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”
Yet Time Magazine just published an article titled “The Rise of Celiac Disease Still Stumps Scientists”.
Gee…I wonder which will get more press.