Dr. Peter Gibson, for those of you unaware, is Professor and Director of Gastroenterology at The Alfred and Monash University in Melbourne, Australia. In 2011, he published a study that found gluten can cause distress to those without celiac disease.
Non-Celiac Gluten Sensitivity was given legitimacy.
In 2014, to find out more specifically what was causing distress to non-celiacs, he did a second study. You can read the results of the study here.
In essence, the second study showed that it was perhaps FODMAPS were more to blame. In Dr. Gibson’s own words, “In contrast to our first study…we could find absolutely no specific response to gluten.”
Was he saying NCGS did not exist? Not necessarily, but as most of you probably know already, the media doesn’t care about the truth. All they care about is headlines. And boy, did they run with it. And before you know it, everybody and their mother was saying that unless you have celiac disease, going gluten-free is complete and utter bullsh*t.
My heart ached for those without the celiac diagnosis.
To get to the bottom of this and to really try to clarify and explain what Dr. Gibson’s study showed, I reached out to the man himself to see if he would grant me an interview.
He was game.
It’s a long read, but it’s worth every second.
Many thanks to the good doctor for his time and efforts.
Here is the interview….
GD: To start, I cannot thank you enough for taking the time to do this. It is beyond appreciated.
There is a great line in the movie Margin Call where the big boss wants to know why his company is in such trouble. He says to his underling: “Maybe you could tell me what is going on. And please, speak as you might to a young child. Or a golden retriever. It wasn’t brains that brought me here; I assure you that.”
Well, it certainly wasn’t brains that brought me here either. I’ve read your study over and over again and it is still not clear to me what the actual results were and what they mean.
So in the simplest terms possible, can you please explain your latest study, what lead up to it (i.e. what made you do a second study after your first one), how you to came to your conclusions, how FODMAPS come into the picture, etc. Just walking me through the process would be a great benefit to the community.
PG: Most people who have NCGS have functional gut symptoms – those that we usually put under the banner of ‘irritable bowel syndrome’. In other words, they have IBS that seems to respond to a gluten-free diet. This diet reduces many things since the cereals (wheat, rye and barley) have many components that include proteins (gluten and non-gluten proteins) and fructans (a FODMAP). When people say they prove gluten is the cause, they used what-containing bread usually. Thus, there is no proof that it is the gluten that is causing the problem. We wanted to start sorting out what it is in wheat that is causing the problems.
We knew that FODMAPs cause IBS symptoms in those with sensitive bowels (visceral hypersensitivity) because they induce distension of the bowel. We also knew (from our studies) that reducing FODMAPs markedly improves IBS symptoms in about 75% of people.
In those who improved on a GFD, it may have been the reduction of FODMAPs, but we needed to determine whether the wheat proteins were involved. The only way to do this is to challenge people on a GFD with wheat protein not containing (i.e., stripped of) FODMAPs (which is used in the food industry). Our first study was a pilot where we treated two groups with GF muffins and bread spiked or not with gluten – and the gluten-treated people had more symptoms. This was a small study but the signal told us we needed to do the ‘gold standard’ study where the same people were challenged with both (i.e. cross-over) in a blinded way.
To ensure high quality, we fed all the participants all their food for the study. We were only able to show a specific effect of the wheat protein on their gut symptoms in 3 of 37 – when this was repeated, none of the 3 had specific response to wheat protein. Thus, it is highly like that, in those we studied, none had wheat protein sensitivity.
Before these subjects started the diets, we instructed them on how to reduced FODMAPs in addition to avoiding large amounts of wheat, rye and barley. They all improved with this approach before starting the study. It is always best to have people with minimal symptoms to start if you are trying to induce the symptoms. However, it also showed that FODMAPs were contributing to their symptoms.
GD: I will ask this straight out. In your mind, does Non-Celiac Gluten Sensitivity exist?
PG: It does if ‘non-celiac’ is really ‘non-wheat protein’. We have no studies that have specifically looked at gluten itself. We chose people to study who had normal small bowel on biopsy or who did not have the genes needed for coeliac disease – we did not want undiagnosed celiacs in our study. The work of others have shown that wheat protein sensitivity seems to occur in 70% or more with minor changes in the small bowel biopsies, but they do not have celiac disease on several criteria. Thus, wheat protein sensitivity (currently referred to as NCGS) is likely to occur.
The other factor is that the two mechanism (protein-induce injury or inflammation and FODMAP effects) are independent of each other and both can occur in the one person. This has not been directly studied because we are still struggling to devise good methods to identify those with wheat protein sensitivity.
It is also worth noting that in our study on NCGS, wheat protein did cause current feelings of depression – a finding that is currently being re-examined in a larger and more complete study (the other was another ‘pilot’)
GD: The media, looking for click bait as they tend to do, absolutely ran wild with your findings. Some of the headlines included “Gluten Intolerance May Not Exist” (Forbes), “Gluten Intolerance May Be Totally Fake” (Huffington Post), “Doctor Who Started Gluten Free Fad Says He Got It Wrong” (ABC News), “Unless You Have Celiac Disease, Gluten Sensitivity is All in Your Head” (PBS) and I could go on and on. What is your reaction to the press your study got?
PG: It is a pity that findings are over-interpreted and ‘dramatic’ spins are put on data. The people who suffered the most were those with IBS and food intolerances – the non-believers felt justified in saying it is in the imagination. IBS is not all in the head. The real question that was at times missed was what part of wheat was causing the problems. It is quite difficult to understand how the fact that demonstrating wheat protein is not the cause in a group of people equates to the idea that these people do not have a problem at all (except in their imagination).
GD: Social media went crazy as well. There was a big backlash against gluten-free anything as a result of this study, and yes, celiacs felt it too. A LOT of people’s takeaway was that anyone who orders GF food is just crazy. If you could release your findings again, would you word it differently so it was not taken so out of context? Or was it taken out of context?
PG: We presented the study results. I would not change anything.
GD: I’ll be honest…many in the community are confused about the study. They feel it was not done with enough people, or that it was compromised because Weston Foods, one of the largest baking companies in the industry, funded the study, or that the right people were not chosen, etc. In essence, they are trying to find blame in the study. I am certainly not asking you to defend your integrity, but what would you say to all of these people who feel so, for lack of a better word, betrayed?
They are confused because of the spin and over-interpretation in the media. The whole area is confusing and our study has shed light upon a couple of aspects only. The number of subjects was more than sufficient for the study. Have you ever tried to feed 37 people for several weeks? Often results do not support one’s strong beliefs. It is essential to keep one’s mind open as our current understanding is likely to be naïve at best. Then we can keep developing. Not sure how it can be compromised by Weston’s providing some grant money in conjunction with the Government body. It was designed to find answers, not a particular answer that had been scripted.
Dude note: I opened up to Facebook to see if anybody had a question. Oh boy, did that generate a lot of responses. Here are a few he answered:
Question: They made that placebo thing, right? People with NCGS may sometimes react to gluten as celiacs do; some react after 30 minutes and some others after 2 days. So if they just feed a person gluten one day, the next day gluten free, etc. and the person doesn’t have a quick reaction, does that make the experiment useless?
PG: The specific diet was fed for 7 days continuously. All subjects in a previous study developed symptoms within 7 days.
Question: It seemed to me that the sample group was skewed, not only small, but mostly “self-diagnosed gluten sensitive” or something close to that. My question is why only self-diagnosed? What about others who have actually gone through all of the celiac tests, gotten a negative for some reason, yet were either told by their Dr after testing they were NGCS and still react well to a gluten-free diet?
Answer: All had gone through the standard test. They all fulfilled the current definition of NCGS. We sought people who believed that is what they had and then ensured that all criteria were fulfilled.
Question: He tested the theory by introducing pure gluten into the subjects’ diets. Is it possible that some of them are sensitive to something else that coexists in gluten containing food? Does he have any plans to do any experiments to explore this possibility?
Answer: It was not pure gluten. We just assessed wheat protein that did not have FODMAPs in it. The reason for doing the study was to separate FODMAPs from wheat proteins (including gluten) because the FODMAP content was possibly the ‘something else that coexists with gluten’.
Question: What is his reasoning for discrediting blood tests that confirm NCGS? (Add I added this to the question as well – This is a biggie actually. Some professionals swear by the blood tests. Others say they are totally bogus. I would love to hear your thoughts.)
Answer: There are no blood tests that confirm NCGS. That is not opinion, but fact.
Question: Why didn’t he involve coeliacs in the study? If he included coeliacs in one group and those with self-reported NCGS in another and ran the same dietary trial in both groups and saw worsening of symptoms in those with CD but not NCGS when exposed to gluten, then I’d believe it more.
Answer: That would have been interesting to have a ‘positive control’ to ensure that the methodology, food etc was right. However, there are limitations in what you can do and it is very difficult to get people with celiac disease to take gluten – particularly if the study is not really about helping those with celiac disease.
Question: Why do fools fall in love? (thought I’d end it on a humorous note)
Answer: We are just designing a pilot study so do not have any results yet.
Dude note: I wrote this last night. Woke up this morning to the following headlines on major media outlets:
“Dear America: Quit Flipping Out About Gluten”
“Gluten is the Least of Your Problems America”
“Eat Bread”
Yet Time Magazine just published an article titled “The Rise of Celiac Disease Still Stumps Scientists”.
Gee…I wonder which will get more press.
I like this:
“We have no studies that have specifically looked at gluten itself.”
And I like this:
“It’s essential to keep one’s mind open as our current understanding is likely to be naive at best.”
Oh dear….
From reading this and other blogs for over a year now, I’m convinced that some people who do not have the damaged villi and other signs of celiac disease do react (some quite intensely) to something in wheat and some other grains. (Therefore the sensational headlines didn’t make much sense to me.) It’s too bad the handle tagged on their ailment(s?) includes the word ‘gluten’. I think Dr. Gibson’s responses made the situation a little clearer, but part of that is to further convince me that the situation is not clear at all. Lots of research to be done.
Dick
I am only wondering who paid this guy off to make this study happen? When I see things like this article with as much as fuss and griping as we see or hear in the media, I can only think pay off to spin the story to someone else’s benefit. I am by no means a conspiracy theorist but this just looks odd. I am not saying either issue of NCGS or FODMAP’s isn’t real, and that their could be a co-morbidity and relationship. But I have seen other stories like this out there. I’ve even had some nut try to tell me that I don’t have Celiac’s have problems with specific foods. Well no crap Sherlock, tell me what I don’t know already, DUH!!! They have also stated Celiac disease is about as valid and real as climate change. Sorry but I feel this is a study being forced to look this way due to the populace realizing that grain and gluten can cause some problems which spawned others to follow suit out of anxiety and fear.
Sorry for typo and continuity errorNew to tablet typing.
For some of us, its not the gluten but the sulfates that are used in some gluten containing products. This is what my allergist told me. He said to avoid the sulfate, I would also need to avoid the gluten.
Marsha,
Thank you for mentioning that, I am extremely new to all of this and feeling overwhelmed. One thing I’ve never tolerated was spreading fear, uncertainty an doubt. I had never thought of reaction to things like that, probably because I’m wanting to get things perfect. Big other fault I have is nit picking myself. But thank you, again for informing newbie me. ~takes dunce hat off as she learned something new today~ at least now I am aware why my Dr maybe told me to avoid some other foods as well. Thank you , once again.
I will be tested soon with a biopsy for villi damage, but as far as I know, I don’t have celiac disease and my bloodwork was negative. The thing is, I went low carb and paleo and when I did, I felt amazing! My skin cleared, my depression (4 years in therapy), tingling in hands, gastro problems, you name it, cleared up and I have had nearly 1,5 years of health bliss. Oh, I forgot to mention I was led to gluten free and when I did it 100% my whole world changed.
However, I am now reading that NCGS is mostly in my head. Not just here, but everywhere that i have been riding on a placebo effect. I am expecting a negative result (no incidences of CD in my family) but have to get tested before I move forward. For now I have to eat tons of bread and what not and feel tired and gassy and just bad.
My question is, Is this result in my head? is it true that I am allergic to FODMAPs (that would be really bad then you couldn’t eat anything at all…grains, and sigh..watermelon?) or that I am simply being influenced by the masses on the gf bandwagon?
What are thoughts of any celiacs here and am confused if I get the all clear, to keep eating gluten despite how sick it makes me? I am someone who needs science and medicine back up to justify my choices. I just cannot feel free to do this and not feel like an idiot when eating gf because i am NOT a celiac.
I would really appreciate any insights.
My take: Listen to your body first. If you feel that much better eating gluten-free, then eat gluten-free, celiac diagnosis or not. Who cares what the naysayers say. Your health comes first.
HI Indee, Congratulations to you for ruling out the Celiac diagnosis since there are always medical exceptions as well as false negatives and positives. I was just at a medical conference yesterday on celiac. The presenter mentioned that the intestinal damage is mostly seen under the microscope, not through the endoscope, so be sure that the doc doing the procedure takes biopsies no matter what!
Also, go Gluten Dude. No one should eat anything that doesn’t make them feel good! No matter what the results of the endoscopy Indee, don’t eat the gluten if you feel bad. If you think it might be FODMAPs see a dietitian and sort it out for sure. It is worth figuring it all out!
Good luck!!
Hear Hear to that! Do what makes you feel best.
“I am someone who needs science and medicine back up to justify my choices.”
As someone that grew up in a household with a real life medical research scientist, my experience is that ‘the science’ is constantly evolving. Demanding absolute scientific certainty is chasing a chimera.
Isn’t there now a five part test for celiac?
http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/
Indee,
//…to keep eating gluten despite how sick it makes me?//
If foods that contain gluten make you sick, don’t eat them. Why on earth would you?
But be aware that it may be some other substance in those foods that is actually causing the problem. There is a lot of research yet to be done. It may be that if something contains gluten, there is a good probability that it contains the troublemaker. Or it could be gluten. But if it’s something else, then there could be some foods (beer, maybe?) that have gluten, but don’t cause problems for you. (But I wouldn’t bet on it.)
If low carb, paleo, and GF makes you feel better (and it sounds like it makes you feel a LOT better), then congratulations– you found a cure. Pat yourself on the back.
I agree with some of the comments here that say “if gluten-containing foods bother you, stop eating them…”
It bothers the heck out me that associates, strangers – (even doctors!!) and the media are telling me what to eat and not eat in terms of gluten. I can eat what is right for me, thank you very much. If hair loss, constipation, gum disease, tooth decay, asthma, depression, skin rashes, 40lb weight gain, and conjunctivitis are “cured” by eliminating gluten, yet my small intestine is unaffected, I don’t care what you say, i’m NOT eating gluten, and those symptoms are NOT in my head.
Why split hairs? If FODMAPS are in gluten, how the heck could you separate them out anyway? If you thought ordering GF was hard, try ordering non-FODMAP.
In addition, I have great compassion for the people who have IBS, or any derivative of that awful condition; and compassion for Celiac sufferers and NCGS’s as well. However, I get REALLY tired of NCGS being inexorably linked to IBS, or even “gurgley tummy”. NCGS is not just about the tummy alone, it’s about inflammation, and that damage occurs differently for different people.
Finally, I feel that Dr. Gibson did not do the gluten-suffering community any good with how he presented his findings. He could have been more clear in the presentation of findings without making conclusions.
I’m a little late here, but thank you! You said what I’ve been thinking for a long time!
I think there are many of us out there that never had gut symptoms yet suffered miserably from so many other things. The media and general public all seem to be lumping NCGS and IBS together all the time. And frankly, I always feel misunderstood when I order or buy GF products or mention my food intolerance.
Suffered 20 years from depression, headaches, psychological problems, joint pain, lethargy, memory loss, learning disability, fatigue, skin problems. No digestive issues. Negative anti-gliadin blood work twice 10 and 15 years ago. I was fortunate enough to know about gluten all the way back in the mid nineties, but was told by a celiac family member there was no way because “You would know…” (Implying IBS) So on I went, eating bread for 10 or 15 years longer than I should have.
Just please make sure to put gluten back in your diet before the biopsy. If you are eating gluten free, you will not get accurate results. You should eat gluten for at least 3 months before the biopsy, just eating a bagel two days before won’t do work.
Glad to hear you are feeling better! Listen to your body and take what others tell you in stride.
Oops, sorry for the double post! You shouldn’t eliminate all foods on the FODMAP. The acronym is for different things that might make you feel bad. I cannot eat garlic and onions but for me broccoli is fine. You have to test different foods on there and see how you feel after each one. It’s called an elimination diet. Try one of the letters in the FODMAP (there are books to tell you which foods fall under which thing). It’s backed up by scientists as a way to figure out what makes you feel good and what doesn’t (my mom has her Ph.D in food science and is a certified nutritionist… and she’s never wrong about anything).
So watermelon and apples don’t produce marble size cysts, dermatitis, severe depression (we’re talking 15 years for me) learning disabilities and numbing in my hands and feet. However, when I had my food panel done recently, I was ‘sensitive’ to a number of different foods, including watermelon and apples. Why? Because when you develop a leaky gut as a result of wheat and dairy damaging the lining of your intestines you have difficulties breaking down certain foods and if they enter the bloodstream in a way they are not supposed to the body attacks the unwanted food agent creating an antibody to it so it ‘appears’ you have ALL these food sensitivities, yet the only culprit is the wheat and dairy. My gluten and wheat sensitivities came back negative because I haven’t ingested any in over a year, so naturally my celiacs test for that also came back negative. Weirdly, I had to stop ingesting eggs too. I’m also sensitive to yeast, sugar, and coffee. (don’t know if those are natural sensitivities or if they developed over time) All I know is I didn’t feel better until I eliminated all of those foods, not because I’m sensitive to all of them, but because until my body could digest them again? I wouldn’t be able to eat them. This may be why some don’t get better on the GF diet, because there is still a weakened digestive tract that needs healing. If any one of those participants had even a mildly leaky gut that went undetected, it would appear that they have food sensitivities to a number of foods. The trick is to remove them from your diet and then re- introduce them 6wks later. If you have another food panel that comes back neg for those foods, you know it was a just a leaky gut and that gluten was definitely the culprit. I wouldn’t recommend introducing the gluten though, I would stay away from that. Probably dairy too. As far as I’m concerned? Celiacs could be like diabetes. Maybe you’re not born with it, but who’s to say you can’t develop it over time?
Has anyone seen the documentary “What’s Up With Wheat?”
Sorry responding to your comment years later, I’m just now seeing this amazing website.
Thank god for IBS. What would the industry/profession do without that catchall handle?
There’s the “trend”, there’s celiac and there’s the “can’t figure this out”. There is NO question for so many people that they cannot ingest gluten. Figuring out what you can eat on a daily basis is, at times. exhausting and confusing. Now this.
Know your body, listen to your body and eat to heal yourself.
He makes a lot of sense. I never really questioned the study itself, I just wish the results hadn’t actually been published – or at least given to the media – until there was a better understanding. Studies like this happen every day with the results getting little or no attention whatsoever. It’s very unfortunate for those who are NCGS that it did get so much attention. Especially when everyone involved acknowledges that understanding is still very limited at this point.
I still see a dramatic rise in celiac diagnosis and testing on the way when the cross-contamination drug gets approved. It’ll be a double edged sword, but I suppose it’ll be worth it. More people will be tested and diagnosed and hopefully more money will go into research. It’s certainly not the way I’d like to see us get there, but progress is still progress. 🙂
Progress is a good thing…so is hope.
A low FODMAP diet is recommended for Small Intestine Bacterial Overgrowth (SIBO) – if you find that diet helps consider getting tested for SIBO.
The study makes sense in that context and nowhere did anyone but the media day ‘it’s all in your head’. We know our bodies better than anyone. We’d all be better served to ignore mass media and keep our lives simple.
Everyone here go and share the time article with all your Facebook and Twitter followers. Let’s do what we can.
http://time.com/3511235/gluten-free-celiac-disease/?xid=newsletter-brief
From what I understand about FODMAPS, wheat, barley and rye fall under “high FODMAPS,” so they would be cut out of a low FODMAPS diet anyway.
So, it sounds to me like the study is really confirming that a wheat/barley/rye free diet is not enough for some people.
What the headlines should read is:
“Cutting out wheat may be the least of your worries”
It is amusing to me that people who were using this study to decry a restrictive diet were, in essence, promoting an even more restrictive diet.
Amen to that
I truly agree. I would rather just have to cut out gluten than 50 other foods as well, including wonderful fruits. I could go around and dissect every part of my diet but I would starve to death at some point when gf at the moment truly works for me. It could be some other part of the grain, but then you can’t order that at a restaurant or find it on a food label. It’s best to just go gf for now and for the rest, if it causes distress, eliminate it. People scream and shout about “shady and faddy” diets, but then again, they aren’t having dinner with me and quite often, I swear, some of them have been diagnosed with type II diabetes and have to survive on meds they are lucky their insurance covers. I think I like it where I am and after some days of allowing the worry of rolling eyes to roll off my back…I will be healthier for it.
IBS is probably just another word for leaky gut. Of course you develop ‘sensitivities’ to number of foods when you have that, because you can’t digest anything properly. Doesn’t mean they are the culprit. This study didn’t make any sense to me.
I don’t dislike the study or the messenger. What I intensely dislike is the media jumping on it giving the clear for all non-Celiacs to go devour a loaf of bread because “it’s all in their head”. I think the study did show that the inflammation and distress is not in their heads..just a confusion as to what part of wheat caused it. Whether you are having to cut out the protein gluten or the FODMAPS in wheat, isn’t the recommended diet pretty much the same? How can you cutout the FODMAPS in wheat and not be basically gluten-free at the same time unless you are a huge barley/rye consumer? What part of this study gave the all clear for wheat (according to the media) unless you have Celiac Disease? ‘Splain it to me, Lucy.
It honestly took me until reading the comments to understand that this was the takehome point. “It’s not the gluten, it’s the wheat/barley/rye.” Ok…good to know. So I’ll just avoid everything with wheat/barley/rye; i.e., all things gluten-free. WTF??
Well here’s proof that IBS really exists, at least. Those of us with gurgly bellies might be experiencing this excess fluid production in response to gut irritants. http://sciencenordic.com/first-image-irritable-bowel
I think it is great that research is being done to put some clarity on the issue of NCGS because it is not Celiac Disease. People with gut problems can cut out foods with gluten and feel better, but those same foods, as the research shows, have other components to them that could actually be the cause of their belly discomfort. As for the media jumping on it and coming to the wrong conclusion about the study, what else is new? Media is mostly sensationalism, anymore. Maybe gut issues are, at least partially, due to the way food is grown now? You have to admit, the food of today has been made very difficult to destroy. Insects can’t eat it without dying, weed killer doesn’t kill it, seeds have been made tolerant of drought and flooding, their genetics changed either by radiated forced mutations or by genetic alteration in the lab. The stuff lasts a really long time from farm to store compared to food from 50 years ago. Organic fruits and vegetables don’t last near as long as their non organic counterparts. Hmmm … Maybe making the food so difficult to destroy has also made it more difficult for our digestive system to digest it? Now, if we could get the research funded by independent funding sources who have nothing to gain from the outcomes, that would be even better. Not saying this study was influenced. Just saying research seems more credible to the general public when funded independent of possible gain from results. Unless you are employed by the media … then any research is worth a good headline.
I am not a scientist but I have plowed through many a journal article over the years (thank you, PubMed) and see a lot of CD research focusing on ever more finite components of gluten. The problem I see is that instead of helping the patients, this usually leads to more restrictive tests. As someone with multiple autoimmune issues, I experienced this a lot with thyroid treatment. That community calls it the tyranny of the test. There will always be people who don’t get treatment unless a doctor looks away from the lab report and at the person as a whole – and there aren’t many of those around.
The FODMAP thing is probably important, especially for people who don’t recover enough just going gluten-free but I do fault the doctor for basically washing his hands of how his study was interpreted. Words are powerful.
Well, not really sure what to think, it really bothers me how the media took it as a “See there’s no such thing as Gluten Sensitivity!” And that was the end of that. Everytime I see an article about gluten and people make comments about it being a fad or made up I want to scream! Oh yeah? Tell that to the person who just spent the night curled around the toilet because they got glutened.
I am undiagnosed,(went GF before ever thinking I could have celiac) but I can say looking at the list of FODMAPs – the only thing I eliminated was wheat, rye and barley (aka gluten containing foods) and my symptoms stopped. If I eat something specifically gluten, I get sick. I do have the celiac gene and it is possible that I have celiac disease, and at this point that is what I say to people, mainly because of the perception thanks to the reaction to this study. I’m pretty sure the ability to have atomic farts was NOT all in my head.
“Atomic farts” that’s what I do to. Lol. Gotta love it. Makes my hubby chuckle at me. I went gf 2 months ago. I have no cd dx but when I went gf I totally changed. I do know fructans are my enemy. When I eat food with it sounds like world war 2 in my gut. Not very pleasant. I don’t know what I have docs either. I just gave up on them and took matters in my own hands. The media is controlled by pharma and food business. I just ignore and go on. Only about an 1/8 is true anyway. It will take a high powered person to become sick with cd before it will be heard truthfully. It’s a shame though.
This has become a world without a lot of empathy. I don’t know what happened to our culture where it’s now easier to make fun of something you don’t understand instead of trying to understand it and empathize a bit. I lose a little bit of faith in humanity each and every day.
My gastroenterologist believes that NCGS is just a precursor to full-blown CD. He says there are studies that support this belief. He believes that persons with gluten sensitivities (with failed blood tests and/or biopsies) who continue to eat gluten in spite of their body’s reaction to it, will test positive for CD in a blood test and/or show damaged villi in the future.
That makes much sense.
It’s ironic that in a world where pre-diabetes and pre-hypertension get so much publicity, CD is one where no one will take you seriously until you eat yourself into an extremely dangerous health situation.
I do worry that having these terrible reactions to gluten/grains will affect me years down the line, too. Science is iffy at the moment, but my grandmother and her two sisters had crippling rhuemathoid arthritis, one paird with macular degeneration and a brother with vitiligo. I wonder how that could be all in one group of 5 siblings and have it not be related to SOMETHING. My grandmother also had lifelong battles with migraines and stomach woes that ended up in colon cancer and an inflamed stomach lining. Well, the doctors then (about 15-20 years ago) said it was just the luck of the draw and that everyone will encounter these ailements as they get older.
Even if my celiac tests come back negative, I am not going back to gluten foods. Ever. I mean, wouldn’t it be a treat to have your doctors tell you in 10 years that “you were right, we were wrong”. And gf diet is really wonderful, plentiful, and so cleansing when you avoid all the processed junk. I started with the processed junk and my most of problems disappeared but to take it to another healthier level, it is the bomb and worth all the effort.
What I find fascinating, is seeing the massive drive of corporations rushing their highly-processed, high fat, sugar and salt laden, nutritionally inadequate GF Frankenfood to market, being driven in large part by people who have self-diagnosed NCGS. The reason the GF diet was so healthy, until now, was the unavailability of these very products. Sure, a wider variety of GF staples is great, but many of these inferior products are better left on the shelf with their exorbitant price tags. (Dedicated bakeries to high quality baked goods such as those found at Jennifer’s Way are of course, the exception.)
Certainly, countless people claim they feel better when they eat GF, but it may yet prove to be an issue with FODMAPS, and although the GF diet might still be an acceptable form of treatment for conditions other than CD, I think most people deserve to know what ails them based on sound medical evidence.
Ultimately, we don’t know the long term implications of people treating unspecified conditions that are non-celiac using a GF diet. The GF diet might prove to be nothing more than a compliment to other, more beneficial forms of treatment.
Another serious consideration with the GF trend relates to those who advocate loudly against being tested for celiac disease because they themselves have opted against the odyssey of obtaining a proper diagnosis – some I’m sure, are afraid that a negative test result will mean they no longer belong to the exclusive celiac community. Their unwillingness to be tested is understandable of course, because this community is about the only place they will find validation and support for their GF lifestyle.
But, when greedy corporations, not medical scientists, dictate to the masses the benefits of a GF diet, which might prove to be a myth, a safe way forward for sufferers with an unspecified diagnosis will certainly not be easy. What we have on our hands, is a convoluted mess.
Colette Sullivan-Ledoux
Most corporations care about one thing above all…not saying what it i$ but I’m $ure you can take a gue$$
I $ure can take a guess Gluten Dude!
When corporations drive a movement with their enticing wares for profit, it becomes a monumental problem for people trying to sort whether it might solve a bonafide problem that medical science cannot provide answers to.
I can’t thank you enough for your dedicated commitment to the celiac community.
I hope Mrs. Dude is recovering smashingly well, and the Dudettes are free to be just that – proud young Dudettes – with amazing, and healthy, parents.
Take care, all of you, and thanks for your response!
Colette Sullivan-Ledoux
Thanks. Fact is…I wish I could respond to every comment people leave. I’m so appreciative…but I’m also so busy. It’s always good to connect with my fellow gfree’ers.
Jimmy Buffet needs to write a song about gfree’ers.
Interesting read these 2 articles in regard to articles that talk about Dr. Peter Gibson and Monash University in Australia that says Gluten Intolerance is FALSE. They seem to have a different take on the whole matter.
1. http://www.iflmadscientist.com/2014/05/18/non-celiac-gluten-sensitivity-and-bad-studies-promoted-by-ifls/
2. http://www.glutenfreegigi.com/is-gluten-sensitivity-real/
Last one is from the Founder and Director of the Celiac Research Center in Massachusetts who also has a take on Dr. Peter Gibson & the Monash University in Australia study that Non Celiac Gluten Intolerance does not exist
3. http://www.glutenfreeschool.com/2014/05/20/alessio-fasano-gluten-freedom/
By avoiding FODMAPs, wouldn’t a person still be avoiding wheat, barley, and rye, in addition to many more foods?? Do the naysayers know I will potentially be even more annoying to them if I start following a low FODMAP diet? This point seems to be overlooked.
I don’t think low FODMAP would cause as much concern about trace amounts and avoiding trace amounts is where celiacs and people who are sensitive to gluten have to get the fine details right when ordering something. By the way, this study only looked at bowel symptoms. Those of us who experience joint pain and brain fog and, over time, the effects of high cortisol, were not included so we’re still stuck trying to be finicky about gluten while the world rolls its eyes and there are that many more people who believe what we don’t know about the food won’t hurt us.
The study did produce depression for some of the NCGS, which indicates to me that there is a connection. The author sidestepped that one though by pushing it off for another study.
I know! It’s like saying, “You aren’t allergic to cat hair, silly. If anything, you’re allergic to cat *saliva.* Stop being so suggestible.”
Amen to the depression connection, too–you’d think that would be of interest to somebody out there. I’ve only had minor physical complaints, but major mental ones. Struggled in vain for almost 20 years and then suddenly felt “all better” on the GF diet. I would have been intensely skeptical, except all my lifelong OCD-like skepticism had mellowed into, “Whatever…it’s working. Let’s do it some more.” If life is better when you avoid gluteny foods, then avoid gluteny foods. It’s not that mystical or heretical.
Wish you could have asked Dr. Gibson about the latest news on the Low FODMAP diet.
This article says that unless you have IBS you should avoid the Low FODMAP diet because it could hurt good bacteria
http://www.6minutes.com.au/news/latest-news/healthy-people-should-avoid-low-fodmap-diet
The higher FODMAP intake of a typical Australian diet stimulated the growth of helpful bacterial groups, while the low-FODMAP diet reduced total bacterial abundance by an average of 47%.
Your gastroenterologist believes BS.
Studies?!?
There are holes in most research and barely any can be proven 100% factually due to the nature of research and living creatures. This was a great example of insightful research that is very flawed. It doesn’t seem to satisfy anything actionable in fact I’m not clear on what the overall recommendation would be going forward from this doctor, except a lot of maybes. The truth remains the same, going gluten-free (like our ancestors) is a good lifestyle choice if you balance it and watch to be sure you’re steadily eating nutrient dense and being active. Other than that, life kicks everyone in the ass. I choose gluten-free for not only myself as a Celiac, but everyone on the planet because it clearly makes sense to avoid wheat and other gluten containing proteins and I’ve been a health, active, sportsman who can perform at a high level. Eat that.
And now there’s new research that says non-celiac gluten sensitivity exists: http://www.ncbi.nlm.nih.gov/pubmed/25701700
I just came here specifically to post about this study, Ana, but it looks like you beat me to it. Here’s an article (link below, headline: “You CAN be sensitive to gluten without having coeliac disease, study finds”) about that study that appeared in the UK press earlier this week:
http://www.dailymail.co.uk/health/article-2975646/You-sensitive-gluten-without-having-coeliac-disease-study-finds.html
They erroneously attributed the study to “researchers from the National Institute for Health in the US” (possibly because the paper appeared on the nih.gov website), whereas the authors are in fact all affiliated with medical research institutions in Italy. Otherwise it looks like they got things straight, from comparing the DM article with the NIH link.
Now here’s where things get interesting… remember “Real Clear Science”? That’s the web site that in May 2014 gave the first popular press report on the Gibson study that GD describes in the OP (which came about a year after its initial publication in 2013), after which the rest of the media ran with it. Now RCS is back again to comment on this new Italian study and they claim it offers NO proof that NCGS exists; they even take the above DM article to task over how they reported on it:
http://www.realclearscience.com/blog/2015/03/gluten_sensitivity_has_not_just_been_proven.html
Specifically, RCS addresses the contents of the FULL report. Unfortunately this is paywalled as per the usual practices of academic peer-reviewed journals; what’s in the NIH link is only the abstract portion, which is just a non-paywalled summary that omits a lot of the details. RCS tells us that of the 59 patients who completed the trials forming the study, all but nine of them, upon ingesting the rice placebo, experienced symptoms equally bad as, or worse than, those encountered from the actual gluten dose. So, RCS contends that even if NCGS is real, most of those claiming to suffer from it have no such affliction and that it is far less prevalent than conventionally believed.
But if this is the case, why do the researchers write in their conclusions: “In a cross-over trial of subjects with suspected NCGS, the severity of overall symptoms increased significantly during 1 week of intake of small amounts of gluten, compared with placebo”?
This doesn’t add up.