For those of you who have seen the above two year old video, my apologies for being late to the party. Story of my life.
For those who have not seen it, prepare to be dumbfounded.
Anthony Demetre is a big-time chef in England and owns three London restaurants.
Anthony Demetre has celiac disease.
Anthony Demetre eats gluten-free.
So far…so good.
Ah…but here is where it gets interesting.
You see, Anthony eats gluten-free for three month stretches.
And then for two straight weeks, eats as much pizza and pasta as possible.
Then he cycles again.
Take a minute to let that one sink in.
His insane reasoning?
He can’t completely follow the gluten-free diet because then the body rejects it when you do have gluten.
No sh*t it rejects it. That’s what celiac disease is!!
Did I mention he’s a chef?
And one percent of his customers have celiac disease?
There was a big old uproar when this video first appeared and here’s Mr. Demetre’s mea culpa:
I am a coeliac and like others, I need to control my intake of gluten. My understanding of this disease is that different people have different levels of tolerance, and I am one of the “lucky” ones who can succumb to a craving for pasta or the occasional croissant, once in a blue moon. This is how I personally deal with my condition, and I now regret sharing this private information on Saturday Kitchen as a few individuals have said they found it misleading about the disease itself.
In other words…he just doesn’t get it.
Two years later…I wonder if he does now.
Holy Shiznit! This man is a total idiot and SHOULD be ashamed that he shared that personal information. How many Celiacs do you think have followed his advice and created MORE and MORE damage to their body? Oh…my…God!
This is amazing! It is interesting when beliefs trump facts. He may “believe” that eating gluten every 3 months keeps his body from rejecting it but the facts are that he is damaging his body and possibly setting himself up for some nasty diseases and consequences. Could it be denial? A death wish? Fantasy? Bad information? He doubtfully has a strong reaction to gluten because I cannot imagine he would put the poison in his body and suffer like that. It is scary for anyone with Celiac disease who might eat in any of his restaurants! How could they possibly be safe with someone with such lack of understanding and reality preparing food for them? I am glad he shared this information! I want to know who is preparing my food!
I think it’s full blown denial Holly. I hear it from other celiacs. Stuff like “I don’t need to be as careful as you because my celiac is not as bad.”
Sigh.
Seriously?? Wow. I live in fear of getting glutened, and I would NEVER willingly put it into my body for any reason. I had someone wink at me and ask with a sly grin on their face if I ever cheated. Just once. “Come on…. haven’t you ever sneaked a pretzle?” Um…. no. And this was asked when I was snacking on some delicious GF pretzles.
Looks like I picked the wrong week to quit gluten.
And don’t call me Shirley…
Strange…I was just diagnosed last August. it was a shock because I really never did, and still dont have stomach pain or much of the other symptoms others have. But I have not willingly eaten any gluten, but I know that I have been mistaken on a number of foods. I just went for my first follow up visit. it will be interesting to see if I made any progress.
Celiac is celiac, it really doesn’t matter how the individual feels, the damage it does is the SAME for everyone. None of us know for certain what additional damage celiac has wracked on the body, do these people just not consider that?
Okay, I’m going to say it (and forgive my arrogance if it’s been said before!): People who cheat on their GF lifestyle not only hurt themselves, but hurt every other celiac out there, by reinforcing the stereotype of celiac not being a serious disease. I’ve had enough of people thinking they aren’t hurting anyone other than themselves, and yeah, they’re going to start hearing about it!
I’ve always said if you’ve got celiac and you willingly cheat, then STFU. Keep your disease to yourself because you’re hurting all of us.
Perhaps a good way to think of what was happening with this chef was to compare it with smoking. When I first stopped smoking, I could pick up a cigarette again after awhile with no problem. That’s why I had to quit several times before it “took”. Then when my body began to function without nicotine and become healthy, I found that I couldn’t tolerate cigarette smoke around me, as though I had never smoked. I compare that to Celiac Disease. I didn’t have the cramps and sickness everyday that I ate gluten. But just as the cigarettes were damaging my body, the CD was doing quiet damage. I could never give blood on blood drives because I was always too anemic. I was bleeding inside without knowing it. Now I have been totally off wheat for a couple of years. If I get a little bit of wheat gluten, I get a strong reaction from my healthy body trying to cast it out. This chef never allowed his body to heal.
Holy Crap dude – I almost went into anaphylactic shock just reading about this! Horrified, totally horrified. I”d be dead or in the hospital if I pulled this stunt – no joke. This level of irresponsibility just blows my mind. Ok, I apologize if this isn’t the best analogy, but isn’t this like a type 1 diabetic announcing that he stops taking his insulin for a week – and just sticks to high glycemic foods….
Sigh…what kind of message does this send to others – especially restaurant staff?? Shortly after I was first diagnosed, I was violently poisoned by a nasty waiter (in 2004) who did not believe that this was a true medical condition. I’m getting off on a tangent here (forgive me), but I learned a very painful lesson to leave a restaurant if you’re dismissed or patronized in any way.
Although there are many well-educated chefs & restaurant staff – this guy still has a personal responsibility to educate and set an example.
“He can’t completely follow the gluten-free diet because then the body rejects it when you do have gluten.” Yes, I had to read this twice!
Yes, chef, you shouldn’t have shared this info. I agree Dude, if you feel this way, STFU. Couldn’t put it any better. When I get glutened, I am in so much pain, the wicked witch comes out 🙂 I feel that comments like this chip away at our safetly little by little.
I hear it now….”I’ll just pick the courtons off, it won’t hurt”
First of all
DONT LUMP ALL CHEFS INTO THIS STUPIDITY PLEASE. I am a GFChef, and I do not eat gluten.
Stupid is as stupid does and in this case he just happens to be a chef. EVERYONE has ther own learning curve and journey with their dagnosis . NOwhere in my training as a chef has there been any special trainiing in how to live a gluten free life, nor for that matter was there any such information in the training I took in nutrition and sports nutrition either for that matter Yes its a shame he is going to get a following for this but in the end each person will have noone will have themselves to blame for their LAZYNESS. I am a firm believer in personal responsibilty in every aspect of ones own life but especially in matters of heath and well being. Do your own leaning whether it be book learned or by listening to your body responses to the foods ingested.
Chef Lesley Davies
WTF? No one said ANYTHING about ALL chefs being this stupid. What’s with the over-sensitivity? Maybe you should read it again.
And Gluten Dude, yes, this guy is an ass. It diminishes our need to be completely GF in the eyes of others. Simply infuriating.
I just reread ALL of the comments and nowhere did it say ANYTHING about chefs except for the “chef” in the video. Please reread all responses before getting so angry. I am very glad that there are chefs that DO know how to cook gluten free! Gives me hope that someday I may be able to go out to eat and feel safe about it!!!!!
Hi Lesley.
There really is NO learning curve when it comes to celiac. You’re done eating gluten…forever. That’s the extent of the curve.
And nowhere was I lumping all chefs together in this. Not sure where you got this from.
And you should be pissed at this guy for making your industry look really, really bad.
Im not angry
I am however teling you that because he is a chef does not mean he should automatically know better . He will learn as the rest of us have.
The fact that celiacs do not want to take responsibilty for their own health and well being is not any chefs fault but in fact ther own. The irresposibilty is on each Celiac that follows the hype and rest do the learning is going to find themselves spending a lot of time uwwell..ITS CALLED PERSONAL RESPONSIBILTY
ON the other side of this have you considered for a momet what it might be like to be in his shoes. Your livlihood makes you sick, I can tell you how hard that is because I have lived it. I had to leave a decent job in order to regain my health due to Celiac disease. After much riduiclule and threats from my boss ad coworkers about it.
Why is it that those with the knowledge are the first to find fault. I am not pissed at him for anything like most docotrs and such he really doesnt know. I do however feel compassion for him for his ignorance is out ther for all to critisize and bitch about as if that helps anyone.
How about we take a different approach to well being one of sharing our information and being personally responsible for ourselvs an the each other in this community.
Because he is a celiac, he should know better. And because he’s a chef, if that’s his philosophy, he’s dangerous.
I’m all for compassion and personal responsibility.
No…honestly I am 🙂
Well said GD! Well said!
I am also all for the compassion and personal responsibility approach. GD is right though, we don’t get a learning curve here. We get thrown into the deep end, usually not knowing what water is let alone how to swim or having floatys. We then sink or swim.
It is because this man is a chef that he is so dangerous. If he were minding his own business, keeping to himself and stuffing his face a few times a year with bagels? Fine, let him kill himself. He isn’t though. He is responsible for educating dozens of employees, and he is telling them that it is okay to give their celiac customers gluten. He is responsible for the health of hundreds or thousands of customers, and clearly is incapable of taking that responsibility seriously as he doesn’t even have the most remote understanding of his disease. He is a danger to his employees and customers.
On top of all that, putting yourself on national television and spouting the most idiotic thing imaginable about a very serious and deadly disease is so incredibly irresponsible that I don’t even know where to begin. Someone who has celiac getting their moronic ass on TV and making the statements he did is right up there with the crap these celebrities like Seacrest are doing.
I think it’s even worse than the pseudo-celebrity gluten free craze. This guy is a chef with celiac disease, Pretty darn weird.
I’ll take your word for what he said (don’t need to hear it from his mouth) but I’m curious whether or not he really has celiac. If he was diagnosed only by small intestinal damage (don’t ask me to spell the technical term or even remember it this early in the morning), celiac is not that well understood by the medical community, even less so whenever he was diagnosed compared to now, and there are other medical conditions that can cause similar damage.
Regardless, it is highly irresponsible of him to flaunt his gluttonous glutenings when others are sure to follow his example and be seriously harmed as a result.
He claims he “100% has coeliac disease”.
In the UK, diagnosis is first by blood test and then by biopsy. Your GP will only diagnose without the biopsy if there’s a medical reason to not do one. And thanks to our fantastic NHS, there’s no financial reason for the patient to go without the necessary tests, as seems to be the case with lots of self-diagnosers from the USA.
I haven’t read his medical notes, of course, but I would assume that “100% has coeliac disease” means the same as in my case – bloods and biopsy both point to CD.
What the f–k is the matter with him. Cheating is not an option for someone with Celiac disease. Crazy if you ask me.
Maybe he was misdiagnosed? My body was rejecting gluten pretty good there before I started the gf diet! So much so, I had to be hospitalized! He’s a fool if he’s definately diagnosed and going on gluten binges. I’m terrified of getting refractory sprue! Not cheating goes a long way to prevent becoming refractory…at least that’s what I was told when I was diagnosed!
My comment is in response to chef Lesley going on about personal responsibility.
I do wonder if he is missing something here. Which is that educated Celiac’s would not try chef Demetre’s strategy of gluten binging in cycles because it sounds so horrifying. But, some that are still caught in the limbo before being diagnosed might. Or those that have had the misfortune of getting bad information, often. And frankly, I consider myself an educated celiac, and I have to at least think about what he’s doing. Because there are still unknowns about our disease, and I consider it mandatory to ‘think outside the box’ when compelling new information is encountered. Chef Demetre’s approach ain’t exactly compelling, there are different words for it, but I am VERY curious about his health while living that way…I bet he doesn’t any longer, but would love to know.
But we are all in this togehter, and so personal responsibility is paramount as has been said; but it varies by situation. I do my part by conferencing with my doctors and sometimes educating them instead of the other way around. Sometimes I’ll take on company whose products are being mishandled by distributors or supermarkets. Or whose products aren’t labeled in the most forthcoming way. I bet most of us do this. Most of us that know we have Celiac disease, and that care about our longevity, anyway.
And it’s also those of us that readily question things. A big point I think, is that many people trust, and trust some more, and rarely question what they think are good sources of information. Chef Demetre may not qualify as a good source. But I can’t really blame a person that simply is too respectful, at least in their own mind, to constantly question what they’re told. Gluten binging probably sets off alarm bells for almost everyone. But some will not know whetehr to listen to themselves, or what they’re hearing from someone else.
Take personal responsibilty for your own health. This will be interpreted and implented differently by different types of people. Is chef Lesley dumping on the less initiated? Probably doesn’t mean to, but that’s what I just read.
Even those devoting their ‘new’ lives, post-diagnosis, to constant education and good practices, can fall prey to bad information. Or sneaky ways of getting gluten through even some of the strictest of filters.
We’re in this together means we cannot dump on the uninitiated, and uneducated among us.
“I am however teling you that because he is a chef does not mean he should automatically know better . He will learn as the rest of us have.”
“Why is it that those with the knowledge are the first to find fault.”
“How about we take a different approach to well being one of sharing our information and being personally responsible for ourselvs an the each other in this community.”
These are of course from Lesley’s 2nd post, and good messages seem mixed in with what I see as contradictions in there, as well as in this thread overall. We celiac’s want the same thing, and we have different ideas of how to get there. Demetre is an extreme, or a ‘beta’ if you will, and my job (as all of us celiac’s) is to see to it that those we are somewhat mean-spiritedly labeling as uninitiated & uneducated, are made to be aware that they are actually on the job too. It’s a Celiac collective that needs to expand it’s universeal reach. And TV, or a chef’s web video information must be taken as extreme (highly questionable and not necessarily medical mainstream) by default.
Binging like an alcoholic!
In time, when the news reports his development of enteropathy-associated T-cell lymphoma.due to non-dietary compliance, I will not be surprised at all. I will, however, be sad that no one told him he was killing himself by being so reckless.
If he was told that celiac remission only occurs by never ingesting gluten again, and he does this bizarre binge gluten eating still to this day, then I say “it’s his funeral.”
We’re all grown ups here. He is making his choices.
Not complying to the gluten free diet is like playing Russian roulette. Eventually, the bullet gets you.
I take responisibility of my disease and the responsiblity of the risk I take when I dine out.
I have Celiac, the only way to live my life is to be 100% as possible gluten free.I know my disease and I know others are trying to find a way for us to be able to eat gluten again and a cure. I don’t believe there will be a cure in my lifetime. If there was a magic pill to take, I wouldn’t. I went through a lot of pain and lost a lot of weight (Ribcage visible)before anyone could find out what was wrong. Gluten was killing me.
What bothers me by this video is, yes, I rolled my eyes and thought..”Are you crazy” because I know what gluten does to me. People should know not take this serious, but a newbie just DX, might not know better.
If you cheat or do something similiar, and tell people you have Celiac and can…I will look at you differently. IMHO you are taking away respect for the disease that the celiac community struggles to build. Comments like this chip away at our safetly. This is for all Celaics, not because he is a Chef. We have enough problems with public figures giving the wrong meaning of what gluten free really means. I feel this way about a Celiac I know who eats a burger off a regular bun. My sister thought I could too.
I don’t think anyone wants to be mean or jump on anyone. IMHO we fight to be taken seriously and to feel safe if we get over the fear of dining out just enough to actually do so. Then hold our breath to see if we get sick.
I think it’s not being mean, it’s being passionate.
I agree. I think most of here are pretty veteran celiacs, but there will be newbies who want to believe they can eat gluten again who will see that video and be mislead.
It’s dangerous and irresponsible.
I totally agree. This was shown on family television. Some people in my family don’t “get it” and this broadcast just made matters more difficult for me. (I won’t vent right now, the post would take pages…) After all, if someone says it on national telly, well, it just has to be true, doesn’t it?
If he wanted to be honest without being dishonest, he could have said something along the lines of “The recommended treatment is a totally gluten free diet but some people with coeliac disease have trouble sticking to the diet because it’s quite restrictive.”
But that’s obviously too simple.
Chef Anthony admits to having celiac and then he says that he goes “on these gluten free diets for months at a time.” That is such nonsense!! It’s a life long diet change. And then he jokes about how much pizza and pasta he can eat within two weeks!! That creates such a misconception of the severity of celiac disease.
I agree that everyone has a personal reponsibility as a celiac to find out information for themselves but the fact that his on television and broadcasting this information creates a big misconception to everyone including non-celiacs. It’s actually disrespectiful to celiacs, as if its a joke to be so sick all the time. This is why going gluten free isn’t taken seriously.
I guess at the end of the day, its up to you to educate those around you :).
I am a coeliac catering manager and i have to remind every chef who i work with exactly what i can and cant have. they only seem to ‘get’ it once they’ve seen me doubled over in the kitchen turning grey and driving my fist as hard as i can into my stomach.
if you’re a coeliac chef – even if you don’t get symptoms – do us a favour, pretend you do to teach everyone around you what is and isnt safe.
what a dummy.
Thought you might all like to know – Aunty Beeb has finally (21 months after the event) broadcast something sensible about CD. I found the link on Coeliac UK’s website, which points to iPlayer (which I think is available only in the UK, unfortunately). Perhaps someone cleverer than me can load it on to YouTube? I believe it was broadcast this Monday on Radio 4 – there’s even a chance that the one member of my family who doesn’t get it might have heard it.
For those who can’t hear it, the gist is this:
They were interviewing a nutritionist about the current trend for gluten free diets.
She explained that for people with CD or a confirmed diagnosis of gluten-intolerance, a gluten-free diet is not a choice, it is a necessity. She also went into some of the problems, such as cross-contamination.
She explained that most people who were eating “gluten free” to lose weight were not actually gluten-free at all, they were just not eating bread. And if you eat less, you will lose weight. But it’s nothing to do with being gluten-free.
She also said that (for those without CD etc) normal wheat products are relatively cheap and fairly nutritious, as wheat contains vitamins, protein, complex carbohydrate and (depending on the product) fibre. In contrast, supermarket substitute products are extremely expensive, and have similar or worse nutritional value.
Her conclusion was that if you NEED the diet, it’s vital to stick to it. If you THINK you need the diet, keep eating gluten for now and book an appointment with your doctor. (And the tests won’t be accurate unless you eat lots of gluten).
And if you are “gluten free” for any other reason – don’t be so silly/pretentious/shallow – it won’t make you any healthier, and potentially trivialises the serious health conditions that 1-3% of the population have to deal with.
I do not know who this wise woman is, but if she were right in front of me, I’d give her a big ole kiss. She says what we say on here, on celiac.com and to anyone who will listen …. over and over and over again.
I would also kiss the woman! Over and over I have called people pretentious asses as they talk about “gluten free” and trivialize the very serious medical need so many of us have. I love that a nutritionist stood up for us publicly and did the same.
It looks like Aunty Beeb has finally put things right (only 21 months after the event…)
http://www.bbc.co.uk/programmes/p013r622
If you can’t access this (I think iPlayer may be UK only, unfortunately) the gist of it is:
1-3% of the population have coeliac disease or medically diagnosed gluten-intolerance. These people MUST eat gluten free 100% of the time and should be supported in this.
Many people think they have gluten intolerance but have not been diagnosed. These people should see their doctor before giving up gluten (or should reintroduce it) as without gluten the tests will not be accurate.
Anyone else following a gluten free diet is doing one or more of the following:
Not properly gluten free (e.g. just eliminating bread and cakes, and the reality is a bit more complex)
Spending lots of money on substitute food (which may be less nutritious and more fattening than the wheaty version)
Risking their own health by not eating a balanced diet
Trivialising serious medical conditions, and perhaps confusing workers in the food industry in the process.
At last – a sensible person on the BBC advocating for us.
By the way – today’s Saturday Kitchen had a gluten-free dish – and no mention of padding it out with a nice chunk of wheaty bread or pasta!
I wouldn’t knock it completely. Eating gluten to treat one’s celiac is an interesting concept and not quite as far fetched as some here may believe. Peptide based immunotherapy holds great promise in future treatments for celiac disease (Even Dr. Fasano describes it as the “holy grail”) so it’s not overly surprising that routine gluten exposure may play a role in modulating/alleviating the body’s rejection of gluten. So there you go 😉
Just thought I’d give you a heads up. This is officially your last comment here. I won’t let you promote your dangerous product on my site anymore.
I think we’re all a little harsh to judge (and, yeah, I know I’m a few years behind here). I was recently diagnosed, and I think his initial reaction to binge every now and then makes total sense (in the beginning). I dream of a once-a-year trip to NYC where i can eat the best pizza in the world. I think of my upcoming trip to Italy and dream of eating crusty bread and Italian pasta. I think of my anniversary trip to Quebec and can’t imagine returning without eating a croissant.
I won’t mind you, but I dream.
I read up on this because, having been recently diagnosed, I think… how bad is a one day binge when I’ve been living 40 years without even knowing?!
The chef has been entirely gluten free for 5 years. I know because I googled the heck out of him, wondering if his theory had any scientific weight. (It’s didn’t, but, of course, you know that already! :))
I think this post was harsh to judge. The food is not the issue when you are diagnosed. The psychological impact is great, though. The idea that we’ll never enjoy certainly societal celebrations that involve food is HARD. He was clearly going through what I am going through now, and what I bet most people go through… a form of denial that causes us to believe, however silly it seems, in a world where we can justify gluten.
Your website has been a God send to me. I have no doubt it has been a God send to many, many other people who are alone and sad on this journey post-diagnosis. I just hope it can be a little bit more compassionate and that the supporters here don’t forget how incredibly sad, and lonely, the initial post-diagnosis phase is. Believing there is a safe way to be “normal” for one day isn’t foolish… it’s just a manifestation of the sadness.