Diagnosed Celiacs And Not Following The gluten-free Diet 100%?

[SaraKat]

I randomly found out that someone I know in my work industry has celiac also. I was at a conference recently and he told me he had celiac. He told me that he regularly cheats. He said sometimes he just wants a real brownie, real pizza, real pasta, etc. He said he is usually very strict- even at the conference he brought all his own food and stuff. I was surprised someone that seemed to be so strict would even consider cheating.

The only exposure I have to celiac is in the chat rooms for the most part and everyone seems very diligent about the diet. Do you think we are norm or do you think there are a lot of people out there that know they have celiac and cheat a lot?

[Emilushka]

I randomly found out that someone I know in my work industry has celiac also. I was at a conference recently and he told me he had celiac. He told me that he regularly cheats. He said sometimes he just wants a real brownie, real pizza, real pasta, etc. He said he is usually very strict- even at the conference he brought all his own food and stuff. I was surprised someone that seemed to be so strict would even consider cheating.

The only exposure I have to celiac is in the chat rooms for the most part and everyone seems very diligent about the diet. Do you think we are norm or do you think there are a lot of people out there that know they have celiac and cheat a lot?

I can't imagine how you could cheat a lot and not be very ill and miserable ... I could imagine if you felt the need to cheat once a month or something because you missed pizza, but for me personally, the dread of feeling horribly ill outweighs my (incredibly huge) love of cheese and wheat.

Then again, there is a recent study that compared people who were consistent with the diet and people who weren't, so there must be SOME people in the world who aren't consistent because they found those people for the study.

[cassP]

whoaaaaa i think thats slightly crazy.... I dont think thats the norm. I do however thinks its very common for those who know they have gluten issues but were never diagnosed or tested to cheat. I cheated for years till i grasped my results and ordered a genetic test.... And my family has not considered testing yet- partly cause most of them dont eat enough for an accurate test... But also partly because of denial- because if they got a dx- then they couldnt cheat anymore

[Skylark]

Most studies have some people who admit to cheating. They are generally not healed either. I found an interesting study on compliance and one of the helpful things is a discussion board like this. We are a self-selected group of people who are concerned about the diagnosis and seeking support in order to follow the diet well. You won't see a lot of cheating here, even though it's probably 1 in 5 or higher cheating among all celiacs.

My friends and mom are gluten intolerant but not celiac and all of them occasionally eat gluten. They don't seem to react to traces like I do, although they do react when they decide a cookie, a beer, or a slice of pizza looks good.

[kareng]

I know 2. I know a couple of others that know that gluten is an issue but eat " gluten lite". My mom told her friend when I was dxed. She told her I wouldn't go to restaurants because even a crumb was bad. My mom's friend said that was silly. She had 2 friends with celiac disease and they just take the burger off the bun.

I think we all know people with other medical conditions that require more careful eating but cheat. People taking cholesterol medicine and eating high fat foods. Diabetics not balancing their meals all the time.

I think that some of the people I know who cheat don't have completely debilitating reactions. Bloating & D can be tolerated or managed if not too bad.

[hawkgirl98]

Interesting question. My dad has been diagnosed for about 8 years and while he doesn't affirmatively "cheat" like your co-worker, he also is not nearly as careful as I am. For example, he recently visited and we went out for brunch. We both ordered egg dishes that included "breakfast potatoes." I asked how they were prepared and it turned out they were prepared on equipment also used for making pancakes & french toast. I declined getting the potatoes but my dad went ahead and got them. In general, I think there just wasn't as much information, expecially about cross-contamination, when he was diagnosed, so he isn't as careful. He also doesn't get sick from it, so he sees little incentive to be super careful.

Recently I was on a work trip and the woman sitting next to me at dinner disclosed that she was gluten-intolerant when she overheard me specially ordering my meal. Her bloodwork was positive but she didn't get the biopsy so she's not confirmed Celiac. She also told me she often cheats (in fact, she went out for pizza the next night). But she doesn't get sick when she does eat gluten, so again, there's less incentive to stick with it.

For me personally, I did not have bad symptoms before being diagnosed so it was incredibly difficult to stick to being gluten-free when I was first diagnosed. I even went out for one last night of pizza and beer after being diagnosed, hoping in part that I'd feel so miserable I wouldn't even want to eat it anymore, but instead I felt completely fine. Even now being gluten-free about 5 months, I've been accidentally glutened a couple times and the reaction has not been horrible - enough that I can tell something is wrong, but not nearly as bad as I read others report in these forums. I know I need to stick to the diet for the sake of my long-term health, but it is extremely tempting to cheat at times.

I'm guessing for people who have Celiac but do not have a strong negative reaction when they do eat gluten, it may be a lot easier to cheat.

[ksymonds84]

My two twin brother in laws have celiac. One is very very strict and the other one still drinks heinekin beer. He thinks its not so bad because its only a barley beer but we know better (he probably does too). I also caught him eating gravy on his potroast and he said, not that much on there.....He doesn't react as strong as his fraternal twin but he's doing damage all the same.

[T.H.]

I expect the percentage of cheating is pretty close to the percentage of mild reactions, ya know?

We have four diagnosed celiacs in my family.

2 of us have nasty reactions - no cheating ever.

2 of us have very mild reactions - a mild case of D, a little tummy grumbling for a day - cheat at least once every week or so.

I would not be surprised if this was the way things normally are. The perceived risk of future damage is just not enough for most people to make the effort if there is not some current problem that is severe enough to make an impact.

But then again, most people with extremely mild symptoms don't tend to check out the forums, because they don't need the extra help, yeah?

[GFinDC]

I think Hawkgirl has it right, people with no or low symptoms are more apt to cheat. They call celiac with no symptoms silent celiac. That "silent" bit doesn't mean the body isn't damaged though. We had a poster a while back who went off the diet completely for years. She ended up having an emergency colostomy operation and almost died in the emergency room. She was kind enough to come back to the forum and let us all know about it.

[modiddly16]

I used to cheat back around when I was first diagnosed, it was almost like an eating disorder, I'd go on gluten binges when I knew I didn't have anywhere to go on weekends..After each time, I didn't understand why I'd do it because the stuff didn't even taste that good to me anymore. Finally, I grew up and just realized I'd never be better (or as good as I could be) if I didn't stop.

My aunt and cousin all have undiagnosed celiac disease and refuse to educate themselves so they deny that they have the disease or a gluten intolerance. Instead, they are miserable and sick a lot and constantly complaining about struggling with their weight. I've attempted to educate them and tell them how much better they'd feel but to no avail!

[curiousgirl]

I used to cheat back around when I was first diagnosed, it was almost like an eating disorder, I'd go on gluten binges when I knew I didn't have anywhere to go on weekends..After each time, I didn't understand why I'd do it because the stuff didn't even taste that good to me anymore. Finally, I grew up and just realized I'd never be better (or as good as I could be) if I didn't stop.

My aunt and cousin all have undiagnosed celiac disease and refuse to educate themselves so they deny that they have the disease or a gluten intolerance. Instead, they are miserable and sick a lot and constantly complaining about struggling with their weight. I've attempted to educate them and tell them how much better they'd feel but to no avail!

I might be considered a silent celiac. I've been gluten free since May (with a few mishaps) and will continue to not eat anything on purpose. My symptoms are achy, tired, depressed, anxiety, blahblahblah...sometimes more severe than others. Never any D. But always constipated, even after 5 months. Been dairy free for about a week now...still no movement (sorry). I want to feel good every day

[anabananakins]

It's an interesting question. I feel, after being gluten free only 4.5 months that even thinking about cheating is dangerous. I'm the kind of person who can't stick to a diet for more than a few hours so I'm really proud of myself for being so strict. I dont' think I could do it without this forum though. It was reading the posts here that really made me realise how strict I'd have to be, and it was being gluten free rather than just gluten light that showed me the real health benefits.

I have insulin resistance and I really should eat better than I do, especially how I've been eating lately. On this trip my focus has been on gluten free, even when that's meant eating higher carb than I should. Maybe part of that is because I am free to make the choice to be gluten free (being undiagnosed) whereas I have a nagging doctor for the insulin resistance and it makes me a little rebellious? I don't know if that would be relevant to all cheaters, but those rebellious feelings might make it hard for some.

I caught up with an old friend about 6 months ago. She has celiac, the silent type. She made sure to eat a gluten free pizza, but didn't ask any questions. She mentioned a friend with celiac who doesn't follow the diet at all, she couldn't understand him, why he'd risk his health like that. There are definately non-careful people out there. I don't get it. I've been struggling to avoid cc on my trip and I've felt awful for much of the time... and that's without enjoying any gluteny food at all, no matter how tempting. I will not get on that slippery slope, no matter what!

[Robert16]

All i know is my last attack was from cc from store changing were they get there veggies it took over two weeks to start feeling better so i'am back eating nothing but chicken and fish only. So i think these people just don't care or hasn't there intolerance for gluten got that high yet.

[Darn210]

I know someone with diagnosed Celiac. It's been a couple of years, I wish I could remember what he said exactly when he found out my daughter had it but it was something like . . . Oh, wow, I've got that. Yeah, I can't have as many cookies and as much bread as everyone else (in his family) 'cause it starts to bother me . . . I think he thinks I'm nuts with how careful I am with my daughter.

I think it all has to do with the level of reaction and the amount of self-education.

[Roda]

People around me think I've become obsessed. I've had too. Even without cheating my IgG gliadin antibody is still very positive. The good news the tTg and IgA gliadin have been negative now for a year. I think it was cross contamination or low levels in seeminly safe/gluten free stuff. I encountered a lady last fall who was celiac as were two others in her family. She told me about how sick she was for so long before diagnosis and still. We went to a pot luck dinner and who was eating all the stuff? NOT ME. And she wonders why the fibro was flaring up and the other family member's behavior was off. I also had a coworker contact me about celiac and what to do. I was going over the cc issue and she said she couldn't believe I had to be that careful. She decided she wouldn't have to be. Also I heard of another person (through someone else) that regularly consumes beer. These are a few examples and I know more. I find it sad that even after confirmed diagnosis that people still want to eat the stuff. I've had a few accidents, but never intentional. After the reaction I had to certified gluten free oats, I'm scared to death of what a beer or a piece of bread would do to me. Even the barley malt from three bite size milkey way bars (accident last halloween) made me miserable for days. So not worth the pain and damage!

[cahill]

When I has first diagnosed it took me a bit to become strict with my food,,going gluten free was very overwhelming for me at the time,,

Once i became gluten free and i was feeling better I though "well it might not really effect me as much as i though"

I cheated ONCE, never,never ever again !!!My reaction was Much WORSE than i remembered.. My home is totally gluten free now,, even my dog and cats

[kitgordon]

I agree that the ones who cheat are probably mostly people with mild or no symptoms. They SHOULDN'T, of course, damage is still being done, but it's easier to ignore if you can't feel it. Like cigarette smoking when you are young and healthy, I suppose. We have 6 celiacs in our family, and the only one who cheats is an aunt who was totally asymptomatic, except for mild anemia. And then there are all the relatives I think probably have it too, and just don't want to know, which is also crazy. But, honestly, it IS hard giving up bread, beer, pasta, etc. at first. What makes it worth it is feeling better. If you weren't sick to begin with, I guess it is probably harder.

[srall]

I have one friend. The night I discovered she had celiac/gluten intolerance was at a party where we both were avoiding the food and got to talking about why. A few weeks later we were at a fourth of July party and she was eating everything. She said sometimes she cheats and just deals with the symptoms. I think if my only symptom was a little stomach discomfort I might be tempted too. But when I went off gluten and dairy and huge, grey veil lifted from my life and everything completely turned around. Last week my daughter was sick so I never made it to the grocery store. We ordered Chinese from a restaurant that usually uses wheat free soy sauce. ( I can handle a little soy). Apparently not this time. I was completely arthritic for days. It is just not worth it.

[i-geek]

My husband's uncle, a medical doctor, is a diagnosed celiac. He does things like eating just the fillings out of sandwiches. I watched him take communion at a recent church service, and he didn't have special gluten-free bread, he ate regular bread off of the plate. And because he does things like that, my in-laws don't understand cross-contamination- which is why I'm still recovering from eating at their house a week ago.

Husband's other uncle- brother of the above-mentioned uncle- was directly told by his doctor not to eat gluten. He told me this while downing a bottle of regular beer. *sigh*

I'm not diagnosed (long saga of multiple doctors refusing to take me seriously- just another stressed-out female with IBS, according to them) but doing any of that would make me sick for a week! Moral of the story- don't eat anything served by my husband's family, unless my sister-in-law or her husband prepared it (they are awesome).

[rustycat]

I have fairly mild symptoms that manifest mostly as anxiety, depression and C. Even though my blood test came back negative, I took the advice of the person I spoke to at the local celiac support group and went from gluten light to gluten free a few weeks ago.

It was the best decision I ever made. I had no idea what it felt like to not have anxiety all the time and feel emotionally stable. A couple of days ago, I was accidentally glutened and all of a sudden the anxiety was back. It was a very good reminder why I am doing this.

If I felt no improvement at all, I think it would be very difficult to be this strict about my diet.

[Marilyn R]

I know a registered dietician that cheats! She was diagnosed as a child and told me if her friends want pizza, she'll go out for pizza (because she knows she's "going to end up with a colostomy anyway"). I couldn't comment, but think she's making irrational decisions.

My mother is an RN and always cheated, but was a depression child and is very food focused. She didn't have as much information or support as we have today, and perhaps was in denial about what info was available then. (Went against her "grain"?) I don't know...

I have no desire to cheat. Ever.

There's a 3rd person I know who is 70 years old, astute, and found her first relief from IBS and severe depression in years by going gluten-free. I see her regularly. I saw "the look" (dead eyes) the other day and asked her how she was feeling. She said that she had awful stomach cramps and didn't sleep the night before. She'd stopped at Dunkin Donuts for their pumpkin donuts, because she remembered how she always loved them in the fall, and they're only available in fall.

There's still so many things we can eat, drink and be gluten-free merry with. I try to understand and stifle myself.

[bincongo]

I find all the comments interesting. I really wish they would do more endoscopy's to confirm a diagnosis. My endoscopy showed my villi were completely absent and the pictures weren't pretty. If more people had in hand proof of the diagnosis maybe they would think more seriously about it. My sister was just confirmed she has the gene for Celiac and her doctor told her to just go gluten free and not worry about the testing since the blood tests aren't real accurate. She is talking about going gluten light but not gluten free. I think it is a mistake for doctors not to go for a diagnosis.

[Emilushka]

I find all the comments interesting. I really wish they would do more endoscopy's to confirm a diagnosis. My endoscopy showed my villi were completely absent and the pictures weren't pretty. If more people had in hand proof of the diagnosis maybe they would think more seriously about it. My sister was just confirmed she has the gene for Celiac and her doctor told her to just go gluten free and not worry about the testing since the blood tests aren't real accurate. She is talking about going gluten light but not gluten free. I think it is a mistake for doctors not to go for a diagnosis.

Her doc might be hoping to spare her another month of misery by stopping gluten sooner. Also, if they're sure of the diagnosis (or reasonably sure) and stopping gluten as a trial would confirm it, then why not test for Celiac the "easy" and "old-fashioned" way by just having her eliminate it from the diet?

It strikes me as convenient to avoid the blood testing (expensive and takes FOREVER to get results back) and endoscopy (takes away a whole day of work and the biopsy results don't come back for days and days) if you can reasonably diagnose Celiac without them. The endoscopies and blood tests are very imperfect, too. Response to gluten-free diet is much more reliable.

Those are just my thoughts, though. I know how important it is to have the diagnosis in hand - I suspected I had Celiac for a while before I got the official diagnosis and it was very relieving to have that paperwork and be able to just stare at the numbers until I believed them for sure.

[SaraKat]

Her doc might be hoping to spare her another month of misery by stopping gluten sooner. Also, if they're sure of the diagnosis (or reasonably sure) and stopping gluten as a trial would confirm it, then why not test for Celiac the "easy" and "old-fashioned" way by just having her eliminate it from the diet?

It strikes me as convenient to avoid the blood testing (expensive and takes FOREVER to get results back) and endoscopy (takes away a whole day of work and the biopsy results don't come back for days and days) if you can reasonably diagnose Celiac without them. The endoscopies and blood tests are very imperfect, too. Response to gluten-free diet is much more reliable.

Those are just my thoughts, though. I know how important it is to have the diagnosis in hand - I suspected I had Celiac for a while before I got the official diagnosis and it was very relieving to have that paperwork and be able to just stare at the numbers until I believed them for sure.

This was not my case at all- my blood test was at 4PM on a Tuesday and they called me Thursday morning with the results. Also, the endoscopy was at 7am and right after it the Dr showed me the pictures of the "scalloped intestine". Sure, we had to wait a couple weeks for the path report, but he saw damage right away.

The non confirmed diagnosis is probably OK for people that are super sick and just want to stop eating gluten (but I would still want a confirmed Dx anyway), but someone like me with mild pain that I was dealing with for 9 months needed the final diagnosis.

[tarnalberry]

I find all the comments interesting. I really wish they would do more endoscopy's to confirm a diagnosis. My endoscopy showed my villi were completely absent and the pictures weren't pretty. If more people had in hand proof of the diagnosis maybe they would think more seriously about it. My sister was just confirmed she has the gene for Celiac and her doctor told her to just go gluten free and not worry about the testing since the blood tests aren't real accurate. She is talking about going gluten light but not gluten free. I think it is a mistake for doctors not to go for a diagnosis.

I'm going to take the other side of the argument and say that I think it's a mistake for people to be so short sighted that they're willing to make major sacrifices in quality (and length) of life later for a few moments of taste now. But that's true of more things than just food....