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 have had problems with my skin for several years, digestive issues, and now after been diagnosed with Mgus, I was recommended to follow gluten free diet. I have celiac disease predisposition on Dna. And now I have solved my skin problems with gf diet, and the Mgus spike is stable…
I am 56. My gall bladder was removed when I was 19 due to horrible attacks of pain. At age 28 I was under 100 pounds. I went into therapy because I didn’t want to live anymore; the pain and the psychological aspects it caused were that bad. And, since doctors couldn’t find the cause, it must be in my head. I gave up every kind of food at one point or another. Nothing gave complete relief because I didn’t know how to do it right and no one I knew of was talking about this issue. Finally, I heard about gluten intolerance – not just wheat allergy. It took more time to figure out the details. Finally, eliminating gluten and all grains ended my pain a few years ago.It didn’t matter to me whether or not I was celiac. Ironically, this spring an ENT insisted on testing me for celiac disease, saying I would need to be monitored for intestinal cancer if I was a celiac. I was positive in only one marker and so considered negative for celiac. My being Gluten intolerant was no big deal. I felt a lot of shame in the past, hid my issues from others and stopped going to doctors about them. The plus side is I became very knowledgeable myself. Thank you Chris, for your very important work and for spreading the word especially in the face of doubters. You are helping to end suffering. And, thanks to all who shared your story. Someone sharing their story with me was how my healing began.
Hi Chris,
I don’t mean to oversimplify the Cyrex Array 3 test results but if someone (like your example client) had a reaction to the gliadin-transglutaminase complex indicating an autoimmune response, would you infer that they had celiac disease as opposed to NCGS? Either way, the g-f diet is necessary, but I guess I’m just curious for “naming” purposes!
Thanks,
Tracy
Gluten has become my major nemesis. I have never found it harder to quit consuming something. Cigarettes was easier for me. I will overcome this though, it’s a matter of time. Love your podcast. Thanks Bill
I totally believe that NCGS is a form of Celiac that doctors have yet to find a way to verify and understand!
MANY many Doctors spent 40 years – 4 long decades telling me there was absolutely NOTHING wrong with me. I had to be a hysterical person looking for attention or some other reason to “want to” be sick. Why would they suddenly know all there is to know?
I have been on a gluten free diet for the last 4 month and have dramatically improved my abdominal pain. I also have stage 4 endometriosis . I have noticed since going GF that my pain is amost non existent ! I am going to be tested for celiac. Do you find that there is a connection between gluten intolerance and endometriosis ? And living in Ontario Canada what is tests should I be asking my GP for regarding FODMAP AND GLUTEN TESTING.
Wendy,
I am currently a patient of Chris. I also have stage 4 endometriosis and I had this Cyrex lab done 3 weeks ago which showed gluten and wheat intolerance. My question to him was yours exactly, and the response was that many people with endo have digestive problems. I don’t recall him being so bold as to say NCGI is the root cause from which all things come, but he did at least say that he’s aware of a link between endo and digestive disorders (which could be gluten as well as other food intolerances I suppose).
I have only been gluten free for 3 weeks and the only thing I’ve noticed is an improvement of the skin on my arms feeling softer/smoother. That’s all good and great but I’m patiently waiting to see if there will be a reduction in endo pain and improvement of hypothyroidism. I take comfort that you report a reduction of symptoms. It’s a beastly illness that’s taken over my life.
I had my first (out of four) laparoscopies for endometriosis when I was 28. Instead of taking the medicine the ob-gyn recommended to slow the disease I decided to go the “healthy” route, cutting all grains out of my diet, among other things. Didn’t help me one bit – the endometriosis continued to get worse. At age 35 when I got married and wanted children the damage from the endo was far too extensive,
Hi,
You can’t get tested for celiac because you gave up Gluten. You must be eating it to be tested. if you have given it up, you must consume it for 10-12 weeks or your test is inaccurate. They should have told you that. Your Doctor was irresponsible. Even the Cyrex Lab test is not very accurate after giving up gluten.
However, you can be tested for gluten-intolerance via a gene test whether or not gluten is being eaten. My daughter and I were tested several years ago via enterolab.com. Finding out that sensitivity and eliminating gluten (& cow dairy) made a major difference in both of our lives. She no longer has stomach issues and breakouts, and I no longer have severe, wide-spread pain from fibromyalgia (diagnosed by the Mayo Clinic 20 yrs. ago). Though I’m still coping with the residual fatigue and brain fog, these are not nearly as bad. I’m now working on detoxing heavy metals as the challenge test recently showed a serious overload of mercury and lead. These are likely having a major impact on my brain and mitochondria. When people ask what it’s like to have fibro, I’ve always said, it feels like I have lead in my veins. Turns out I do!
what is the Array 3 test? Bloodwork? My mother feels Gluten is the cause of much that ails people and doctors are not researching this deeper. I amn going to see if I can try the 14Four program
Yes, it’s a blood test. It must be ordered through a health care practitioner that has an account with the lab (Cyrex).
You asked…
>Are you gluten intolerant? If so, how did you find out?
Scientifically.
When I became Ill, I suspected it was something I was eating. So I kept a food diary of everything I ate and the symptoms I experienced after each meal. It didn’t take long to identify that wheat, rye and barley were making me ill. (Passing out after having eating a nine-grain sandwich at Panera Bread was a big hint that I couldn’t tolerate those nine different grains of wheat!)
I showed this diary to my PCP who said I was just imagining this because he had blood tested me for celiac disease and I didn’t have it. So it was “impossible” for me to be sick from wheat, rye or barley.
I was tempted to just self diagnose at that point, but decided to consult with one of the best allergists at Children’s Hospital of Pittsburgh instead.
He looked at all my records and my food diary and immediately diagnosed me as “gluten intolerant”. He was also the first doctor to ever explain to me the difference between celiac disease and what we now call NCGS.
I explained that my PCP said this was impossible. My allergist didn’t miss a beat and replied: “Your PCP is wrong!”
I was hoping my allergist could cure me, but he told me that there was no cure; that only a gluten free diet would work and that like a celiac, I’d be on this for life. He dug through his files and gave a documentation on the GF diet. He said it was the only medicine I would need.
So I went gluten free right then and there and within a few days most of my symptoms were gone. In a month I was my old self again. I’ve been 100% gluten free ever since.
>Have you felt judged or criticized by your friends or by your doctor for following a gluten-free diet?
Yes, my PCP wanted me to take six months worth of Valium to cure my “obsession” that I was ill. Instead I took my allergist’s advice and went gluten free. I also got a new PCP.
That was ten years ago. I haven’t regretted either decision. It gave me my life back!
I tried a gluten-free diet to see if I could gain more energy, as I’ve had ME/CFS for 26 years. That hasn’t happened, but the migraines stopped, and allergic reactions have lessened. Hayfever was a major issue every summer since the age of 10. Now aged 50 I can go outside medication free. Bliss!
When I had some gluten accidentally, a few months into my trial, glands in my throat became swollen, and I had a migraine for the next two days. I now energy test everything I buy, and carefully read all labels.
I’ve never been tested for gluten intolerance, but I don’t feel I need to. I know what my body is telling me, and it shouts when I take gluten onboard.
Thank you for such a great article. I’m so sick of the gluten-free haters. We’ve taken to telling everyone my daughter and I have CD just to avoid a endless debate.
After my second child and second c-section I experienced terrible stomach pain. My GP just brushed it aside and said it was from scar tissue and to take ibrupofen. I literally was unable to stand from the pain and not interested in constantly ingesting pain killers. Purely by accident I didn’t eat gluten for 24 hours and the pain was gone. I had never had a reaction to gluten, that I knew of, before my daughter was born.
Meanwhile I had a very unsettled baby who screamed in pain all night and had terrible ezxema to the point where her skin was cracked. No one could offer a solution. We took her off gluten and with 24 hours she was a perfectly happy little girl. Her skin cleared up and she was no longer in pain.
Have you ever heard of pregnancy induced NCGS that become apparent when a child with CD or NGCS (she’s undiagnosed) is born?
My symptoms appeared when I had my second child. While both children have tested negative for CD, both of my genes are “bad” so they have at least one bad one. My second born is 6 and often complains of stomach pain and has other indicators for CD so I believe that there is a link there, but haven’t taken the step to fully eliminate gluten YET.
I went on a GF diet as a last resort 18 months after being told I just had an anxiety disorder and most of my symptoms disappeared or substantially improved — ataxia, migraines, generalized anxiety, etc. I believe that the symptoms were brought on by the stress to my body of having the second child and exacerbated by the death of my father — another huge stressor.
The celiac specialist I saw 6 months AFTER I diagnosed myself with a gluten issue says that she believes I have CD even if the traditional tests didn’t pick it up and that the children should be given gluten a maximum of once per day given my genetic profile.
I know that it could also be a sign of Hypothyroidism. Very often Hypothyroidism is triggered by giving birth. Worth looking into, but make sure they test more than just TSH. They should be checking T4 and Free T3 also. The “acceptable” lab levels should be checked against those published by Hypothyroid Mom – she can be found on Facebook and has an amazing website that is supportive of gluten free and has wonderful recipes too! Hope you find this helpful!
It is my understanding that it isn’t the ‘gluten’! It’s the ‘gliadin’.
Gliadin is a class of proteins present in wheat and several other cereals within the grass genus Triticum. Gliadins, which are a component of gluten, are essential for giving bread the ability to rise properly during baking. Gliadins and glutenins are the two main components of the gluten fraction of the wheat seed.
I was a vegetarian for 5 years, during which time I consumed a lot of gluten-containing products, from breads to almost entirely gluten-based meat substitutes. At this time I was young and pretty uneducated about gluten-related health issues in general. Progressively over the 5 years I lost energy, became more and more tired and listless, and developed almost constant abdominal pain and bloating, but it happened so gradually that it was hard to pinpoint any cause. I got tested and drugged for everything under the sun, it seems, from thyroid disease to cushing’s syndrome, PCOS, IBS, lactose intolerance, various food sensitivities and deficiencies…nothing really came up positive, but the doctors said, “try the treatment for it anyway, maybe it’ll work.” (For some reason, gluten-sensitivity or celiac never even came up in discussion). Some things seemed to help a little, others not at all, but eventually the symptoms came to be attributed to my not eating meat, even though I was very diligent about getting balanced nutrients in general.
I put meat back into my diet and stopped with the gluteny meat substitutes, and I did feel better overall, but some of the problems remained, maybe on a smaller scale. I still felt like I got tired easily, my appetite was messed up, and when I did eat, more often than not I’d get abdominal cramps and bloating, and sometimes even vomiting. I developed a brachial neuritis that my doctor said was probably autoimmune.
Then one day, out of the blue, I broke out in a horrible itchy rash (that looked like many, many small hives) that started around my knees and progressively spread down my legs and up my body. At first it was all over, then slowly subsided to migrating patches, then to a general itchy sensation on the skin that would flare up if I touched or scratched anywhere (dermatographia?), and finally to itchy patches that would appear under certain conditions, like when I got hot or after I ate. The whole process lasted about 2 months and allergy tests all came back negative. I had no idea what was going on, but I did notice that my abdominal symptoms got much worse after it happened. I could hardly eat anything. Doctors were stumped, I was stumped.
Then one night I had a dream that I was eating bread, and as I ate it it turned to poisonous mushrooms in my hands and in my mouth. I woke up nauseated, but suddenly remembered that I’d heard something about a disease where people couldn’t eat bread because of some protein in wheat (I think my boyfriend’s sister had it). So I wondered if my body subconsciously knew what was wrong and was trying to tell me. Eliminating wheat from the diet was about the only thing I hadn’t tried, at that point, so I decided I would. A couple of weeks later I felt amazing. My energy skyrocketed, I wanted to eat everything, the itchiness was gone. I had found the culprit.
Since then, I have not voluntarily consumed any gluten-containing products, and I’ve continued to feel progressively better. Occasionally I’ll get a bout of symptoms, but it’s very rare, so it probably happens when I eat out and the restaurant workers aren’t diligent in preventing cross-contamination when they call something “gluten-free” – or maybe there is something else I react to as well, that I haven’t found yet. I’ve never had a clinical test for CD or gluten sensitivity because all tests require consuming gluten, and I just can’t bring myself to do it voluntarily. Is there a benefit to getting a formal test?
I’m wondering if you’ve dealt with or heard of any cases similar to mine. Any other advice, suggestions, ideas, greatly appreciated.
I had a situation very similar to yours. I was vegetarian for a few years when my symptoms started. I ate a lot of whole grains during this time. I had pretty much constant bloating and fatigue plus what I thought were “random” hives from seasonal allergies. At one point they were so bad they were blistering. I gave up gluten and they never came back.
Thank you for this informative article! After nearly two decades of trying to control Angioedema and 10 years of unbearable symptoms from Hashimoto’s Thyroiditis that couldn’t be suppressed with synthroid and cytomel, my 6th doctor and a good friend recommended a gluten free diet even though I tested negative for celiac. After conducting my own research and finding your page, I jumped in. I am two months in to the GF diet and have been symptom free aside from two Angioedema triggered reactions I’ve had after drinking beer. Hard to believe after 17 years of severe swelling of the body (and I mean severe- needing emergency medical treatment), a multitude of prescriptions, a handful of doctors, injectable steroids, days upon days of missed work, a laundry list of unbearable symptoms associated with low-thyroid function, and thousands of dollars spent, it’s been gluten related all along. I have to wonder if I would have developed the second autoimmune disease (Hashimoto’s) had i been properly diagnosed when I developed the first (Angioedema) at 21 years old. It is truly maddening to think of the experiences I’ve had over the course of my entire adult life that could have been altered by a change in my diet.
I’m now faced with another problem, as my 5 year old son has been battling type 1 diabetes for 3 years. I’d like him to also eat GF, but is it too late for him?? Is the damage done? Did I cause this by eating gluten when I was pregnant? Somewhere in the article it mentions the placenta? Since he is clearly at risk for auto-immune diseases, will continuing to eat gluten increase his chances of developing another? How can I get my husband to buy in? 🙂 he’s a naysayer.
Thank you again- I have found your articles and resources to be of great help throughout this journey. I am eternally grateful!
Dear Jessica, I can empathize with you. I have probably had celiac my entire life, and all doctors told me that I was fine–I had skin problems, PCOS, IBS, fatigue, was underweight etc. My second child developed Type 1 at age 3. She is now 18, and a few years ago when I learned that autoimmune disease and leaky gut are linked I encouraged her to go GF and she has (I went GF ten or so years ago when I started figuring it all out through sites like Chris’s). It’s never too late. A GF diet will not reverse his Type 1 but might prevent the onset of another autoimmune condition in the future. I wish I had had this knowledge all those years ago, also, and gone on a GF/nutrient dense diet before having children. Type 1 is such a burden! All my best wishes to you.
Could gluten be responsible for chronic post nasal drip caused chronic throat clearing? Especially at night when going to bed?
I went gluten-free 18 mos ago, and it pretty much stopped, after years of this happening, and I used to eat a lot of bread both at lunch and dinner. I’ve since wondered if it was the texture of the grains irritating my throat, or if it was an internal reaction. Also, I’ve noticed that I get canker sores much less often and when I do get them they heal dramatically more quickly (days vs wks sometimes) — again wasn’t sure if it was the texture or internal. French bread could often be a problem due to the crunchiness and shard like pieces of the crust. (I take lysine in high doses regularly, but always have.). I still rarely get the throat clearing thing, especially if I’ve had a lot of lemon juice or similar in my salad dressing and for some reason it’s irritated my throat that night, but again very rarely.
All those years I assumed it was dairy, but I still consume dairy, even at night right before bed sometimes, and no throat clearing.
Could it have been a form or sign of NCGS?
Yes, those symptoms can be related to gluten sensitivity. I get sores inside my nose, my inner ear itches non-stop and head congestion to name a few symptoms. When I detox off gluten, my skin feels like it’s on fire. I’ve been tracking my symptoms since going gluten-free (or trying to be gluten-free) so I know my symptoms are related to ingesting gluten. Even though I have no gastrointestinal issues, I definitely need to avoid it.
Tabatha, thanks. My skin is on fire too. But I assumed it was because of the change in my skin condition that caused me to get off of gluten in the first place. I’d never considered that it’s the actual detox of gluten that is causing the heat. It’s been 18 mos since consuming gluten and my skin is still on fire, so I’m not sure that’s the cause for me, but I’m learning that the more I know, the more I realize that anything is possible.
I don’t know why Salicylate sensitivity is not considered in most of these discussions?
Could it be an inconvenient truth in the Paleo diet?
I am doing really well on Paleo but low SAL.
Especially skin conditions, consider salicylates. If the liver enzyme sulfo transferase is not detoxing the salicylates in all these high salicylate Paleo foods they accumulate under the skin. Sweating, e.g Bikram or saunas will help if you are able to take that and rehydrate well.
See FedUp.com.au for Salicylate info under Fact Sheets
Royal Prince Alfred Allergy Unit, Melbourne Australia has helped thousands of patients with elimination & challenge for Amines (“histamines” in US), Salicylates & Glutamates, as well as all the added & processed food chemicals and usual suspects. Is it that most people just won’t manage elimination & challenge? The question is how to get the process back up to speed if compromised?
Adding my own n=1, I had a similar symptom when I was still consuming gluten, this weird postnasal thing that would half-choke me and wake me up when I was trying to fall asleep. Another thing that would happen is I’d have weird itchy sensations or twitch awake. And that’s when I would get sleepy, because there were many nights I had insomnia, some leading me to stay awake *the entire night*. I think I came very close to bipolar disorder as well. And then there were the GI problems, including reflux and, um, issues lower down, and then there were the migraines.
I get highly irritated when one of my Facebook friends posts a link “debunking” gluten sensitivity/intolerance. I didn’t even get off wheat because I thought it was causing problems–I assumed my issues came from excess carbs. I had hit a weight loss stall and imposed an elimination diet on myself to break the stall. When I reintroduced wheat it was just a plate of noodles, and within half an hour I was sleepy and stupid and still had to drive home. Noticed not long after that even when I ate traces of gluten in sauces, as in the sauces they offer at bd’s Mongolian Grill, I’d still turn into a mental slug within the hour. That scared me. I went gluten-free at that point and have remained so. Several months later I noticed my migraines were gone.
Oh and as a postscript, I still think I have problems caused by excess carbs, I meant to say that I thought certain specific problems were caused by them and turns out it was mostly the wheat doing it. I still have some other issues if I overdo the carbs, like very poor energy in the morning and water retention and, of course, weight gain.
For those following the comments, just reviewed a recently published study that further strengthens the argument that NCGS is not only real, but can lead to significant problems.
It found that patients with NCGS were more likely to have autoimmune disease (especially Hashimoto’s) than patients with IBS but without NCGS.
https://www.ncbi.nlm.nih.gov/pubmed/26026392
I have been gluten intolerant for over twenty years. I discovered it myself after seeing 2 specialists who did not find cause of my severe pain and body rash. I also discovered that tablets with magnesium stearate in gave me the same symptoms .It is an ante caking agent that is used in most tablets. As I have an underactive thyroid I have to take liquid medicine as there are no tablets free of this ingredient. Could this agent contain gluten. If so, G.I people need to be aware. I notice one company that sells vitamin tablets claim that they are all free of magnesium stearate. It must be a problem for other people for them to be doing this
Thank you for drawing new attention to this very real issue. I spend a few decades dealing with issues now known to be caused by gluten. When my husband and son were diagnosed with CD and our family began the journey of gluten freedom, I began to isolate certain symptoms with having eaten gluten since I was eating it less and less. My intolerance was diagnosed with a chiropractor who practiced Applied Kinesiology. He also determined I am allergic to cow’s milk and MSG. I am forever thankful to him for his wisdom in treating me. This is real and serious.
Dear Chris,
Thank you for your profound work. I am a very concerned mother of a 12 year old daughter. She is on ADHD medication. Much to my dislike. As the daughter of a homeopath I am very much against medication but my daughter can not concentrate without it. I want her to go glutenfree more than anything. She experiences abdominal pain besides the ADHD symptoms. However my docotor is not open to my concerns and my daughter is not willing to give up on all the foods that she loves. I am afraid that if I force her to change her lifestyle that it will backfire and result in an eating disorder and obsession with ‘forbidden’ foods. I live in the Netherlands and would like to get acces to the Array 3 test for her. This might help het change het mind. To me the relationship is clear between her symptoms and what she eats but I am without proof. How do you recommend I mve forward with this problem? Dutch doctors are known to be very sceptical. There a no holostic doctors in the Amsterdam area where I live. Can I get access to the Cyrex lab as a consumer? Thank you again for your work and I hope that you can respond to my question.
Kind regards Marjena Moll
This is a response to Marjena Moll:
I think that “gluten sensitivity” might be just the tip of the iceberg for what’s ailing you 12 yr old daughter!
Do get a hold of the neurologist Dr. David Permutter’s newest book BRAIN MAKER and read what he says about the very issues you describe and start following – a few at a time – his suggestions!
This should not be that hard in Holland…I’m often in A’dam, since I have family living there. Getting good milk products, like yogurt with life cutures, Kefir, fermented vegetables (that you can also make yourself!) is possible there! And, your daughter might actually like them…her body telling HER that they are good for her health! (Chris’ daughter Sylvie, he told us, likes Sauerkraut!)
You can also make excellent “Smoothies” with yogurt/kefir and fruit! They are really nutricious & tasty and can pitch-in for desert!
To me it sound like your daughter has a basic GUT problem (disturbed intestinal flora, also called: the Microbiome) which can have MANY origins – the book contains a questionaire – that manifest in HER health issues.
I’m 3 weeks into Dr. P’s protocol and my long standing “skin problems, depression, bloated belly, lack of energy and sleep problems” all have cleared up! The book has truly changed my life!
And in Holland, you can order the supplements/nutrients that he recommends from Vitamin Shop, Swansons, etc. (Unlike Germany, it has much easier “shipping regulations”).
I wish you all my best!
Hi Marjena,
I am from the Netherlands too, got the link of exendo.be from a orthomoleculair doctor. You ll find definetely evidence for ADHD and ADD caused by an ezym deficiency!
Tests are available as well, also some good orthomoleculair doctors in the Netherlands will be able to test this.
Hope this helps!
Sigrid
Hi Chris. I’ve been gluten free for 4 years (since my IgG panel showed NCGS) and wheat free for about 7. I feel way better but still have some digestive issues. I was given proton pump inhibitors for years as a kid. After I got off those I had undiagnosed food sensitivities along with leaky gut and copper overload. This led to a parasitic infection which I treated conventionally. I’m slowly on the mend and have the best time following an SCD inspired Paleo lifestyle.
I’m 29 and very serious about nutrition and health. I love your website and have gotten my 61 yr old uncle following your plan. My father was a neurosurgeon who passed from ALS in ’99. Who knows, he could have had NCGS. Thank you so much for sharing all your knowledge. I’ve had no luck with conventional MD’s whatsoever. I do hair mineral analysis through Dr. Lawrence Wilson. His articles are nutty but the supplementation and nutritional balancing he provides has really worked when nothing else has.
I work as a research assistant in a lab who studies ALS. ALS is thought to be autoimmune but based on the current research I think at this point we can only guess there might be a connection with CD. The reference that Chris listed above is a case report of a man who had “imaging findings worrisome for ALS.” This is only one case and it wasn’t even a confirmed case of ALS. There might be a connection but right now we don’t have the information to prove that.
I have ME and CPTSD. Undiagnosed IBS but I know it was there ever since illness in India in my late teens. asthma, light activated epilepsy (only one fit ever… But a severe one that flattened me for a year afterwards and I still get headaches in the spot ten years later). I went through nearly four years of intense wrist pain… Never properly diagnosed, but very much like peripheral neuropathy. Acutely painful. I am pretty sure the ibuprofen I took did me no favours. I had tests that identified auto- immune antibodies specific to attacking the thyroid (though my thyroid levels within the normal range- does that mean I am developing Hashimotos?someone told me it does), so I tried going grain freestyler some research as I didn’t want to have no hypothyroidism on top of ME, but had an extremely severe reaction with my CPTSD symptoms flaring up acutely. I was too ill to spot the link, but stopped the bulk of the diet as I could not handle the organisation of it with such severe symptoms plaguing me (it was horrendous… Not sure how I got through that time). I decided to keep with no gluten though (thank goodness). The CPTSD immediately improved when I took up the other grains again (any ideas why that was? I wonder if it was down to die off reactions, and that maybe it would have suited me very well if I had managed to stick it out?) My wrists gradually improved over the next year – I put it down to the acupuncture I started having at the same time, and I know for a fact that really helped as it got worse when I missed an appointment. But a couple of times I had gluten again by mistake and I was really sick the next day…. Terrible upset tummy and fatigue. I also gave up coffee again (third time) to help cope with the anxiety from CPTSD which really helped and knock on effect much better gut functions too. I make milk and water kefir and kombucha too. All producing improvement. I think those improvements made me able to distinguish other problems more clearly… Too much milk clearly has an impact on me. So in the last few weeks I started cutting dairy too… Almost instant improvements in the horrible joint pains and clicking joints that were getting worse and worse. Pains almost gone! Only on very run down nights now. Vast improvement. Bit depressed about that I love cheese! But so so worth it. I am guessing there may be more discoveries yet to come (not too many more I hope or eating t will get very hard and like many others my family give me a very hard time about it) and keep on hoping that I might discover one that would help with the fatigue… I can’t walk far and probably spend a half to a third of my life unable to get out of bed or off the sofa. Though years of adrenalin from CPTSD and a lifetime of poor sleep means I most likely need lots of rest before I can even hope for improvement there. I would love to get that test shown above and wonder if the wrist pain was due to gluten as well… At least I can write and drive and paint again now they have improved! 😀
I know there is something more wrong with my stomach now that I took grains out . It’s like I was feeling a lot better after for about 3 months . Than the bloating and just the icky stomach feeling is coming back . Hard to figure things out ….
What is your probiotic consumption like, just for curious? I still maintain that many or most of our society needs to be taking extra probiotics. Our forefathers thought it was important, and they did not live with chlorinated water or antibiotics, as we do. I find it difficult to eat enough fermented foods, although I love them when I do. But I have to supplement with many more times the recommended daily amount to maintain. I think all of these symptoms and diagnoses go hand in hand with the state of our microbiome.