Cheating...interested How Many Of You Do

[Guest BellyTimber]

I know of people who have the concept of 'infringement' and that can be either sort of witting or unwitting.

Some of those people are very young. Following a steady course is a sign of growing. As a middle aged person but, at heart, on the young side, I found the way they talked about it very illuminating of where I've been at.

Like many of the people we're reading about here, I have been told celiac disease can't be diagnosed and was just told to go gluten-free.

I was invited to do a full gluten challenge, over a year after going gluten-free and my response was no way. That has since been backed up in my opinion because information is trickling out of the gastroenterologists' camp about how much and how long is entailed.

None of these people are working out a strategy for me, I had to work it out for myself.

I went out on a limb. Then I said to myself after a long time, it's time to fit in and act normal now. My stomach then reacted accordingly.

Another factor is that I can't always tell whether the thick head or the queasiness is to do with the starch or malt I ate the day before or due to something else. It takes discernment and practice.

Now let me compare and contrast the scenario of licensed premises with the scenario we are talking about here.

Far more than alcohol, the things we must avoid are in everything - I picked up a risotto the other day and guess what there is wheat in it - who ever heard of a risotto with wheat in it if you please ...

(The only answer is spend hours cooking all my own food and carting it about with me - I don't have a car)

Exceptional concentration and determination and discernment - this from a person who on my own admittance needs a lot of guidance from those around me which I don't often get (living singly).

So my friends of the 'infringement' gave me, with this concept, a very valuable tool to think about this issue. I think it's very important to be open-minded and nuanced about motivation and perhaps a word like 'cheating' doesn't reflect that too well. The most I will admit to is, when being overloaded with issues, being careless.

They also made me realise how important ownership of the diet is. The folks who handle it best are those with a strong ownership of it, whether old or young. Even if it means all of life just revolving around food.

[plantime]

Cheating is not an option for me. Accidental gluten contamination makes me very ill, why would I want to do it on purpose? My sister, on the other hand, knows how much better she feels without gluten, but she "just can't stand" going without her favorite foods, and I "just don't understand what it's like to not be able to eat whatever I want." My mom probably had celiac, she did have severe food allergies, but she ate them anyway, because she wanted to eat whatever she wanted. Not me, thank you, no. I don't like being sick, and I don't want to die the way my mom did.

[tarnalberry]

I popped back in on this thread to see how it was doing, and wanted to say "thank you" to the folks who were honest about their "yes" response. I know, with the sort of posts that have been left (including mine!), there might be some pressure to not say that you're cheating, but it actually is helpful to know the truth. It also reminds me that, despite the fact we usually assume so, we may have a number of people on the board who are not actually celiac - and avoid gluten for other reasons.

So, anyway, "Thank you"!

[Ruth UK]

I'm a real 'newbie' to the gluten-free diet - not quite two weeks in yet. But so far I've not 'slipped up' nor had the desire to do so (unless you include the 'malt extract' in the packet of cornflakes I finished off in the first two days - there's a hot debate going on about whether or not this is 'safe).

I did go to reach for a regular biscuit at Church today - and then remembered Yes, I was a little sad, mainly because I was hungry - but I so understand the consequences - not in terms of immediate symptoms - I don't know whether I would experience those or not - but in terms of long term wellness. I'm already beginning to 'get my brain back' and I want to get to the point of getting my health back - I've not had that for at least 30 years probably longer - I'm not going to jeopardise that for the sake of a few bites of anything (not even my favourite macaroni cheese - no gluten-free prepared ones available in UK).

I'm actually finding the gluten-free diet itself extraordinarily easy (probably because we can get good, fresh gluten-free bread on prescription here) - the difficult bit is the cross-contamination issues eg hubby used icecream scoop to fish icecream out on top of fruit strudel yesterday - so I declined any in case it had touched the pastry - received some rather odd looks from that one! Guess I've some way to go on the education part yet. Also eating out seems practically impossible here - extremely little awareness re gluten-free.

[SharonF]

I did, after I was first diagnosed, cheat. Because I didn't understand. I wasn't ready to give up. I thought I would just wait until after my scheduled appointment with a dietician (who, incidentally, was useless; she handed me some pieces of paper with ingredients and recipes. I could have gotten that off the internet. Plus, some of her information was WRONG).

Then I went solidly gluten-free, until I decided last Thanksgiving that it would be No Big Deal to have a little bit of stuffing, and ended up being sick all the next day.

I will admit to some carelessness, though. If a foodstuff lists allergens, and the glutens are not listed, I will eat it even without calling the company.

[skbird]

One time, about two months after going gluten free I was supposed to go out with a bunch of people for dinner. I had suggested Chinese because I usually could eat that with my other allergies, intolerances. I asked the waitress about wheat and she said stay away from the noodles, won tons. Then it dawns on me that the soy sauce isn't going to work. I tried to order something without sauce but someone else at the table had already done that (just for taste, not for special dietary needs) and the waitress had made a big deal about it being a problem. So I just got the least saucy thing I could get. And I later got sick. But that is the last time I knowingly/intentionally ate gluten.

Every so often I look at a bagel or a donut or something and think, what would happen? Even though I know, it's like I get some kind of amnesia after a while - "maybe it won't happen again" or "maybe it was something else I ate"... It's sort of like when you're standing on a tall building or the edge of a cliff and you think, "what if I just suddenly stepped over?" even though you know what will happen.

The other night I was telling a new friend (also a coworker - he was over at our house) that I have my own toaster at work and how I get teased about it all the time. He was saying, wow, you're that sensitive??? And I am this really honest person so since I have never 'knowingly reacted from having my toast in someone elses toaster, I didn't know what to say so I just paused. My husband made some comment about "yeah, it's amazing, especially when you think about all the bread she used to eat!" Then I felt even weirder about it, like I needed someone to step in for me and explain me as I didn't know what to say. Later, though, I thought of the fact that I have been proven to be genetically predisposed, also have some antibodies, and definite response in my diet, so I could have said that not all damage is readily apparant and any amount is doing me damage, even if I don't realize it. Hopefully I'll have enough wits about me next time to say that...

Stephanie

[christicrete]

I cheated once and regretted it for 2 weeks after. In fact a couple of months later I still have some undesireable side affects. I will NEVER cheat again, not even out of curiosity. I have definately learned my lesson, I did vote no because have not since and will Never again, I am tired of feeling like poo!

Christi

[jenvan]

I don't always get the 'classic' Celiac symptoms, so I could probably pull off certain types of cheating with no immediate consequences. However, when I think of cheating, which luckily I am not really tempted to do, I think of things to look forward to from continuing to eat gluten, like possible lymphoma or the myriad of others things we all know and love. (sarcasm) Needless to say, temptation flees for me after such thoughts. We'll see if I struggle more a few years from now

[luvs2eat]

After I'd been gluten-free for a year, I gobbled a thick slice of the beautiful crusty loaf of bread I'd made and always loved. The repercussions were so negiligent... that I started dreaming about scheduling cheats... maybe a Pizza Hut stuffed crust pizza one month... a Subway hoagie another month... but the planned cheats never happened.

Now, I've been gluten-free for going on 3 years... there are no cheats for me. The smallest accidental glutenizing and I'm a hurtin' cowgirl!!

[skbird]

This makes me think of when I got my EnteroLab results - my antibodies were in the high-normal range and I didn't have an obvious Celiac gene so I was frustrated and decided I was going to go out and have a Round Table Pizza to see what would happen. But somehow I convinced myself not to do that (good idea) and I still haven't had one since. I had forgotten about that until I read your post about Pizza Hut, luvs2eat.

Stephanie

[Guest BellyTimber]

At a conference I learned of a study in the UK where between 45 and 81 (or 87?) per cent compliance with the gluten-free diet was found in patients being followed up for celiac disease.

(I don't know what the figures mean)

It's thought the crucial factors are being put in touch with a support group and information generally, as well as the quality of follow-up. That then motivates the patient.

These instances were not divided up into cheats, mistakes or other types of happening ...

[burdee]

Just thought I'd add my 2 cents' worth about 'cheating' ... I think cheating depends on how painful your prediagnosis celiac symptoms were. I endured progressively more excruciating cramping pains with gas, bloating and constipation over a 10 year period while being misdiagnosed repeatedly with 'IBS'. When I FINALLY learned I could resolve and prevent that pain by simply avoiding gluten (then dairy according to Elab tests and then soy according to my symptoms), I knew I would NEVER knowingly choose gluten. I never had a soy test, but just experienced dairy like symptoms. So I did experiment a bit with how much soy I could tolerate before symptoms. However I soon discovered even a tiny bit of soy as soy lecithin as the last listed ingredient gave me painful cramps. I believe PAIN AVOIDANCE is a bigger motivator to avoid gluten than 'doing the right thing' or 'getting healthy' or whatever motivates people who don't have painful symptoms before they are diagnosed with celiac disease.

BURDEE

[cathybee]

I am new to this diease and this board...I have been gluten free for over a month now and still not feeling all that good yet...but looking forward to that day...cheat...today I say I will never again...its just not worth being sick. I love life to much to take any risk of eating something that is poision to me. I know there will be times I eat things with gluten in it that I'm not aware of but until I learn what all has gluten in it and what doesn't I will stay away from anything that does. I am still in the learning process of this diease. I am glad I found this board.

[scoutfinch]

I think cheating depends on how painful your prediagnosis celiac symptoms were. - BURDEE

I agree with Burdee. It's easier to stay gluten-free when there are noticeable rewards for doing so, and the asymptomatic celiacs don't have the "avoidance of pain" motivation for sticking to it 100%. I'll admit it - I've cheated, suffered no ill effects and wondered once again whether the gluten-free diet is worth it (and to top it off, I've recently joined Weight Watchers because of weight gain after going gluten-free and have limited my food choices even more). Instead of food being something enjoyable, it's become an enemy. I've knowingly cheated twice since going gluten-free at the first of the year, and recently ate some cereal that contained oat flour. I certainly don't envy the people who are highly sensitive and get sick, but at least they have a more concrete reason to stay gluten-free, and I admire their convictions.

I know I sound negative, but this has been a real struggle for me. I feel like I'm taking extreme measures to fix something that isn't broken, and suffering through food and weight-related stresses for no reason.

scout