While the scientific community has widely accepted celiac disease as a condition caused by gluten and other related proteins, non-celiac gluten sensitivity has remained a topic of heated debate in the media and among the general public.
In this article, I’ll talk about the reasons I have acknowledged non-celiac wheat sensitivity as a real condition for many years, and I’ll describe the results of a new research study performed at Columbia University that adds supportive evidence. Before we jump in, though, let’s review the difference between celiac disease and non-celiac wheat/gluten sensitivity.
Celiac Disease vs. Non-Celiac Wheat Sensitivity
Celiac disease and non-celiac wheat sensitivity are two distinct conditions, with a few major differences.
Celiac disease (CD) is an autoimmune disease characterized by an inflammatory immune response to wheat gluten, rye, barley, and related proteins. It results in marked disruption of normal gut tissue structure, including atrophy of epithelial cell projections called villi and an enlargement of intestinal crypts where new epithelial cells form from stem cells. CD is strongly associated with the haplotypes DQ2 and DQ8 of the HLA gene (1). In terms of blood markers, transglutaminase 2 (TG2) autoantibody is considered the most sensitive marker for celiac disease (2).
Non-celiac wheat sensitivity (NCWS, and also called non-celiac gluten sensitivity) is a term applied to individuals who experience symptoms in response to wheat or gluten ingestion but lack the characteristic markers of celiac disease. Symptoms can range from GI discomfort to fatigue and other neurological issues. These people tend to improve on a gluten-free diet (3). Unfortunately, many are mocked or ridiculed for avoiding wheat and told that their sensitivity is “all in their head.”
New research confirms gluten intolerance is real—and the haters are wrong.
Wheat Sensitivity: Is It All in Your Head?
In response to continued suggestion by the media and some of the medical community that wheat sensitivity is merely psychological, I have written extensively on my blog in support of NCWS as a real condition. For one thing, a variety of different proteins in wheat can elicit an immune response beyond gluten. NCWS might even be more serious than celiac disease, as many people who test negative for celiac disease continue to eat wheat and put themselves at serious risk for developing autoimmunity.
However, as I addressed in a previous article, the researchers chose whey protein for their control group, a pretty poor choice considering that many of their subjects likely had inflamed guts and multiple food sensitivities. The evidence, both on paper and from my own clinical experience, clearly points to the existence of NCWS.
The Latest Research Study
Still not convinced? In a recent study, researchers at Columbia University Medical Center sought to obtain objective evidence to determine if NCWS is real (4). They enrolled 80 individuals with self-reported non-celiac wheat sensitivity (NCWS), 40 individuals with celiac disease, and 40 healthy subjects for the study. NCWS patients were excluded if they showed any of the characteristic diagnostic markers of celiac disease (celiac-specific IgA, anti-TG2 autoantibody, or celiac-like histology).
The researchers took blood samples and intestinal biopsies from all 160 patients. The blood samples were used to look for particular signaling molecules and proteins in the blood, while the biopsies were used for histological analysis of the tissue microstructure. In addition to comparing these measures between conditions, they also took a subset of 20 NCWS patients who had adhered to a gluten-free diet for six months and compared their blood and biopsy samples before and after gluten avoidance.
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Gluten-Sensitive Individuals Have Leaky Gut
This is not really all that surprising, since we know that gliadin, a component of gluten, can affect tight junction proteins (5).
In addition, subjects in the NCWS group had systemic immune activation. Serum levels of both lipopolysaccharide-binding protein (LBP) and sCD14 were significantly elevated in individuals with NCWS in comparison with individuals with celiac disease and healthy controls. These are sensitive markers of microbial translocation. In other words, they indicate that bacteria and other microbes from the gut interior are “leaking” into the bloodstream, inducing a low-grade, chronic inflammatory response from the immune system (6).
Histological analysis of biopsy tissues showed that the NCWS group also had epithelial cell damage similar to the celiac disease group, a result supported by elevated levels of serum marker FABP2 (7). Moreover, in the subset of NCWS individuals analyzed before and after adherence to a gluten-free diet, they found that inflammation and cell damage markers improved significantly after six months of gluten avoidance.
Gluten Sensitivity Exists—Here’s How to Know If You Might Have It
Evidently, there are certain individuals who possess non-celiac wheat sensitivity and would benefit greatly from avoiding wheat. It’s unfortunate that so many people who might benefit from a gluten-free diet never try it or don’t stick with it because of the lack of support from media, the medical community, and the general populace. I hope that this new research study (and others that will surely follow) will make it just a bit easier for people to make the right choice for their health.
So how can you know if you have NCWS? The biological markers used in this particular study may be used in the future to help diagnose NCWS, but at the moment, they are purely used for research purposes. Nevertheless, there are two ways to determine your gluten tolerance:
- A Cyrex panel: Cyrex Array 3 is a panel that tests your potential for wheat and gluten protein reactivity and autoimmunity. It must be ordered by a healthcare practitioner.
- A self-experiment: Eliminate gluten from your diet for 60 days and then perform a gluten challenge, taking careful note of any symptoms. I still hold that this is the best way to determine your tolerance for gluten.
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I have autoimmune diseases including hashimotos and lupus. I went totally off gluten for three months and then added it back. Can’t tell any difference. I also went off dairy. When I added it back in my hands started trembling – a symptom that I previously had and had gone away. I keep reading about the gluten and so I limit it to a once week.
I had been diagnosed with moderately severe arthritis in my hands, feet, knees, hips and spine, which no amount of nsaids or other medication really helped. I discovered, after not eating any wheat-containing products and severely curtailing my sugar use (just for two days), that my pain was almost gone. I experimented — I didn’t eat any wheat and very little sugar for a week, and my pain totally disappeared. At the end of this period, I ate a piece of bread but kept the amount of sugar the same as during the one-week period. Not immediately, but the next morning I noticed my knees hurt a bit. I slowly increased the amount of wheat day-by-day, and the pain got worse and worse, until it felt as bad as it had before I stopped the wheat. I did a bit more experimenting, this time with no wheat but increasing the sugar. The sugar had a bad effect, but not nearly as bad as the wheat. Since I could maintain my low sugar consumption (it’s very little) with no pain, I continue my no-wheat, very low sugar lifestyle and remain pain-free. When I mentioned this to the doctors and nurses during my recent e.r. visit, they all assumed I had a gluten sensitivity, so at least in my small town, most (if not all) of the doctors and nurses KNOW it exists.
Two Thumbs Up for taking charge of your health !!!
Thank you! We can control our bodies so much more than we know.
When you say “low sugar” do you mean low added sugar (as in cane sugar, honey, maple syrup)? Or no fruit or other foods that contain naturally occurring sugar? Just wondering because I eliminated gluten a month ago because I have Hashimoto’s and I don’t consume any dairy except one plain Greek yogurt daily (and I take special enzymes just in case to help digest it). I haven’t noticed any change in my pain levels (40 years old and have lived in constant pain for 3 years now). But I do eat plenty of raw fruit, and some veggies that contain sugar, such as carrots. I haven’t tried eliminating these because, ultimately, I think I’d rather live with some physical pain than the emotional pain of having such a severely restrictive diet! Reading your post though, I became curious as to which sort of sugar you’ve limited. Thanks! And kudos to you for your discipline!!
Thank you! It’s added sugar – very little in my coffee. I can’t eat any fruit that has a peel due to pain it causes in my stomach, but I do eat berries. I’m allergic to certain plants, so some veggies are out, although I love green beans and peas (beans!). I do have a very limited diet, but my joints certainly thank me. I was diagnosed with the OA 30 years ago, and I had bouts of depression due to not being able to do much because of the pain. It may not be worth it to some people — I thought long and hard about it during my testing — but it will be to some. The longer I’m without my favorite foods (sweets and wheat flour), the easier it becomes, but once in a while the want overcomes the shouldn’t, and I make a conscious decision to deal with the pain. I do the same with foods I’m allergic to (eggs, corn, shellfish, milk and cod) that cause totally different problems.
I have had a similar condition. I found that eliminating foods with neuro-stimulating effects solved the problem. These include anything high-glutamate or taste enhancing: MSG, maltodexterin, sea salt, asparatame, etc.
Good for you! Those of us who know what causes our problems with foods/additives are very fortunate. Most people go through life never knowing their favorite foods are causing them so much trouble.
In a research paper in Pubmed consumption of a diet without goitrogens or fruit and low carb lowered auto-antibodies by 40% in an autoimmune condition. So with my Hashi’s I’ve really cut back on sweets and deserts and maybe this info is useful for you also.
Chris, thank you for all your work, your research is very valuable. However, researching gluten topic we need to address this health issue from all the angles. I have been eating gluten products with no complications till I arrived to U.S. After short time being here and eating gluten products here, I developed GI issues. My take on gluten now is slightly different than yours. In Europe, where I was raised, we didn’t have glyphosate being sprayed before harvest of our grains, we didn’t have bleached flour. Would be possible that in majority (not all) of this problems chemicals are the root, causing those health issues?
Jan,
It may not just be the agricultural chemicals, but also the fact that the molecular structure of wheat in the U.S. has been drastically altered. It has been hybridized into over 34,000 varieties within a few decades. Notably the gliadin protein increased in amount tremendously, which can cause difficulty in digestion, inflammation, and preclude “leaky gut”. I have just been advising U.S. wheat is just not the same as elsewhere for so many reasons you can’t even count, so it’s best to just avoid it. It’s playing with fire and as a precaution if “symptom” free or not, stay away as it will likely eventually cause problems.
The fact that glyphosate, antibiotics etc. may WORSEN the gluten related issues, doesn’t make “ancient” grains a species appropriate food.
Diseases of civilization started 10ky ago with the advent of agriculture, you can read it on “paleopathologies at the origin of agriculture”, and traditional cultures who ate grains perfectly knew about their toxicity, indeed they sprouted and fermented them to reduce phytates and other nasty stuff, also partially degratating gluten…
Nevertheless, it doesn’t make grains a human food that makes us thrive.
Dwarf gliadin laden wheat with plenty of roundup can only worsen the issue, but it starts from grain themselves.
Several years ago a natural health doctor had me do a stool test which showed high levels of a gliadin response which he told me meant that I was gluten sensitive. I cut out all grains for a year and a half (this was before it was talked about mainstream and was very difficult!). I did feel better energy wise but still had issues like I had a food allergy but nothing was showing in tears that I did. This year I tried the ketogenic diet and finally because of eliminating all sugar and going low carb while eating a lot more healthy fats did I stop having autoimmune symptoms and I easily lost 22 lbs. I previously lost my appendix at age 12 and my gallbladder at age 31, both of which I read can be attributed to autoimmune disease and gluten intolerances! I don’t have any more organs I want to lose!
Gallbladder removal in all but the most EXTREME cases should be criminal…
I agree, i believe what my doctor said was a gallstone problem years ago was really the beginning if gluten sensitivity. Had I known then what I know now…
I have heard there is an auto immune version of Paleo you can look it up on Google. It would not be as restrictive as the Ketogenic diet and may yield the same benefits . I know that people with epilepsy that benefit from a Ketogenic diet often show just as much relief on the Paleo diet. You could try cutting out the fructose on a Paleo and adding more of the healthy fats.
Thirty-four (34) years ago, at the age of 30, I was told by a savvy chiropractor that my chronic sore throat and bad breath might be the result of an allergy to wheat or dairy. I’d never heard of a food allergy. But after a year of going to doctors and having a million tests, I was ready to take her advice and eliminate wheat and dairy one at a time to see what would happen. Voila! Wheat was the culprit. I didn’t know about gluten but over time I noticed that I didn’t feel well when I ate rye or barley either, so I gave them up.
Then I felt way better, but still had health issues. Not until I went on the Paleo diet did most of them clear up, and I’m addressing the remnants by working with functional medicine and treating a SIBO that I’ve had, possibly for the entire time.
My advice is to trust your body. You know how you feel. Don’t let doctors tell you it’s all in your mind. There’s no such thing. The mind is in the body and vice-versa. Fix one, you fix the other, as long as you pay attention to both.
What do you take for SIBO?
The treatment is multifactorial with the most important aspect of treatment being diet. The test is for it is a breath test but a trial of of SIBO diet can help you decide whether to pursue the diagnosis. Chris has multiple blogs and podcasts including one with him and Mark Pimentel, one of the top researchers in SIBO. On siboinfo.com, there is a good chart for diet.
When I met my husband, I always complained about certain symptoms. His family ate paleo and all gluten-free, so I learned mostly from their eating habits. I LOVED my peanut butter sandwiches but couldn’t figure out why my joints always hurt, I was ALWAYS tired, and I felt foggy. I cut gluten out 90% of my diet and now I mostly eat 95% gluten free with some cheats. It’s amazing the difference I feel when I’m consistent and how crappy I feel the next day after a cheat. #paleoforlife
I’m a firm believer in non-celiac gluten sensitivity. Thank you Chris for this article supporting the reality of that! However…Any of you heard of such a thing as feeling better on less, not no, gluten?! That would be me…. Three years ago I couldn’t eat – felt very hungry even if I stuffed myself full every chance I got and lost about 20 pounds making me 30 pounds underweight (and I’m little!) It finally got to a point where I was admitted into a hospital for a week of GI testing, and one thing I know was checked for was celiac and hypo-thyroid, both negative. But I did have signs of a immune response/inflammation in my small intestines, so my gastroentrologist suggested that I go gluten-free and dairy-free to see if that helped. I followed that diet strictly for 6 months and continued losing weight…:( Eventually I reintroduced dairy, but now I add lactase enzymes drops to each new bottle of milk. No problem at all. I continued to have diarrhea though and was never satisfied at what I ate. All a dietitian suggested was that I eat more or make my portions a little larger, but I tell you, I already was eating a lot! One day I went down to eat dinner in a cafeteria (I live in a senior citizens’ building (young myself tho, in mid-twenties) and this day I was particularly feeling not up to cooking dinner…And had forgotten that night the menu was mostacolli – FULL of gluten and cheese. Well, I ate it anyway, and instantly my stomach settled and stools became formed, to my astonishment! From then on I carefully reintroduced gluten, and found that if I eat too much my symptoms with unsatiable hunger will recur, but if I eat none my stools become liquid. Finding a happy medium has been the answer for me. I do not buy gluten-containing products for my own kitchen and if I am staying with others for more than 2 or 3 days I will ask them to use gluten-free as well. But when I eat an occasional meal out or attend a gathering, I eat whatever with no reservations. Since doing this, I have felt MUCH better in GI and have gained 20 pounds back. But never heard of such a thing…;)
I have suffered with diarrhoea for 40 years that got worse last year and the beginning of this one. Got to a point that I hardly dared to go out unless I knew there were toilets nearby. Some bouts would last half a day and left me weak and ill. After a colon scan which came back clear I researched ways to help myself as no medical help was offered for my problem and pain. I chose the Zoé Harcombe low carb high fat diet, as it was UK orientated for foods. I had almost immediate cessation of my gut problem. After five weeks I went on vacation and two days running ate bread rolls. Third day I was back in the bathroom violently ill. I have not eaten carbs since and after getting better again I have been diarrhoea free for four months. I have now come to my own way of eating which is possibly Keto as I eat very few carbs. Pain in the intestines is lessened but get some at times. Everybody remarks on how well I look. I am 81 and so glad of the internet or I could still be ill. I just want to tell every on, give up carbs!
Hear hear. Congratulations on going Keto.
You’re history of diarrhea points to gluten intolerance above dysbiosis from carbs.
You may appreciate 2 Keto Dudes, especially their first 3 episodes. They are not ‘gluten free’ merely ‘cope’ better like many other ‘good’ diets.
My journey has been a long and painful one that has spanned 40 years of struggle with familial digestive problems including IBS. The medical community has tried to label my symptoms as “in my head”, and seven years ago a new gastroenterologist said to me “now that I’ve listened to your wastebasket list of symptoms, tell me what I should do for you”. I’ve always suspected food intolerances, and decided that I was tired of the disrespect of the mainstream medical community, and to research what I could do to help myself. Having professionals shame you is not helpful when you are feeling sick, having bouts of vomiting, diarrhea, and cramping gut all at the same time. Feeling like I have the flu on a regular basis, because I’ve eaten the wrong thing, is not the way I want to live my life. I’ve been on every medication, PP Inhibitors, antibiotics, head meds, you name it. I finally decided to take my health into my own hands. I have been treated for h-pylori, so I suspected that along with food sensitivities, I may have an overgrowth bacteria problem, of which I’ve also have been treated. I have intolerances to most prescribed drugs, as they throw me into feeling sick or depressed. Like many others who have real symptoms and digestive issues, if mainstream testing doesn’t show a health issue, they don’t know how to treat you. What I’ve discovered is eliminating soy, fruit sugars, and dairy have helped tremendously. I’ve switched to organic, no preservatives, no processed foods, all oils other than olive, and gluten free products (most of the time). I can see such a big difference in the way I feel, and now I have the confidence to control how I’m addressing my health. The mainstream medical community needs to wake up and stop being so textbook when treating patients – we are dealing with environmental, as well as food issues that impact our very being. How about a little kindness and compassion too?
I was wondering if the gluten sensitivity test would be valid if it was performed after being grain and wheat free for 4 months? I had the blood test drawn the other day and am waiting on the results. Just wondering if you need to be consuming gluten at the time for it to be accurate. I don’t have any of the classic systems of gluten intolerance, I just have become a believer of the wheat belly / grain brain program.
Interesting information. I did an elimination diet trial 25 years ago and reacted strongly to wheat. Not believing it could be true, I resume eating wheat (the reaction is muted when you eat it daily) and did another elimination trial a couple weeks later with the same reaction. Both times I accidentally ate wheat so really wasn’t even thinking about having a reaction. However, I still have leaky gut, which I suppose is due to having been diagnosed with Lyme disease about 6 years ago following decades of phony diagnoses. There may be other infections as well. I would be interested in a column about the least expensive way to prove that I have leaky gut and how to manage it without drugs.
I have the highest Celiac gene that most actual celiacs have and have all the symptoms and morbidities of celiac disease but still tested negative.
I have SIBO though and a slew of food allergies, plus thyroid disease. My daughter has Hashimotos.
Same here. I’m HLA-DQ2.5 homozygous. As far as I know, no thyroid issues. But when I eat gluten, I get endometriosis, arthritis, and seizures/migraines. Been tested for celiac twice (separated by ten years). Finally did a gluten challenge in the fall of 2015 with an endoscopy. No celiac.
Before I went GF four years ago, I had a terrible acid reflux condition with a hiatal hernia. It was so bad, I was prescribed TWO nexium per day…and it still didn’t help. I went GF because of an autoimmune skin condition (which didn’t clear up, unfortunately), but what I noticed was remarkable. I’d been on a roll working out to “Insanity” at that time. I had gone from a size 10 to a size 4 in just two weeks! But I’d lost only 5 pounds during that time. That could only have been inflammation. But more importantly, all my stomach issues had gone away. I can eat tomatoes, salsa, lemon juice, orange juice…all the foods they tell you to avoid when you have acid reflux…and I don’t have a problem with my stomach. But what I really notice now is that whenever I get “accidently glutened” or GMO-corned, I get sick as a dog for two days. I mean, I am down for the count unable to lift my head for TWO DAYS. And of course, I tested negative for Celiac.
No, no, no…there’s not such thing as gluten sensitivity, right?
I am a long-time Crohn’s patient who has had 3 re-sections. At age 12, my daughter developed not only various food allergies but also schizophrenia. I took her to a psychiatrist who immediately wanted to put her on a strong anti-psychotic drug. Instead, I had her go gluten free. I kid you not, within 2.5 days of being gluten free, her schizophrenia went completely away. She is now 15. Neither of us is celiac.
Very enlightening article! My doctor told me I don’t have Celiac Disease but I experience some of the symptoms (and sometimes they are severe) with ramdon foods. When I have a reaction I stay away of that type of food. I do have a mild fatty liver, but I wonder if NCWS night be the cause of some of my symptoms?
I think dairy sensitivity is also huge and is not being looked at!
Leaky gut = dairy intolerence
One thing that would be great is for the Functional world to have clear and concise definitions and more meaningful terms for “sensitivity” and “intolerance”. I don’t see the same definitions in all of my resources, and the word “sensitivity” really doesn’t denote the seriousness of the situation. In fact, “intolerance” sounds much more serious than “sensitivity”. Unfortunate, as I assume that is adding to the overall misunderstanding of these problems in the general population.
Even the term “tolerance” hides something deeper. Do you “tolerate” your partner or you love it?
It’s the difference between surviving and thriving…
Thank you, Chris. Good article.
This highlights a common problem in science and medicine once the object of ridicule in a Monty Python skit entitled “The Only Reason”. The presenter makes a firm assert that the only reason is….. to be repeatedly interrupted by a member of the audience with “but what about…The presenter starts over with “the only two reasons….”. Once again interrupted and starting over with ” the only three reasons….”, continuing to a fade out. Finding one reason has no influence upon whether there are more reasons so why do science professionals keep doing it. Fifty reasons do not reduce the probability of a fiftyfirst.
I’d like to know what to do about “leaky gut.” I’ve just purchased the prebiotic Bimuno, from England, based on research like this: http://www.ncbi.nlm.nih.gov/pubmed/27523186
Does anyone have any experience with it?