Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How Bad Is Cheating On The Gluten Free Diet Periodically


icm

Recommended Posts

nvsmom Community Regular

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.

  • 2 weeks later...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 58
  • Created
  • Last Reply
cougie23 Explorer

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:

  • 4 weeks later...
justlisa Apprentice

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

FruitEnthusiast Enthusiast

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.

cavernio Enthusiast

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.

cavernio Enthusiast

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

Open Original Shared Link

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.

Open Original Shared Link

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'.

Open Original Shared Link

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.

Open Original Shared Link

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.

cahill Collaborator

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 .


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



FruitEnthusiast Enthusiast

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!

roxieb73 Contributor

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.