I previously wrote an article called “Is Gluten Sensitivity Real” which critiqued a spate of news reports suggesting that nonceliac gluten sensitivity (NCGS) doesn’t exist. These news stories referred to a study indicating that some people who believed they were reacting to gluten were actually reacting to a class of poorly absorbed carbohydrates (which include wheat, among many other foods) called FODMAPs.
You can read the full article above for details, but the takeaway was that the study those stories were based on in no way disproved the existence of NCGS, nor did it overturn the large body of evidence that links it to a variety of health problems ranging from type 1 diabetes, to allergies, to schizophrenia, to autism spectrum disorders. There is little doubt among those who are familiar with the scientific literature that NCGS is a real condition.
Yet despite this, we continue to see headlines in the media like this:
- Time for Some Grains of Truth About Gluten
- Eat More Gluten: The Diet Fad Must Die
- Why We’re Wasting Billions on Gluten-Free Food
These stories—and many other like them—argue that nonceliac gluten intolerance is rare, and that people who eliminate gluten from their diet are just silly fad followers. In this article, however, I’m going to present three reasons why NCGS is not only a bonafide condition, but may in fact be a much more serious problem than celiac disease.
#1: Celiac Disease Is Far Easier to Diagnose Than NCGS
According to some estimates, for every diagnosed case of celiac disease (CD), there are 6.4 undiagnosed cases that remain undiagnosed—the majority of which are atypical or “silent” forms with no damage to the gut. (1) This silent form of CD is far from harmless; it is associated with a nearly fourfold increase in the risk of death. (2)
I believe that patients with NCGS are even more likely than patients with CD to go undiagnosed. Most gastroenterologists today know how to screen for celiac disease. They will typically test for antibodies to antibodies to alpha gliadin, transglutaminase-2, deamidated gliadin, and endomysium, and if positive do a biopsy to determine if tissue damage is present.
However, we now know that people can (and do) react to several other components of wheat above and beyond alpha gliadin, the component that is implicated in CD. These include other epitopes of gliadin (beta, gamma, omega), glutenin, wheat germ agglutinin (WGA), gluteomorphin, and deamidated gliadin. What’s more, people can react to other types of tissue transglutaminase, including type 3—primarily found in the skin—and type 6—primarily found in the brain. (3, 4, 5, 6, 7, 8)
Why the “gluten intolerance haters” are wrong.#gluten #glutenintolerance
So, imagine a scenario where the patient is reacting to deamidated gliadin, glutenin, gluteomorphin, and either transglutaminase-3 or -6, but not reacting to alpha gliadin or transglutaminase-2—which are the antibodies used to screen for CD by most doctors. They will remain undiagnosed, and may continue to eat gluten for the rest of their lives, putting themselves at serious risk for autoimmune and other diseases.
This is not a hypothetical situation. In fact, I see cases like this all the time in my practice. Here is a screenshot from a recent test I ran on a patient. I use a much more thorough test for wheat and gluten intolerance called Array 3 from Cyrex Laboratories. Unlike other tests, it measures antibodies not only to alpha gliadin and transglutaminase-2, but also many of the other components of the wheat protein I mentioned above, as well as transglutaminase-3 and 6.
This patient is not reacting to alpha gliadin or transglutaminase-2. Had they been tested by their conventional doctor, they would have been told that they do not have celiac disease or gluten intolerance.
However, as you can see, she is reacting quite significantly to several different components of wheat, including:
- Native and deamidated gliadin and gluteomorphin, which are compounds produced during the digestion of wheat.
- Glutenin, which is the other major fraction of the wheat protein, along with gliadin.
- Gliadin-transglutaminase complex, which indicates that the patient is experiencing an autoimmune reaction to wheat.
- Transglutaminase-3, which is expressed primarily in the skin, and to a lesser extent in the brain and placenta.
- Transglutaminase-6, which is expressed in the brain and nervous system.
When this patient consumes wheat or other gluten-containing foods, she may not experience the classic digestive symptoms associated with CD or NCGS, because she is not producing antibodies to transglutaminase-2 (which is mostly expressed in the gut). Instead, her intolerance of wheat could manifest in skin conditions like eczema or psoriasis, and in neurological or brain-related conditions like depression, peripheral neuropathy, or ADHD. (9, 10)
Worst of all, if this patient had not had this test, and had continued to eat wheat and gluten for the rest of her life, it’s likely that she would have been at much higher risk for the long list of serious conditions that are associated with gluten intolerance, such as multiple sclerosis, ataxia, diabetes, and even Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease). (11, 12, 13, 14)
Unfortunately, this patient is not the exception—she is the rule. I’ve seen so many test results just like this, where the patient would have been misdiagnosed as not having gluten intolerance had they gone to a conventional doctor.
This presents another obvious problem, of course: if very few health care providers are doing the correct testing for gluten intolerance (like the panel from Cyrex above), then how can we possibly know what the true prevalence of NCGS is? We can’t—but given everything I’ve written above, we can certainly suspect that it’s much higher than currently believed.
According to Cyrex Labs, 1 in 4 people that take the Array 3 panel test positive for some form of wheat or gluten intolerance. Granted, this is not a representative sample, since most people that take the Cyrex panel are dealing with chronic illness of some kind.
Even with the limitations of current testing, however, some researchers have speculated that NCGS may affect as many as 1 in 10 people. (15) I suspect this is accurate, if not conservative.
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#2: Current Cultural Attitudes toward NCGS Mean More People Will Remain Undiagnosed
And for reasons that I do not fully understand, they do so with an almost religious fervor.
The “gluten intolerance haters” seemed to emerge in force after a paper published by Gibson et al. in 2013 made the rounds in the media. This study found that a group of patients with irritable bowel syndrome (IBS) were not sensitive to gluten, but instead were reacting to a group of poorly absorbed carbohydrates called FODMAPs. (16) Aside from the fact that this study did not in any way disprove the existence of NCGS, from a practical perspective the study findings would not have changed the behavior of most people with IBS who identified as being gluten intolerant, since wheat and many other gluten-containing grains are FODMAPs and should thus be avoided by these patients.
More importantly, however, in the last two years since the Gibson paper new studies have been published that directly contradict Gibson’s findings and strongly suggest that patients with IBS do, in fact, react adversely to gluten—and not just FODMAPs.
For example, a new double-blind, randomized trial out of Iran was specifically designed to determine whether a group of IBS patients reacted to gluten specifically, or simply improved for other reasons on a gluten-free diet. (17) Here’s how it worked:
- 80 patients followed an “almost-gluten-free” diet (dietary compliance was considered optimal if consumption of gluten was below 100 mg/day, the equivalent of roughly 1/8 tsp of wheat four).
- After six weeks, the 72 patients that complied with the diet and experienced significant improvement were then randomized into two groups: Group A, and Group B.
- Group A (35 patients) was given a 100 g packet containing a gluten meal (free of FODMAPs). Group B (37 patients) was given a placebo packet (100 g) containing rice flour, corn starch, and glucose.
- Patients in both groups consumed the powders for six weeks, while both groups continued on gluten-free diets.
After six weeks of the diet symptoms were controlled in only 26% of the gluten group, compared with 84% of the placebo group. In the gluten-containing group, all symptoms—especially bloating and abdominal pain—increased significantly one week after starting the gluten.
The authors point out that it is important to properly identify gluten intolerance and distinguish it from FODMAP intolerance because some recent research suggests that long-term low FODMAP diets may have adverse effects on the gut microbiome. One study found that a low FODMAP diet compared with a habitual diet reduced the proportion and concentration of Bifidobacteria, one of the most beneficial species of bacteria in the colon. (18) (Authors note: I will be exploring this issue in more detail in a future article.)
But I would add another equally serious consequence of misdiagnosing gluten intolerance as FODMAP intolerance, which is the increase in risk for numerous and sometimes serious diseases that occurs when someone with NCGS continues to consume gluten.
#3: Many Doctors and Patients Aren’t Serious Enough about NCGS Treatment
This last point is a natural consequence of the first two. If detecting NCGS in conventional medical settings is unlikely, and there is a strong cultural backlash against it, where does that leave the millions of people that are likely suffering from NCGS without even knowing it?
Even if they do suspect that they are gluten intolerant, they might be dissuaded from pursuing a strict gluten-free diet by their friends, social media contacts, or even their doctor, all of whom are likely uninformed on this subject and do not understand the deficiencies in conventional testing or the complexity of the topic.
Based on the research I’ve reviewed in this article, and several others I linked to here, we should be more aggressive—not less—in diagnosing and treating gluten intolerance.
We need greater access to test panels like Cyrex Labs Array 3, which is the only commercial test outside of a research setting that screens for antibodies to many of the proteomes in wheat, instead of just testing for alpha gliadin. We need better training for doctors on how to recognize the myriad of symptoms and conditions associated with gluten intolerance, so they don’t make the common mistake of assuming that the patient isn’t gluten intolerant if they don’t have digestive problems. And we need some prominent journalists to educate themselves, step forward, and take responsibility for treating this as the serious, potentially life-threatening problem that it is.
Even without access to tests like Array 3, an elimination/provocation trial where gluten is removed completely from the diet for 60 days and then reintroduced is still considered to be an accurate method of assessing gluten intolerance. Doctors should be much more proactive about recommending this to patients, and despite the claims of some mainstream nutritionists and dietitians to the contrary, there is no risk to removing gluten from the diet. (19) If anything, people on a gluten-free diet are more likely to increase their intake of essential nutrients, especially if they replace breads and other flour products with whole foods (rather than with gluten-free flour alternatives).
This may explain why up to 30 percent of CD patients continue to have symptoms or clinical signs after adopting a gluten-free diet. (21) For this reason, I recommend a completely grain- and dairy-free diet during the gluten challenge period.
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I found out I am gluten and dairy intolerant through an elimination diet of grains added sugar and dairy. I then went and talked to my doctor about it. She sent me to a GI Doctor. I was told that because there is a family history of wheat allergy that I probably have gluten intolerance or possibly celiac. She said that because I already stoped eating gluten that it would be best if I did not get tested.but to continue on a gluten free diet. However with no history of dairy problems in my family she told me to start eating dairy again. That was a mistake. I react every time with bloating, cramps and gas. I discovered that I also react to lactose free items that have dairy in them. For exampl coffee mate is lactose free but contains a dairy protein and I react to that. So I found this article very useful it confirmed what I already know. I have trouble digesting proteins. In milk as well as gluten.
My sister has had tummy trouble for years she can’t ever eat without pain. Dr’s have done many tests and can’t find anything wrong so they are just treating the symptoms but she still eats everything. She won’t try gluten or dairy free because the Dr says they are not a problem and she does not want to give up her favorite foods.
I found out I have non celiac gluten sensitivity, and some of my family still doubt this! I didn’t have your recommended screening, just the typical celiac blood test. But I was sick off and on for months! Lost 25 pounds, had digestive issues! Finally I found a nutritionist who got me off all gluten. She said I had many symptoms of celiac even without positive blood results. It took me a full year for my health to fully recover, and during that time I could not do dairy as well. I can do very small amounts of dairy now, but I also have gastritis and during flare up, no dairy! Other people including professionals are somewhat ignorant! I have a chiropractor who does natural supplements. I just started on wheat germ oil, which he assured me had no wheat in it, but I got stomach pains and diarrhea after taking it! Most likely gluten traces are in it! So glad I figured it out, and only had taken couple of doses ! Anyway, I am 7 years with this sensitivity, and I cannot have any gluten at all! So I don’t take chances! I guess expecting others to understand is unthinkable! But my husband is a great support. A friend is bringing over gf apple pie as a treat, but I had to ask her how she made it, and what she put in it. Rather safe than sorry! And, also did it come in contact with any gluten in her kitchen?
I was asbestosis eat more wheat , eat more wheat. about 3 years ago I began to get sick for different illnesses. My migraines were stronger and more frequent like twice weekly. Heart burn, tiredness and bluttednedd when I ate bread. I did not put it all together.
After a long pregnancy with digestive issues and daily migraine I delivered my son and was admitted back to the hospital a day after discharge with fluid retention, head aches and brady cardia. All the issues of pregnancy complications such as preeclampsia was rullef out. The doctors basically had no answers and just treated the symptoms. Weeks later i started suffering from weakness in my arms with pain. I was afraid to hold my newborn baby because I had no strength in my arms. They diagnosed me with carpal tunnel syndrome. I stayed home for an additional month resting. I returned to work and my symptoms would get worst. I started developing neuropathy both in my hand a and legs. They stated the hands were due to carpal tunnel syndrome, surgery was advised and done. One week after the surgery I went blind for a few minutes. I was admitted and all sort of autoimmune test were done again. I had already been seen by a neurologist, rheumatologist, gastroenterologist and orthopedic doctor. All the autoimmune disease were ruled out and test were all negative not once but twice, yet I felt like I was going to die. Doctors and even my friends who are doctors started telling me it’s in my head and I may be stressed. I keep telling them i’m getting stressed because I’m sick and no answers. By this time all my joints were cracking and hurting, the wrist of the surgery was constantly sore and wasnt getting better. I was dizzy all the time with blurred vision. Things were falling apart real fast. My shoulders and hip would hurt from laying down, I was constantly in pain.
I was determine to find out what’s the problem. I had to fight the drpression and start looking for answers because clearly my doctors had none.
I could go on and on about my symptoms but it would take all day. Finally I came across a lecture by Dr Fisiano from Boston university on cilliac disease and NCGS, the case study was exactly me. As of that day I went gluten free and I’ve been 90% better. All most all those symptoms were gone. 90% because it’s been 5 months and living gluten free can be challenging. I’m also very sensitive; therefore, even traces of gluten affects me.
Ps. Absolutely no migraine since gluten free
I have found that my psoriasis flares up only when I eat foods containing modern American dwarf wheat (a.k.a. “Frankenwheat”) which is probably 99% of the wheat consumed in America today. I can eat all of the pasta I want if it’s made from either Einhorn or Durham wheat, or things like Wasa rye crackers, which also contain gluten, without any problem at all. I can’t help wondering if most of the problems that people with some sort of “glutin sensitivity” have isn’t really specific to Frankenwheat.
I find that if I eat wheat products imported from Italy or Germany, in moderation of course, I do not get the gluten-related flare-ups. My thoughts mirror yours – it’s the genetically modified dwarf wheat AND the glyphosate in USA crops. “American genetically modified dwarf wheat” is not grown in Europe. AND, reminder that glyphosate (Round-Up) is banned Europe. I am convince glyphosate has a lot to do issues associated with USA grown crops.
I am still trying to determine if I have Celiac or NCGS, I was given a blood test about a year ago for Celiac all of the things they tested for came back normal except for the Non Deamidated Gliadin IGA, I was told the normal range would be under >13 and that my test came back at 1250.
The doctor I was seeing at that time had me do a endoscopy but it came back as inconclusive, he wanted me to also do a test where you swallow a small camera. It was at this point that I was told that even though I had checked in advance that his office was not covered by my insurance as in network and that I was being charged a huge amount of money for services already rendered so I could not afford to see him any more.
I then went to another Gastro doctor that was in network and she did another blood test and I was told that it came back normal. At this point I didn’t know who to believe so I decided to do a DNA test for food sensitivities and that came back stating I had a gluten intolerance.
My symptoms are Weight Gain, Constipation, Joint Pain, Brain Fog, severe Acid Reflux and extreme Fatigue.
I also question whether I should just eliminate wheat or is there a better diet for me to be on, my sister has similar issues and she is on the Fodmap diet and has improved significantly.
I’ve had psoriasis for a decade.then about 5 years ago I started having serious stomach aches. I would awaken at night with a horrible pain that the gastrointestinal Dr had no idea how to fix. I already knew I was reacting to dairy, so I cut that out of my diet. This helped a little but not fully. I then decided to try going gluten free as well. I am now a year into being gluten and dairy free (and legumes!) and my stomach doesn’t hurt anymore, my bloating has gone down tremendously, and even my psoriasis is very minimal!
I am a newly diagnosed gluten-intolerant with a value of 19.3, and who also tested negative for Celiac and seronegative for RA. I am being treated for migraines, IBS, anemia, fibro,inflammatory arthritis,neuropathy, and depression. Muscle weakness has forced me to quit my job and I am currently being tested for Myasthenia Gravis. I am about to embark on this new gluten-free lifestyle change,but is this damage reversible? Will I be able to return to work or are disability benefits approved for such? I am 50 years old and dealt with these issues my whole life. It has taken me this long going through uneducated providers before finding someone who presented this to me as a possible solution.
Tammy I have to say your symptoms are very similar to mine. I went gluten free and I’m 90% better. No more migraine, neurophy gone, my weakness has subsided my blurred vision has improved to about 90%, dizziness gone, heart burn gone, bluttedness gone, my joint pain pretty much gone.
I found out I am also sensitive to coffee; however, I feel energized and don’t need it. I feel alive again, thank God for letting me figure this out.
Our symptoms certainly do sound like they followed a similar path. How much time would you estimate
passed before you would say there was significant improvement? My specialists are split down the middle concerning the role gluten is playing in my ill health and my internist is actually suggesting I stop my GF diet! I have been gluten-free only 4 weeks and your comments give me hope. THANK YOU!
I’m gluten intolerant as well as dairy intolerant. I found several studies that say 90% of people that are gluten intolerant or have Celiac Disease, are also intolerant to dairy. So, if you’ve cut out gluten and are still having issues, try cutting out dairy as well.
If a breast feeding mother eats wheat, could it cause colic and facial rash in her baby ?
Wheat/gluten gives me migraine headaches. I tested negative for IgA antibodies. I paid for testing which said I had IgG antibodies for wheat/gluten (and soya) According to my doctors the IgG antibodies and the migraines are NOT connected. One doctor more or less said I was mad/ Got no support at all – made a lot of mistakes in the early days (malteesers, malt vinegar etc….and I paid for it with a crushing migraine….but in a way this just confirmed that I was right. I do have an uncle who is celiac……I suspect there is a genetic component to this. Posting this because there is bound to be someone else out there with the same issue. Hope this helps somebody. I went gluten free and I am doing great
Thank you, this gives support to my experience of migraines from wheat/gluten (*not* FOODMAPS!) and doctor’s disregard and refusal to even test for antibodies. The only thing worse than the migraines and peripheral neuropathy triggered by gluten, is the insufferable ignorance of the general public and even doctors. Sometimes it’s easier to just say “yes” when people ask if you’re ceoliac, so they’ll take your extreme reaction to gluten seriously.
I fit this article. Did not have gastro symptoms. Diagnosed with Hashimoto thyroiditis. Dr finally convinced me to go wheat/gluten free. TSH and antibodies much improved even though I still got traces of gluten. Fell off my good efforts over the holidays. When next tests were run, my test scores were bad again. Heartbreaking to have to live the wheat free lifestyle for me. Still have to cook for others. They will only go so far with this way of eating. I’ve also been experimenting with dairy and believe it is causing skin issues, bloating, and generally feeling bad. About to try and go dairy free for 1 week to see if skin issues start to heal.
Leigh, I am just learning about NCGS because my son probably has it. We are in the middle of figuring it out.
Anyway, I have been trying recipes that use nut and coconut flours. They have been fantastic and even better than the wheat flour recipes.
So far, I’ve made lemon muffins, brownies, pizza dough and am about to try an almond flour bread that uses baking powder. All were on Pinterest except the bread which is on Reddit.