My question for you this lovely morning is simple.
Why do companies who have no vested interest in our health keep coming up with products that they think we need and that can possibly harm us?
Do they think we’re that desperate to feel “normal”?
Ok fine. That was two questions and maybe the answer isn’t so simple.
Check out this page about a new gluten-friendly wheat being developed and then come on back.
Tell me what grabs you first. To me…it was the title: ‘Gluten-friendly’ wheat could let celiac sufferers enjoy pasta — and become a big-money innovation.
Let’s break the title down a bit, shall we?
Gluten-friendly wheat: Gluten is thy enemy and there is nothing friendly about it.
Let celiac sufferers enjoy pasta: I enjoy pasta just fine thank you. GLUTEN-FREE PASTA.
Big money innovation: Now THAT speaks volumes.
I actually think Michael Keaton did a much better job breaking down the word “prostitution” in Night Shift:
For those that didn’t feel like reading the article, here’s the gist. There is a scientist in Italy named Carmen Lamacchia who is making headlines for a pseudo-wheat she is producing. She takes normal wheat and modifies it. The resulting wheat has 80ppm gluten.
That’s four times the amount of what is considered safe for celiacs. Yet she states that her concern is for those people with celiac disease.
Am I missing something here?
Granted, she does say that her modifications actually hide the gluten, so the 80ppm does not matter since the body will not respond to it.
And so is Dr. Alessio Fasano. Here’s his reaction:
“I don’t think that this approach will be useful for people with celiac disease,” says Dr. Alessio Fasano, who directs the Center for Celiac Research at Massachusetts General Hospital in Boston. A prominent expert in celiac disease, Fasano is impressed but not convinced. He says celiac sufferers simply won’t trust 80 parts per million.”
“They want zero. I mean, zero is something not attainable in biology,” he says. “We had to really fight and fight hard with the celiac community here in the United States — and it took nine years of debates — to convince the celiac community in the United States that 20 parts per million, it’s OK, because the immune system doesn’t see it.”
Look, I am not here to question Carmen’s motivation. But here is what I say to her.
Take your frankenwheat and shove it up…wait…let me try another approach.
Who is your market for this? I cannot imagine anybody in the celiac community eating any product that has 80ppm, no matter what you tell them. Why should we? It’s the same reason I won’t drink Omission Beer. If there is the slightest risk, why should I chance it when there are other great options on the table? It simply makes no sense to me.
We are celiacs. We are not deprived because we can’t have wheat. We’re a pretty resilient bunch and don’t want to be treated as some big science experiment.
We feel normal by NOT eating gluten…not the other way around.
Gluten-free food has come such a long way since my diagnosis. So many companies are now producing food that tastes good and that isn’t loaded with crap and certainly don’t contain “modified” wheat.
And of course, there are always naturally gluten-free foods, and plenty of them, that we can enjoy.
Tell me…what benefit would I get from eating your modified wheat?
Eagerly awaiting a response.
(Tell me folks…what are your thoughts on this? Perhaps there is something I’m just missing. It’s been known to happen.)
85 thoughts on “I Don't Want Your "Gluten-Friendly" Wheat!”
My first reaction is WHY. As if we, and I refer to the population at large, need yet another food that has been tinkered with. Isn’t gluten the only advantage that wheat has? It’s what using wheat is all about.
That was my first reaction too. And my second reaction. And…
P.S. We don’t need any more gluten “friendly” food which loosely translates to probably contains gluten.
Agreed Sue. I would really love to see all the effort they are putting into developing these products redirected to promoting awareness of the disease and finding a cure. That would be a hell of a lot more productive. But I guess there’s not as much money in that. 😉
Amen to that.
Reading over this again this morning, perhaps the headline on this article was a bit inflammatory and that’s what a lot of us are reacting to. We don’t like seeing our disease used for profit. The media seems to have a way of putting a really crappy spin on these things – when I read the story on Dr Gibson’s study, I blamed the reporter and not the Dr. That’s what I should have done here. Maybe Lammachia’s motivations are pure – it is not for me to question. If she comes up with a product that really can do what she’s envisioned, then great! For those who want it, they can eat tons of it if they like and safely enjoy the new option that science has provided for them. I just agree with what others are saying here that maybe we don’t need any more modified food since that may be what got us here in the first place. I’ll stick with my rice flour and quinoa. I’m getting pretty good at cooking with those anyway. 🙂
Leave it to MM to give a sane and reasonable response. 🙂
(see what I mean about inflammatory headlines? 🙂
Sorry…no Tuesday Morning Quarterbacking allowed here 😉
oh stop it, you…! lol
it’s Friday….our favorite day of the week!!
I’m not often called sane and reasonable. Thanks Irish! I needed that. 😀
I tend to be all emotion first then cool down and become logical later. Lots of Tuesday morning quarterbacking in my life. Eh, whattayagonnado?
Happy Friday all!
oh honey…we’re ALL Tuesday morning quarterbacks at times.
meaning = we’re human!
I think “big money innovation” tells us the motivation. Just more trying to cash in on the gluten free craze.
I am not interested in an frankenwheat that is “gluten friendly” what ever that means. Plus totally not interested in being an experiment only to be told later oooppps that didn’t work like we thought and your intestines look like hamburger.
I think I will keep my gluten free pasta and my new “normal”
I don’t base my happiness on what I’m not being deprived of. I’m happy with my options and my health. I’m even happier when I feel well. I simply don’t see a need for it. I don’t need to eat wheat to feel whole compared to my wheat eating friends and frankly if someone does that’s not a wheat problem, that’s a psychological problem. If you’re less than content with your life because your diet doesn’t resemble your neighbors we should be talking about self esteem not scientifically modified wheat.
I call Bandwagon on this one. They see an opportunity to cash in on a fad and rented some lab space to make it happen. I’m not fond of GMOs to begin with, so this is my worst nightmare. I can’t wait to be violently sick while some well-meaning person whines, “But they said it was safe for you!”
The other detail “forgotten” in this is wheat as a row crop is gathered in mass, stored in mass, processed in mass & distributed in mass. How exactly is the “safe” franken wheat going to be handled in a way that it doesn’t “accidentally” end up 300ppm because the truck or silo or grinder had regular wheat in it left behind by the previous production run.
I know the godfather of GMO’s whose well meaning science (to improve disease resistance) was sold by Texas A&M to monsanto for red star corn that was banned in the 80’s & just last month was located in 3 fields near my home. Oops isn’t acceptable once this stuff hits test trials. 30 years later the original monsanto monster is still on the loose, how do we expect to maintain natural organic healthy for us foods when the agri-corporate machine keeps churning out the next GMO to “solve our problems”. Does anyone there not notice these dieases weren’t around before we started hydrolizing everything?
Same man that started GMO’s I bless for the wisdom he saw in my comment of “what happens to tomatos 10 or 15 years from now when we discover this didn’t work & these grafted plants are all wiped out?” His reply of “well we would start over” was met with a blank stare when I asked “where will you get the seeds from?” He bought a missle silo from the government the next month & began the first organic seed bank. If the guy that invented GMO’s hedged against them…
At 80ppm, that’s not very friendly. 20ppm isn’t friendly to me, either.
Yeah, I saw $$$ as the big motivator. And I’d be very worried about human trials. Just not worth it.
I like this article.. and i agree keep the gluten free wheat to yourself missy..but maybe the gluten free wheat is not for celiacs but for diet fads!!! being a celiac is not easy and finding the right food to eat is hard especially in countries where gluten free foods are not common. but once you got used to milk, fruits, vegetables, white meat it gets better,atleast that’s my diet
Now, I’m an advocate for the Agriculture industry and a supporter of GMOs, because they are the only sustainable way for farmers to continue feeding the world. That being said, I also have Celiac disease and I think the money and time being put into this project is utterly ridiculous and useless. Why would anyone risk the damage to our bodies when we clearly know that 80ppm is not acceptable to us? “Big money innovation” does not mean that it is worth taking that chance or that it will become a staple in the diets of the gluten intolerant of the world.
Just my thoughts.
Other than for those fad dieters who don’t even know what gluten is, what is the point of this??? It seems like just another ploy to make money off the trend. I am lucky enough to have an amazing spot near my house where I can get Depuma’s pastas AND imported gluten free (celiac safe) Italian pastas. That’s good enough for me. Unless it’s less than 20ppm…not even going to attempt going near it!!
My initial reaction was, Hey, I enjoy gluten free pasta all the time! I would never take a risk and eat wheat of any kind. 80 ppm is unacceptable and I would never risk my health and happiness for it especially when my diet is more than satisfactory.
Ignorance on their part? Desperation to not lose the wheat market? $$$ signs in their eyes? In any event, I’m not interested and not impressed. I LOVE my rice pasta better than I ever liked wheat pasta. And my rice pasta doesn’t make me sick! So there!
An emotive and alarmist mock-up picture, some anti-science ranting … this is a real shame.
GM is being looked at, drugs are being looked at, vaccines are being looked at, helminthic therapy is being looked at, improving GF food is being looked at … every avenue should be explored, potentially, and there are hundreds of scientists doing this extraordinary work. I don’t know of many diseases which can boast such amazing ongoing research. So when coeliacs slam the scientists involved in it – witness Gibson too – it’s a heart sinker.
Is it fair to slam potential therapies or treatments or innovation that you would never use or don’t personally approve of – without much apparent consideration for those who may like them? Some people want to eat gluten-y bread again; some don’t. Some might be happy to have a hookworm or ten attached to their guts; some wouldn’t dream of it. One person may not see a therapy as something worth investing in, but others might. The scientist’s work may not yield a viable outcome, but it may lead to important solutions in other areas.
I really struggle to see why anyone would want to stifle such extraordinary science. Emotional responses to this I don’t think are helpful.
Yikes Alex. I am not anti-science in the least. You mention vaccines, therapies, drugs. All good. This is something totally different. It’s modifying food and for what?
I am all about progress and searching for the unknown. And who knows…maybe long term something will come of this.
But right now…I’m skeptical. Call that emotional if you want.
Emotional response??? The article indicated I wasn’t able to enjoy pasta and needed a gluten-friendly wheat so I could. It was wrong. So if that is why the scientist is developing her product, she miscalculated. Or maybe there are celiacs out there who are craving wheat pasta. Maybe I’m the exception. Guess we’ll just have to wait and follow the money on this one…
Skepticism, if based on evidence, is not emotional – just as Fasano’s isn’t emotional. I’m not questioning anyone’s skepticism.
I’m sorry, Dude, but I’m frustrated by the lack of respect shown for the scientist (the invitation to put her work into her rectum, commenter referring to her as ‘missy’, the questioning of her motivations and suggesting they’re financial – as if that were a sin).
Between the lines, what I see from the post and some of the comments that have followed essentially amount to this: “I don’t like this and I don’t want it therefore it shouldn’t be done and the person doing it is bad”. Don’t you feel these are selfish emotional responses – unfair to the scientist, and unfair to those who may want what is potentially being offered?
I appreciate your willingness to discuss this Alex.
I am a self-proclaimed wise ass. So my “shove it” comment, just as my Young Frankenstein image and the Night Shift video, is meant to break up what can be a serious topic and entertain a bit. It’s what I always try to do.
At the end of the day, this is my blog and if I didn’t get “emotional”, it would make for a pretty boring blog. Opinions are what makes the world go round.
I’m not telling people how TO feel. I’m telling people how I feel. They are more than welcome to disagree.
Of course, GD – and I want to stress I’m not using the word ’emotional with any negative connotation, per se, more as an opposite to ’empirical’. There aren’t many people who can trigger such a lively debate as you, and thank goodness for it, as they are important to have. Even if we disagree, I think what we can agree on here is that we all want what is best for those on restricted diets – but I sincerely believe that’s the case for most scientists too. I only wish more would engage on social media, or blog, or use FB / Twitter …
Oh spare me the butt hurt act!! I know the actual farmer & THE scientists that started GMO’s & even they believe they released a monster. Hell “franken food” was their word, they invented.
I’m sure your job feeding the lab rats at the food company will still be around without 12 person studies on hookworms & 80ppm wheat that legally can’t be sold as anything but expensive regular flour.
These “studies” aren’t ground breaking anything…they are over publicized false hope. Anyone with a science or agricultural background isn’t finding hope in a 12 person not peer reviewed study using known deadly parasites or GMO’s 4 times past the “acceptable threshold” established by the government. All hail the gods of science & shaming dude because he won’t drink the kool-aid reeks of desperation. Exactly what food company do you work for?
Mr. Gazzara wrote a book about celiac. He knows quite a bit about the topics actually and he has a right to express his opinion.
I agree with what he is saying about being open to the science and the research before we gat all upset over it, so I suspect I, too
will be called names and considered “in it for the money”?
Whatever happened to reading comments and considering what someone has said before getting abusive? What about reading critically and seeing that you can be skeptical without being
abusive or negative?
Not too long ago, I told GD privately that this kind of thing is why I stopped posting here as much as I used to….. because so many of the commenters have a “it’s my way or the highway” approach….and right now, I’m sorry I came back to try and speak on this subject at all.
I don’t have anything to hide – which is why, unlike some who do hide behind a pseudonym, I offer my full name and link to my website, where you can see what I do. I’m a writer, specialising in food sensitivities. I don’t work for a food company. I am not a scientist. Neither am I a coeliac. I have, though, interviewed hundreds of scientists and coeliacs over the years and the picture I have formed from that experience is not a reflection of what I’m seeing here.
Fyi…I have nothing but respect for Alex. We should be allowed to state our viewpoints without going off the rails too much. I don’t question his motivations here.
Alex, so sorry for misspelling your name (above)
As you know, I have the utmost respect for you and between autocorrect and the tiny buttons on this borrowed tablet, well, I see I made a mistake there.
Don’t give it a second thought! Have had many ‘alternative’ spellings over the years and always nice to see a new one!
I would be pleased to take the emotion out of it, Alex. The point is this – the product this scientist is creating has gluten in it. Gluten is dangerous – and that is not an emotive word, it is entirely based on fact – dangerous to celiacs. Whatever science is being done to arrive at products that do not contain gluten is praiseworthy. The problem is that this condition is entirely binary – if there is gluten present, there’s danger. If no gluten, no danger. Would anyone feel safe walking through a minefield if the sign said “Come on in, this area is now 90% mine-free”? Don’t start advertising a solution until you arrive at the solution.
I don’t think your analogy works. The issue over whether the wheat is GF or not is somewhat redundant if what she is working on works: she is saying that the gluten present will not trigger a reaction. It’s not about 90% mine-free fields. It’s about a field which has some mines in it – but that are guaranteed not to go off. At least that’s the theory.
She’s not advertising a solution – she’s talking about her work and what she hopes to achieve. Putting it out there invites feedback (we’re all giving it, let’s face it) which could be useful to her, and could invite investment (which would help her work) and input from other scientists worldwide could help her too. Do you also feel Fasano’s zonulin treatment is advertising a solution before it’s been arrived at? Are other scientists to be criticised for putting forward their theories, plans and early results of their work?
” input from other scientists worldwide could help her too. Do you also feel Fasano’s zonulin treatment is advertising a solution before it’s been arrived at? Are other scientists to be criticised for putting forward their theories, plans and early results of their work?”
Exactly my point.
My concern is when I get the “we have gluten free” spiel at a restaurant, and they’re using this. When Dr. Fasano, who has a lot more brains and experience with this than me, is skeptical? My ears are going to perk up.
Get it down below 20ppm and we’ll talk. Otherwise, thanks for the effort, but, uh… no thanks.
I just wrote about this topic yesterday myself. (let’s put aside the headlines and the inflammatory phrases about “gluten-friendly” for a second–because that is a nonsensical term)
Actually, she does have celiacs in mind. Her motivation seems pure. And why does everyone always think scientists are doing research for the money??? I never assume anything like that ! I saw that comment more than once about Dr, Gibson and it was unfounded. If people took the time to read the evidence he discovered, they would have seen he was trying to help people who still had bowel issues after going GF. He is helping people–
and rational people might see that if they got past the inflammatory headlines–and leading gastro docs are utilizing the FODMAPs diet to help their patients when it is not celiac and not NCGS. THAT’s the benefit of scientific inquiry!
Dr. Fasano (our GF hero) is working on a therapeutic drug for celiac patients, nd he could potentially profit from it, so should we also accuse him of being in it for the cash??? Nope.
While I am not eager or willing to be a guinea pig who tests the “gluten-rendered harmless” product she has developed just yet, I think she is also trying to help. She teaches food chemistry at the University of Foggia. It says right in the article that : “she’s concerned about people with celiac disease, an autoimmune disorder. For them, gluten is toxic. It destroys their intestines, blocks the absorption of nutrients and fiddles with the immune system. But Lamacchia says it won’t stay that way for long. “Oh, it will be a revolution,” she says of her treatment. “The part which is toxic, it’s, like, hidden. The enzyme in the celiac patient’s intestine won’t recognize this protein, and won’t activate the inflammatory process typical of the celiac patient.”
My takeaway from all this? I applaud her efforts to at least try to provide a solution. And Dr, Fasano’s quote suggests even if it were harmless, the celiac population –some of whom still argue vehemently against the science that proves 20 ppm is safe –would not embrace the concept “just because” it is a scary proposition.
Until proven safe in clinical trials, I remain interested and intrigued, but still unconvinced at this time. It does not mean I think she’s mercenary. I think she’s a scientist who is exploring options and I applaud anyone who does any research that benefits the celiac community as a whole.
Understood Irish, but here is my question. You say “I applaud her efforts to at least try to provide a solution.”
I’m not clear what she providing a solution for.
Consider this: maybe it will be a more affordable product?
Everyone bitches over the cost of GF products on the market, so what if it is deemed safe and can be marketed as a more affordable option? Especially for families with more than one celiac who is on a budget.
None of us knows where it may lead.
That’s the beauty of science and inquiry!
Let’s consider this: she’s still working on it,
it’s not on shelves yet,
It has to undergo years of clinical research first
Before we all get our collective panties in a bunch over it,
maybe we should see where the research goes.
Let’s keep my panties out of this. That was supposed to stay between you and I 😉
I believe the point she’s making is “at least science gives a damn about us & is trying even if they are still on the wrong roads”. Maybe someday they will get it right…hopefully before they mass market the “almost there gluten friendly 99% gluten free” cookies to the masses. Oh wait, that was a different blog 😛
Actually, that was not my point at all . Please don’t reinterpret it .
I think I was pretty clear the first time.
I wholeheartedly agree with you Irish.
I seldom ever participate in discussions anymore because believe it or not, not everyone is truly entitled to an opinion in the celiac world. I seem to be one of them.
Yes, I wish I could have all the foods most people can and do eat. I’m not sorry I feel that way. I detest being different and I don’t have any use for the drama of it all. Having celiac is miserable for me. Frankenwheat sounds pretty dramatic to me…sorry about that. Let the research continue. No this wheat isn’t the answer for now.
Different subject….I noticed someone wanted to know how much money Dr. Peter Gibson was paid to change his opinion on ncgs. I believe almost everyone has their price. In 2010 Dr Fasano’s research was given 45 million dollars after he was able to diagnose a very wealthy lady as having gluten sensitivity. I’d say that’s pretty close to the term non celiac gluten sensitivity. The lady doesn’t have the genes that are known to cause celiac disease but she had diagnosed herself as celiac and she had a lot of money to donate. The sad part of the story is the fact that the day her husband handed the check over to the good doctor and the University of Maryland, she was home feeling unwell. I think FODMAPS do need to be looked into. Just saying…
One more thing. Please don’t go hating on me for this. I do have feelings…I don’t dislike any of you and sometimes I cry because of my lack of acceptance. That is a fact. I wonder why people don’t want real answers as to why they don’t feel well. Settling for less is to cheat yourself from having the good health you so desire and deserve to have. If you have a brain tumor, do you really want to be treated for a migraine?
Peace to all of you and may the research continue 🙂
I have been in my gluten free diet for 7 and a half years and honestly cant remember if “normal” pasta tasted any better then the corn or rice ones I eat now so I’m not so sure I would want to take this risk it wont be worth it in my eyes. What kind of scares me is a lot if the gluten free pasta available to me is Italian made (more companies are slowly appearing but are a lot of expensive) so I’m a bit worried the this product might start appearing in my pasta packet and maybe in a hurry I could eat this by accident or the labelling may not be entirely truthful. I think id much rather avoid it then risk it to be honest.
This doesn’t in the least peak my interest to try. I am so sick of getting accidentally glutened even by some “gluten free” items so why in the world would I even entertain the thought that this would be safe for me. I am completely content with what I have to do on a day to day basis. Does it suck sometimes and cannot be hard? Absolutely!! Do I feel better?? More often than not. It is worth the work put in. I wish that people were sincere in their efforts of trying to help…. But all I see is “how can money be made”
I echo the sentiment that Miss Lamaccia can keep the Frankenwheat. The article smacks of the negative message I got from my Godmother and her immediate family members when I told them their crop makes me sick. They grow wheat, so OF COURSE they’d shun me and treat me like a second-class citizen. Who needs the 80 ppm gliadin in this “new, improved” wheat strain?! 80 ppm isn’t safe. I’ll still have a bad case of the s÷/$s after eating it, so I’ll just nicely pass, thanks. Besides, I’ve found rice pastas and corn pastas that taste fantastic. Lamaccia can take her new “gluten friendly” wheat strain and do a bowel routine with it (stick it up her ass like she would a suppository). I don’t care to participate in any experiment she wants to try. I’d sooner have a good friend kick me in the ass with one of her Harley boots than have anyone gluten me. So why don’t we spare ourselves the irritating whines from those that know no better and skip right past anything labelled, “made with gluten-friendly wheat”.
I eat pasta – delicious, fresh, gluten-free pasta – probably once per week. There are several brands available, in both dried and fresh varieties, that are yummy, have great texture, and most importantly are NOT MADE OF WHEAT! I have no idea why this scientist thinks there’s even a market for an 80PPM wheat pasta.
Dude, you aren’t missing a thing!! You said it SO perfectly that I can’t add anything to what you said. You took the exact words *right* out of my mouth!! 🙂
I agree with you 100%!!! And the fact that you used a scene from the movie Night Shift to illustrate your point makes me love you even more. Gluten Dude, you’re alright in my book.
Why don’t people simply listen to celiacs and just accept that we are all about the 0ppm as the only acceptable standard for us, nothing more. We’re not high maintenance, we’re worth it.
ps- My villa says screw you 80ppm.
No such thing as 0ppm. 20ppm is right now what the experts like Fasano are saying.
Just a comment on some of the comments – What is wrong with a scientist or a company doing research with the hope of developing a new product/medicine/etc? I have done medical research – I didn’t do it for free! I had daycare to pay and a mortgage. Its sort of basic economics – if a company can’t make money for its owners or shareholders, it will go out of business. Most people can’t afford to work for free – sure there is some volunteering – but you can’t develop a new product or do research very successfully with volunteers. If a company develops a “bad” product, it won’t sell and that happens sometimes. They have developed useless stuff like glow in the dark Halloween teeth, Snuggies and Huggies – I don’t have to buy or use them. They can use some of that technology to make things that are helpful like glow sticks for emergencies and glowing genes for medical research.
Absolutely nothing is wrong with it LB. Science is a damn good thing. My question is simply of the need to produce something that I don’t see our community clamoring for. She is free to do whatever she would like, just as we are free to talk about it.
Its certainly worth discussing. Not sure we need it either. But I am just commenting to the people that think all research is done for money and that is bad. Of course its done for money. If they are wrong, and no one wants this “wheat” – then they will lose money.
Exactly, Ms. bean
Fasano’s comment really gets me. The body can’t recognize under 20ppm? I’d like to take some Omission to the steps of his fancy hospital and show him what 20ppm does to me.
My two cents…Dr. Fasano has devoted his professional life to helping the celiac community. If he says 20ppm is ok for celiacs, I am not going to disagree.
He hasn’t always said that. I’ve seen a video of him explaining how the 20ppm standard for food became accepted at FDA because it made it easy enough for producers to help the greatest number of people. Fasano acknowledged that a minority of celiacs were more sensitive. I don’t have the link and he may have changed his thinking, though he did participate in a study that gave a much more restrictive diet to patients who weren’t doing well on the standard GF regimen. Guess what the results were.
I gave you the link to that study a while back because we have discussed this topic before. It included people who supposedly had “refractory sprue.” (this study confirmed that they did not)
They were put on the diet of plain rice, meat, fish, vegs, fruits, some cheeses and no packaged foods for 3-6 months
They all healed and later, the vast majority of them were able to reintroduce all foods —as in a “regular GF diet” —which includes packaged certified GF foods and grains. (the very thing suspected as being a problem)
“Most patients who respond to a 3-6 month course of the GCED are subsequently able to return to a traditional GFD without return of symptoms. ”
This did not affect Dr. Fasano’s opinion that <20 ppms is safe for celiacs. I have seen him speak on this very subject (as has Gluten Dude. I know because he was sitting right next to me).
And he explains the <20 ppm threshold in his book Gluten Freedom which I encourage all celiacs to read as it is invaluable information.
My two cents (Canadian – I know it’s worth a little less, lol). With all due respect to Dr. Fasano, who I understand from my research, pretty much singlehandedly brought attention of celiac disease to North America. So, we have MUCH to thank him for. However, I just wonder – if, say Dr. Fasano had celiac disease himself, and was as sensitive as someone like Stephanie, would he still think 20ppm was okay. I realize 0 doesn’t exist (except in fruit, vegetables, etc.). I would love to see the science/medical community work on bringing more awareness of the disease and easier and better testing, so that people don’t have to live for 10, 15, 20 years getting sicker and sicker. I have a lot of Crohn’s and colitis in my family (which I think is related) but doctors still insist that diet has nothing to do with it. I have to agree with Gluten Dude, I can’t see the point of this kind of research when there are so many other avenues to explore with this disease and many others.
Really don’t understand why people think we have a need for this sort of stuff.. I went to a mandatory (sigh..) yearly nutritionist appointment the other week and explained to her that I don’t eat grains/gluten/dairy/soy/eggs because of a variety of food intolerances. When she asked me if I ate cheese, I replied ‘no – it has dairy in it’. Then she asked me if I ate any dairy-free cheese substitute… I told her most have soy in them, and since I’m intolerant to soy, no, I didn’t. She then went on to tell me that apparently there is a dairy-free and soy-free ‘cheese’ you can buy made out of hydrogenated oils and artificial flavourings (her words, not mine!). I asked her if there was any benefit to me eating it, and she replied ‘well, health-wise, no, but don’t you want to eat cheese again?!’. Aaargh! Thank you for always sharing your balanced approach to these sorts of situations, Dude – I definitely wouldn’t be able to stay as composed!
“Don’t you want to eat cheese again?” Ugh…not my kind of nutritionist.
Honest to goodness, you can’t make this stuff up “but don’t you want to eat cheese again?!”. I am with the Dude, this is not my kind of nutritionist.
I love this blog for it’s spirited debate. It keeps me thinking and let’s me see that there are a lot of folks that think like I do. And a lot of folks who don’t.
That’s what makes the world an interesting place.
Thanks Gluten Dude for giving us a community.
P.s. Irish Heart, I miss hearing from you when you aren’t around. 🙂
Thank you for your thoughts and your kind words.
I have a FB page now (although I was sort of “peer-pressured” into it haha!) and so, I’m still “around”.
I hope you’re doing well! 🙂
So do I 🙁
I’m standing right here…;) look, see, glass is raised…slainte!
I’m a newly diagnosed (biopsy) asymtomatic celiac, and I’d love to eat pasta. I don’t eat meat so I have no interest in Paleo, and am extremely unhappy with this whole diet change. I’m looking into how I can get all my nutrients and calories through a liquid diet–my eating choices are exactly the opposite of the things I liked to eat, so why bother?
As the saying goes, “you can’t make this stuff up”. Upon reflection, I give the scientist the benefit of the doubt and give her kudos for trying to make a difference. However, she has missed the point that you make, in that modifying wheat is not necessary. So in my opinion the prudent thing to do is to remind ourselves (the celiac community) that modified wheat is not a path that is worth pursuing or not research worth putting valuable resources into. Your blog, then, is doing the prudent thing.
Having been a Celiac for now nearly 10 years,The quality and availability of gluten free foods has greatly improved in the time I’ve been diagnosed. My 6 year old daughter is also a Celiac and developments like this, a pill, vaccination or whatever it might be — give me hope for her. I grew up eating whatever I wanted (and paying for many years of stomach aches, vomiting and the big D until I was diagnosed), but it is so hard to be a child with any food allergy, and I do my best to make her feel “normal” — I can’t do it all. A pizza party is the reward for everything in elementary school. While a gluten friendly wheat with that level of gluten will not be something that we will ingest, my opinion is if it leads to something else in the future that will let us Celiacs enjoy baking at home without blending 6 different flours, mixing xantham gum, egg replacer and with fingers crossed that it won’t end up a disaster — then, it might be worth it. (I do not LOVE the idea of GMO’s and would be skeptical and do my homework before feeding something like a modified wheat to my daughter), but my daughter ass me me often (while watching someone eat something containing gluten that she once enjoyed before her diagnosis) mommy, when I don’t have to eat gluten free anymore, can I have that again someday? I respond… someday, maybe…. and I am hopeful that is a true response.22
My thoughts? First, the term “gluten-friendly wheat” makes my teeth itch. The moisture and microwave process takes normal wheat and at least partially denatures the precursors of gluten in it. (Denaturing does not seem to me to be a friendly process at all.)
And I don’t understand the results of the process. “‘After modification with microwave treatment, we get an amount of gluten of about 80 parts per million,’ Lamacchia says. That’s about 10 times less than regular wheat.” And then later the article says “Lamacchia says the immune system doesn’t see her modified gluten either. Twenty or 80 parts per million don’t matter if the quality of the gluten has changed, she says…” The first statement seems to me to say that 10% of the gluten remains, but the second seems to say that that portion of the gluten has been altered, too.
If the process doesn’t change the properties of the wheat that make it such a good bread ingredient, and if lots of other celiacs try it without ill effects (and if its harmless nature were medically verified), then I’d happily use the altered-gluten wheat flour in my pizza crust. But I don’t see getting to that point in less than five or ten years, if ever. Meanwhile I’m having fun experimenting with different flours and gluten replacers, and the techniques for using them.
Hi Irish Heart, I’m following up on a response of yours. In May 2011 FDA published this study of the varying sensitivities of people with CD. They survey many studies, looking at morphological and clinical changes. While ppm is a factor, total daily intake also makes a difference. Check the conclusions.
At a lecture here in NY, where Peter Green of Columbia spoke, the former nutritionist at the Celiac Center, then working for Schar, said she worried about people that were eating processed GF foods as the bulk of their diet. They were risking getting over their daily threshold.
I believe the ppm metric is only one measurement, and that Celiacs should be getting most of their food from naturally GF foods. It’s also much healthier, but then the vested interests aren’t going to be promoting that choice. I hear too many complaints about people on the diet who continue to have symptoms.
yes, that would be Anne Lee, RD…gluten dude and I met her too.
She encourages eating certified GF grains.:)
If anyone is interested, here is Fasano’s 2011 letter explaining his reasoning behind 20ppm. Note that 10mg total daily intake of gluten is the limit, which is 1 pound of food. (for real?)
yes! most people do not realize how much that really is…which means people are not getting close to the upper threshold of 20 ppms at all…which is what we’ve been trying to say all along.
NOBODY eats that much GF crap in a day, right? 😉 right.
Have a great weekend!
I think I eat a pound of food just for breakfast.* Anne Lee was being serious about people ingesting too much gluten even as they were eating GF foods. Why are so many people on the GF diet still symptomatic?
*mostly plants and egg whites.
That would be one pound (500g, but who’s counting) of 20ppm food. One could have other stuff known to be gluten free (meat, fruit, vegetables).
All that assumes 10mg of gluten can be tolerated, and apparently for many or most celiacs that is the case. Other celiacs and gluten sensitive individuals apparently cannot tolerate that much.
Re Sr. Hefe at 5:09pm:
IMO people who are still symptomatic are likely either in the hypersensitive group, or are reacting because of other conditions than celiac disease, and/or not necessarily to gluten, but to other substances in wheat. Or to some combination of things. There’s so much we don’t know.
Interesting that it’s coming from someone in Italy.
But I would say HELL NO.
You know it’s going to be more ammo for the “low gluten” people I already don’t understand.