Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Do You Cheat?


kschauer

Recommended Posts

Mango04 Enthusiast

Maybe I would if I felt deprived, but there's so much gluten (and dairy and soy)-free food that I just don't feel it's necessary. I live in a bready country too where there are less gluten-free options, but there's still plenty to eat.

On another note, I could be wrong, but I don't think this thread is really representative of the general celiac population. I think this board tends to attract the strictest celiacs for some reason, and I'd venture to guess that there are many out there who do cheat occasionally.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 51
  • Created
  • Last Reply
Phyllis28 Apprentice
On another note, I could be wrong, but I don't think this thread is really representative of the general celiac population. I think this board tends to attract the strictest celiacs for some reason, and I'd venture to guess that there are many out there who do cheat occasionally.

I think Mango04 is correct. I have met several diagnosed Celiac's over the years who did not adhear to the diet. I could never comprehend why they would rather continue to eat gluten and be sick than be healthy on a gluten free diet.

Link to comment
Share on other sites
YoloGx Rookie
I am currently living in Chile, so the good subsitutes are a little harder to come by. I do buy flours and things online and have my mother ship them down here. I just get so frustrated at the change in everyday life. So much planning ahead, so much preparation for everything I can eat, never being able to pick up a pizza or eat anything a party. I do want to cheat, but the thought of increasing my risk of cancer is too much for me.

And although I know I feel so much better than I did, I still don't feel great. I still cannot concentrate to save my life. I recently had my bloodwork done and everything is in the normal ranges, including iron, and no accidental glutening showed up. But I'm falling asleep at my desk, I feel anxious and I have no energy. I don't want to do anything. If I'm going to feel like crap anyway, I'd love to eat BREAD!!

I'm not going to, but some days I would love to.

Sounds like either cross contamination or other issues--likely other things you are sensitive to. Might be worth checking into. Milk, corn are also common allergens. Leaky gut from celiac tends to create more food and chemical sensitivities. If so, it is good to take dandelion root, cleavers, yellow dock to help get rid of the brain fog and tiredness and inflammation. Marshmallow root helps soothe the intestines and heal the villi. Bromelain/papain help take down inflammation too of the villi plus elsewhere in the body plus help with digestion. Taking extra probiotics seems essential for celiac since our forebears often survived long winters on fermented reindeer milk.

Exercise also is essential for many of us to just be OK too ironically since with our over active immune system it often also kicks in over active adrenals. By doing 20 minutes of vigorous heart pumping exercise a day it helps stop the cycle--though you have to keep it up. Many with celiac are made to go catch the prey after all for instance since we are of the old primitive man model -- always on the hyper alert which if not acted on, acts against one's own body and becomes toxic--and then we become bone tired.

Bea

Link to comment
Share on other sites
Fifi Newbie

I will never cheat. It is just not worth getting sick. I have found ways to make just about anything that I culd crave gluten free so I don't need to cheat. Never want to be sick like that again EVER

Link to comment
Share on other sites
WW340 Rookie

I do not now, nor have I ever cheated.

Not only do I not want to get sick, but how can the rest of the world take you seriously if you don't take yourself seriously.

There is another employee at my office that has Celiac. She was diagnosed before me, so everyone saw that she cheated all the time and thought I was being just way too picky about my food. It was hard for me to educate everyone and keep them from contaminating my food, because she cheated all the time.

Link to comment
Share on other sites
slmprofesseur Apprentice

I don't cheat (on purpose) and never will. It was hard at first, because I didn't know which foods tasted well. After my ER visit- it will never be worth it.

Link to comment
Share on other sites
rsm Newbie

No! Never intentionally, I've been glutened by restaurants a few times when I wasn't supposed to be glutened but I have never cheated. 16 Months so far, yes pizza and cinnamon rolls call to me but I always remember the end of the story!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



mammajamma Rookie

Seems like everybody had the same thought I had, as soon as I read the title to this thread! It's the same thing I tell all the people that ask me about it... "can you cheat every once in a while?" I say "it's been so horrible when I've been accidentally glutened... that serves as all the motivation I need not to cheat." As tempting as all those foods are... it's not worth the pain, the discomfort, and the loss of a whole day!

Link to comment
Share on other sites
slmprofesseur Apprentice
Seems like everybody had the same thought I had, as soon as I read the title to this thread! It's the same thing I tell all the people that ask me about it... "can you cheat every once in a while?" I say "it's been so horrible when I've been accidentally glutened... that serves as all the motivation I need not to cheat." As tempting as all those foods are... it's not worth the pain, the discomfort, and the loss of a whole day!

Or the loss of a week! It takes me a while to recover! :(

Link to comment
Share on other sites
gfp Enthusiast
Eating out is probably the riskiest thing a celiac can do. Restaurants, delis at food markets, homes of family and friends, school cafeterias, snack days at work, etc., are all good sources of gluten. You have to ask a lot of questions and even try to read product labels, if they're available. There's a joke that illustrates the point: At a dinner party, do you know how to tell who the celiac is? It's the person in the kitchen digging through the trash to read labels.

Cross contamination is also a concern. Utensils, pots and pans, cooking surfaces, etc., may harbor crumbs or other traces of gluten. For example, you need a separate toaster that is dedicated only to gluten-free. If you dip a knife into peanut butter or jelly and spread it on bread, the knife is contaminated and must not be placed back into the jar. A fork used to stir wheat-based spaghetti must not be placed in a pot containing gluten-free spaghetti

This is the most sensible answer.....

I never knowingly ingest gluten really means nothing at all... despite the number of people saying that. (and the reason for my sig)

If you eat out you are cheating just the same, so everyone (exceptions noted) cheats... its a matter of how, how much etc. but in my opinion its like saying "Oh I never sleep with a married man/woman" and then deliberately not looking if someone has a ring...

Or to put it another way : Not eating bread or pasta is not being gluten free, its being "not eating large obvious amounts of gluten" ...

We live in a world where we can't ver 100% avoid risk... so we always have risk but its HOW we manage that risk.

Link to comment
Share on other sites
torontosue Rookie
Or the loss of a week! It takes me a while to recover! :(

Yup, at least 3 days recovery here. I guess it depends on how bad I've been glutened.

Link to comment
Share on other sites
cyberprof Enthusiast

I have never cheated. I agree with GFP that even eating out or at a family memeber's house is enough risk for me...and one that I don't take lightly.

Glutening sets me back 2-3 days of feeling crummy plus perhaps 2 weeks (like now) of mouth ulcers (from CC).

~Laura

Link to comment
Share on other sites
LadyCyclist87 Apprentice

It might be a little easier to want to cheat if when you were diagnosed, you remained asymptomatic to food containing gluten, or just had very little symptoms. The more intolerant you are when you ingest gluten, the less you probably want to cheat.

I was diagnosed with Celiac Disease all my life -- so I was only TOLD how I reacted to certain food I ate as a baby. Then, as a teenager, I grew curious as to how some food I couldn't eat tasted, and I felt no effects. However, when I started having some personal problems, cheating turned into something I used to do for control and power. Now, I'm a young adult (almost 21), and when I go to cheat, I do experience health problems -- fatigue, headache, inability to concentrate, mild stomach issues, etc. My joints in my right hand have been hurting. Worst of all, I just felt really bad about myself. The cheating became a vicious cycle, and now I'm trying to put an immediate end to it. I haven't cheated in 8 days.

So, my advice to cheating is to not even go towards that direction. It could end up being a more serious situation than you imagine, and you could cause yourself more physical damage and other health issues than you thought possible. I regret the 4.5 years that I did thoughtlessly cheat.

Link to comment
Share on other sites
darlindeb25 Collaborator
I never knowingly ingest gluten really means nothing at all... despite the number of people saying that. (and the reason for my sig)

If you eat out you are cheating just the same, so everyone (exceptions noted) cheats

This is only true of a few, not the majority! I have never cheated, not since day 1, and I never will. Of course, I do not eat out, because I do not trust others. If I eat at someone's home, I take my food.

Link to comment
Share on other sites
pnltbox27 Contributor

i wish i could say i dont cheat, but i fall off the wagon ALL the time, it has been really difficult to deal with because i dont have any horrible symptoms or side affects , unless you consider gas and loose movements not always big 'd'. its almost like ive been dealing with this for sooo long im used to it..ive actually been off the diet since thankgiving of last year and really trying to get the self control and confidence to get back on the diet...

Link to comment
Share on other sites
gfp Enthusiast
This is only true of a few, not the majority! I have never cheated, not since day 1, and I never will. Of course, I do not eat out, because I do not trust others. If I eat at someone's home, I take my food.

Deb, that was "exceptions noted" ...

Overall I just wanted to point out that people will say "I never cheat" but take risks. I have at times been able to do as you do and not eat out and the difference is amazing... all those little gripes dissapear.

The idea that we can eat out safely is a big problem for peoples experience... and the basis of so many bad facts and clinical trials.

There are many clinical trials for instance for the CODEX starch where a "gluten free" in the strict sense control group is used and the other group get 200ppm wheat starch.

Unfortunately probably 99% of the "true gluten free control group" are not actually gluten free so the clinical trial is worthless.

This then allows the clinical trails (paid for by the food industry) to say that the 200ppm wheat starch does no more damage than a group not eating it....

This is most specifically not the same as saying it does no damage but it allows the manufacturers to get away with using the 200ppm starch. This then just makes the problem of identifying 100% gluten-free controls worse!

On a similar track, the same thing happens on threads like McDo fries... people who are constantly exposed to gluten because they risk eating out etc. then say "I eat them with no problems" ... when what they mean is "I have NEVER been 100% gluten-free and I don't find the fries worse than the constant CC and hidden gluten I ingest on a daily basis"

When work allowed .. like you I went 100% gluten-free as best I could. I ate no prepared food, no risky items just home cooked meat/fish and vegetables. I didn't eat fruit you don't peel etc. etc. and would wash say a banana skin then open it then wash my hands again before eating it.

The difference in my health was amazing.... I had symptoms I didn't realise I had disappear! For those wondering its the little niggles you think are "getting older" or "everyone has that" ... and you suddenly realise "nope not everyone does and it disappears when I go 100% gluten-free"

Link to comment
Share on other sites
Mom23boys Contributor

Yes I cheat. I am not a high targeted member in the family for this diet. However with my cheats I am learning that gluten is not my friend either. With this last cheat I have pretty much convinced myself that I need to be more dedicated.

Link to comment
Share on other sites
darlindeb25 Collaborator

I tried to respond to this thread this morning, but the forum was being obnoxious, it ate my post, then just wouldn't work properly at all, so let's try again!!!

Unfortunately probably 99% of the "true gluten free control group" are not actually gluten free so the clinical trial is worthless.

This then allows the clinical trails (paid for by the food industry) to say that the 200ppm wheat starch does no more damage than a group not eating it....

This is very true, and very sad. It really does nothing for we who actually need the clinical trials to be done, and done properly.

I rarely ever buy gluten free foods, meaning, I buy natural foods, hardly anything processed, and then, the fewer the ingredients, the better. I no longer can eat grains, so I never buy cookies and crackers, nothing like that.

I too, work fulltime, yet never eat out. Some people crave eating in a restuarant, I never have. It used to be such a chore to eat out. I had to be close to the door, close to the bathrooms, away from the smokers, and then I always got sick afterwards...nothing enjoyable about it for me. Now, I just do not trust someone who isn't gluten free to fix my food, especially in a restuarant setting.

My daughter is staying with me, has been here since mid May. We cook our meat in separate pans, she uses seasoned salt and it bothers me. Well, I was feeling off, my tummy not quite right, and I couldnt figure out why. Then one day she says, "Mum, we can't share the pan lid, my seasoned salt is probably splattering on the lid, then dripping onto your meat." That had not occured to me. I would sit the lid on her pan while I flipped my meat, she doesn't use a lid. I guess, like she said, her salt was dripping onto my meat, just a tiny bit, I could not even taste it, yet it was causing a reaction in me. I stopped doing it, and now I am ok again!!!

So, for that reason alone, I do not eat out, and never want to cheat. It's an individual thing. We all come to our own dicision, one way or another. The day I went gluten free, was the last day I ever ate gluten on purpose!!!

Link to comment
Share on other sites
Jestgar Rising Star

Two very interesting points. Nicely said.

Link to comment
Share on other sites
luvs2eat Collaborator

I cheated in the beginning thru my own ignorance. Now, years later, I'm VERY careful cause the smallest amount of gluten will reward me w/ molten lava shooting out of my butt for days, in addition to feeling horrible. Who wants that???

Link to comment
Share on other sites
JNBunnie1 Community Regular
Yup, at least 3 days recovery here. I guess it depends on how bad I've been glutened.

Try 30. No cheating here.............

Link to comment
Share on other sites
Ab-Normal Rookie

I'm here for my pat on the back: friends came over for dinner last night and brought my absolute favorite french bread (and some pretty good beer) and I passed on both of them. Yay, me! :D

Link to comment
Share on other sites
tarnalberry Community Regular
On another note, I could be wrong, but I don't think this thread is really representative of the general celiac population. I think this board tends to attract the strictest celiacs for some reason, and I'd venture to guess that there are many out there who do cheat occasionally.

True. Randomized studies show the average celiac population "cheating rate" at above 50%. This board is a biased sample - it consists of people who care about their health and are out there looking for answers and ways to maintain the diet better.

Link to comment
Share on other sites
happygirl Collaborator
darlindeb25 Collaborator
On another note, I could be wrong, but I don't think this thread is really representative of the general celiac population. I think this board tends to attract the strictest celiacs for some reason, and I'd venture to guess that there are many out there who do cheat occasionally.

You are going to find this true of any disease. How many diabetics do you know that follow their diet to the letter? Their lifestyle change is not near as strict as ours, and many still can't or won't adapt to the change! How many people with heart conditions do you find not following their doctor's orders? There is always going to be a percentage that does well, average, and falls through the cracks.

The question was asked in this forum, and I truly believe we are all answering truthfully. Maybe we in the forums are the strictest celiac's. I am in several forums, and find this is true in all of them. Honestly, we all should be very strict with our lifestyles, we are the celiac's striving for the optimum health. If we don't care, who will! I come from a celiac family, none of us cheat, never have. I do believe one factor may be how sick you get if you cheat. That is a huge determining factor, in my eyes. Nothing out there is worth eating for as sick as I get. My last glutening was accidental, with a product that stated it is gluten free, and I was sick for over 3 months....it's just not worth cheating!

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,498
    • Most Online (within 30 mins)
      7,748

    Kim.cervone513
    Newest Member
    Kim.cervone513
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...