain less than 20 ppm (0.002%) gluten every day--several times per day--if the total intake of such foods remains appropriate to your caloric requirements.

Less is better, but finding a product that will make a label declaration (and thus risk a legal liability) less than 20 ppm is unlikely. A few companies use tests sensitive to levels as low as 5 ppm or even 3 ppm, but for legal reasons they will not make a claim on the label to that effect.

Thank you, Peter. I think I understand what you are saying.

I keep thinking of the visuals people are providing: the crumb of toast or the 1/8tsp flour and how that could fit into my day (I am trying hard to avoid those things). I guess I'm wondering how many parts per million, compared to my 1500 to 2000 calorie day, that crumb or 1/8tsp of flour would be?

That 20ppm doesn't mean much to me when I think of it in reference to say... a small smear of peanut butter on a slice of apple. If I was to divide the peanut butter smear into a million parts, and more than 20 parts of the smear had gluten, would that really cause a reaction in me? It would be such a small amount.

As I understand it, I should keep the gluten content in my total food below 20ppm. But what if that 20ppm of my total fdaily food intake comes in a concentrated dose? Say my 4 year old double dips in my gluten-free peanut butter and I get a good sized crumb of bread in my peanut butter smear on my apple; if I have had no gluten at all for a good time period, and then get a small yet concentrated dose all at once (if the crumb is more than 20ppm of my overall daily intake, or even half of my daily intake) would that make me react?

I guess I have some confusion because I don't have extreme gluten reactions, so I may not realize I am glutening myself in the future once I get settled into this diet. (I am only on week 2 and still get lots of aches and bloating and C - which has been the norm for my life - but it doesn't slow me down.) I know that no gluten is best, I'm just trying to definitively understand what is safe. Perhaps I'm thinking too black and white...

I appreciate everyone's advice.

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Actually, I'm not sure that is the " big question". I think the big question is why you are quibbling over the amount you can cheat with?

Yes!...Well said! :D I think MOST of us agree...DON'T CHEAT! Plain and simple! :lol:

Really people....do you need to be hit by a car....to learn NOT to play in the street...espesially after several people you've met ALLREADY got run over playing in the street! REALLY!...can't you just take our word for it! :rolleyes:

Its allright if you don't beleive...stick your hand in the fire and burn it good! it hurts...doesn't it...see Thats why we told you not to eat gluten...because the end result can be VERY bad....sure you don't have any bad signs right away when you smoke...but many many years later...when your lungs are black(and it will happen) you get Copd...then empaseama...then maybe cancer! but its better just to take a lung cancer victoms word for it...this is the same thing! It might take YEARS before you know the REAL damage your doing....is that one krispy kreame worth it...because if you get away with that...it might be a slice of pizza next...maybe occassional cake...you might get away with it..once your gut healed enough..you might not even feel it...but its there, nawing away at you!The people with severe reactions are actually kind of lucky, because the reaction is SO bad they don't WANT to put they're hand in the fire! its the people who think they can get away with it...because the reaction is not so bad....your the ones who end up with a blown out intestine..or worse! you should take heed to those who have been there...some of these stories scare the crap out of me!

yeah its not easy...most things worth doing..(especially health wise) arn't!

Were not perfect..I cheated yesterday...and I'm itching like crazy...in a lot of pain...and it hasn't hit my lower intestines yet...that will be fun!(I tend to get hives)so I know its not easy, but after reading some ofthese stories...I'm thinking...what the ....am I DOING! IT WASN'T/ISN'T worth it in the long run...because they're right...no matter what kind of pain I'm tollarating now (my thinking was as I put that little bit of heavenly chocolate B-Day cake in my mouth) was what the heck...I'm only hurting me...no one else! but thats not true...when your family watches you suffer...when your in the hospital with severe gut damage...when you have cancer...or SEVERAL autoimune diseses...the list goes on and EVERYONE who knows you is affected in some way...a ripple effect! :blink::) People...we don't want to steal your donuts...we just don't want to see you get hurt...like us...or people we know!

But you know the saying...you can lead a donkey to the river.....(I know its horse...but horses have more sense!) :lol:

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Wow...this is a great thread! It should be pinned, if it isn't already...

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After losing nearly 3 years of my life trying to figure out what the heck has been making me so sick all the time, and I'm still not through it yet, I don't ever want to be miserable again. Quality of life is too important. I won't take it for granted after this experience. I'm glad this post is here for anyone who is tempted to cheat. My Dr told me I would be able to cheat once in a while when I'm healed. After reading this, it's clearly just not worth it. We're so lucky to have this site.

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Hmmm..I'm still confused. I got sick for a week after drinking out of someone else's water bottle but I don't react to gluten free processed foods. if something I can't see ( cc on a water bottle) can make me sick, how come 1/8 a tsp of flour, which you would be able to see, is supposed to be something I can handle? I'm sorry, I'm honestly confused. :P

I think someone didn't calculate the 1/8 tsp of flour properly or something. A teaspoon of flour is ~2.5 grams. 1/8 of 2.5g is 0.3125grams. Flour is ~10% gluten, usually a little less, sometimes more in pastry flour. 10% of 0.3125 is 0.03125 grams, or 31.25mg of gluten. The quote was that 1/8 tsp of flour is around 10mg. 10mg of gluten, from what I've calculated, would actually be 1/24 of a tsp. of flour; still visible, but much smaller.

I could be wrong in that the % of gluten of flour is not based off of weight though.

I'm still of the opinion that villous atrophy isn't what causes many celiac symptoms though, or rather that what is enough for villous atrophy might be more than enough for, say, a headache. And villous atrophy was what was mentioned in that study(studies?), not symptoms. Afterall, people are gluten sensitive without celiac disease, and they by definition don't have villous atrophy.

And as loathe as it is to say, placebo effects exist in both good and bad directions, making us feel better and making us feel worse all because of our expectations.

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Benni: Trying to find some actual studies about single doses of gluten.

http://gut.bmj.com/content/23/3/202.full.pdf+html

30 years old and rather odd, but demonstrates intestinal changes from one dose of 30g of gluten. They find differences in permeability of molecules due to the gluten, stuff that I hadn't realized was studied 30 years ago, I thought that was all just recent.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2007.03413.x/full

This study is actually a drug trial to see if it's effective in preventing celiac disease. Nothing quite reached significant values in terms of the drug working well. For the purposes of this discussion, they used a single dose of 2.5g of amygluten 160, (not sure wat that is but it's 45% gliadin and 45% glutenin, so I figure its got to be acting like 90% gluten) and there were significant increases in interferon-y measurements in both control and placebo groups after eating the 2.5g of 'gluten' which remained elevated for 4 days until the study ended. (So they could have remained elevated for longer than 4 days.) Interferons are, from wikipedia "...proteins made and released by host cells in response to the presence of pathogens such as viruses, bacteria, parasites or tumor cells". Despite that as a group there was a significant increase in interferon, not every individual had a significant increase in it after ingesting the 'gluten'.

http://qjmed.oxfordjournals.org/content/50/1/83.short

Another older one, and it's only a case study, and I don't have access to the whole thing, but the abstract says that "The two coeliac subjects showed pronounced mucosal changes which developed a few hours after challenge and which showed the features of an Arthus-type reaction. The healthy volunteer was unaffected." I don't know how much the challenge was.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2006.02768.x/full

I believe this is exactly the sort of article you'll want to fully read Benni, although it still sort of dances around the question of how much damage a SINGLE dose of gluten causes. It's a summary of what doses are safe and which ones aren't and looks at various different studies and what they've found. What they surmize is kinda old news to us now, and has already been mentioned in other studies, that 10mg/day of gluten is safe, but 100mg/day isn't, and it was written in regards to changing the standard for what is gluten free, which is now 20ppm, not 200ppm.

If I find any other articles that may be pertinent, I'll link them too.

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I have been gluten free for a long time and I do not cheat. I was recently gluten ( my granddaughters were making pinatas and with out thinking I started to clean up the table )

I was so sick just from clearing the table of flour that I dont even want to imagine how sick I would get if I actually ingest gluten .

I do not and will not cheat. I have worked to long and to hard to become healthy to throw it away by cheating .

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Thanks for that important reminder. I live alone, so at home I'm lucky to have control of my surroundings. At work sometimes though I have to handle food, and I have to remember to wear gloves. That sneaky gluten is everywhere!

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I don't/won't ever cheat. That is not to say I won't accidentally ingest gluten but never on purpose. I truely believe if we had not figured out that I have Celiac I would have been dead within a year. I am getting so much better and the suffering I endure is just not worth a piece of cake or whatever. When I am tempted I just ask myself..... "Do you really want that piece of bread or do you want to be able to walk?" If you ask me it is a no brainer! I accidentally ingested some gluten a week ago....... It was awful! I was in so much pain I stayed in bed for 3 days, ran a fever of 103.4, I could barely walk to the bathroom. It took almost a week to recover. Not worth it for me.

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