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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16 years ago I was diagnosed with IBS. I lived with a lot of discomfort and pain but was guided by my Dr. who said I was just stressed and that I should try to distress. Three years ago I completed a Naturopathic Nutrition diploma and went gluten free. OMG, the effects were immediate…the tap got turned off, the bloating disappeared, along with the pain. My joint pain improved and even my migraines lessened. I put my daughter who is dairy free onto a gluten free diet and her health improved all round. With hindsight I believe my Dad may also have been gluten intolerant, given all his symptoms, but sadly he died 5 years ago, so I never had the pleasure of improving his health.
Several of my friends have scoffed at my diet and think it is a load of rubbish. They may think what they like. All I know is that I am much healthier and so are my clients whom I have taken off gluten.
Thank you for a wonderful article and keep up the great work. Gill
I have had effects from grains that differs to effects that gave me IBS ie lactose, fructose. While there appears to be some sluggishness to gut mobility from wheat/gluten, most of my symptoms appear to be my skin and in inflammation at the cellular level – fluid retention, difficulty in weight losss. I get “hot” skin – feels sensitive, hot and uncomfortable to touch, with minor actual skin irritation visible. Tried gluten free, but it seems to be grains and to some extent carb sources from veg. Have had some testing with naturopath that showed a range of gluten factors but the rest has really only come from observation and dietary exclusion. Havent still got an explanation yet – anything more on carb and grains in addition to gluten?
Check out the fodmap diet 🙂
Grains can cause symptoms for a variety of reasons. For example, if you have microbial overgrowth in the small intestine, grains provide a food source for those microbes.
There is a strong connection between the gut and the skin. See this article for more info: http://chriskresser.com/the-gut-skin-connection-how-altered-gut-function-affects-the-skin/
What about pseudo-grains (not grassland seeds) like Buckwheat or quinoa?
Karen – I have that “hot” skin thing, too! It never occurred to me that it could be diet related. I eat a mostly gluten free, dairy free diet, but do eat a lot of eggs and have one cup of coffee (with cream or milk) in the morning…
I get hot skin too, but I’ve been off gluten and all grassland grains for 2 years. I never had hot skin (50+ years) until one day I woke up with it 2 years ago, immediately following the beginning of menopause (unbeknownst to me at the time). My skin gets hot and irritated (I can feel my nose pulsing, it’s so hot) when I eat anything to hot or spicy, when I’m in a warm room or outside in the heat without a breezy air current (72F or higher), and regardless of how warm it is, my face gets hit with a wave of heat sometime after about 9pm (usually around 11pm). When this all started I developed rosacea too. I follow a very clean ancestral diet, but I do eat buckwheat most mornings. I also eat dairy, primarily raw or cultured, but very little at night, and when the heat issue and rosacea simultaneously began, I was eating NO dairy, coffee or chocolate, but was consuming a lot of gluten (vegan-ish). Still haven’t solved what’s at the bottom of these conditions, but it’s very uncomfortable and frustrating. People keep referring to my issues as hot flashes (i.e., menopausal) and while they began with menopause, they are very different (no sweating, no waking up in the middle of the night in a pool of sweat). Mine are very temperature driven. Also happens if I have and emotional moment (tearing, crying, laughing (!)) and also a bout of coughing.
I recently found out I am gluten sensitive with a leaky gut. Daughter shows symptoms but is in denial. I have not recovered my health yet, but looking forward to feeling better.
Stopped eating gluten about 7 years ago. I had been off of gluten for about 2 years and had the blood test, which was negative. I’m 54 and have had chronic gut issues my entire life: extreme bloating, gas, pain and constipation. Also have Hashimotos x 30 years. I have gone entirely grain free and feel best when I am. I am having additional immune issues, so plan on instituting this again. Both my daughters do not tolerate gluten. One gets a herpetic type rash (she had an intestinal biopsy which was negative, but she had been off gluten for over a year prior to the test) and the other daughter gets joint pain and sinus congestion. The misery we all experience after getting contaminated should be felt by he authors of those books claiming NCIS isn’t real.
I gave up wheat (and sugar) 6 months ago and have never felt better! I did so for convenience after my daughters constant tummy pains saw me cooking wheat free for her as a trial. Turns out I benefited enormously too!! I have a question Chris, last week despite my great energy and general feeling of well being (and a 5 kilos weight loss without trying!), my doctor ran a blood test and says my iron and iron stores are very very low. Yet I eat a diet that is largely paleo, whole foods, homemade, fructose free, organic, grass fed meat (plus legumes and very few grains on rare occasion such as spelt). She wants me to take iron supplements but I’m wondering if you can suggest any potential causes for iron deficiency in a pretty high iron diet. I am in perfect health otherwise. Thanks Talia
The most likely causes in women would be SIBO, low stomach acid, or other gut issue leading to malabsorption, or heavy menstruation. Note that SIBO does not always present with gut symptoms, though it often does.
Can you tell me what SIBO means?
SIBO stands for: small intestinal bacterial overgrowth. Here’s a recent article discussing it: http://chriskresser.com/sibo-what-causes-it-and-why-its-so-hard-to-treat/
For many years I tried to get Naturopaths and Doctors to help me make sense of all the food sensitivities I had. It wasn’t until about 7 years ago I happened to read a research article about FODMAPs that it all fell into place for me. Virtually every single food I’ve had problems with is in that realm. I adjusted my diet and from the first day noticed a huge difference. NCGS is real and needs to be addressed more actively by medical practitioners. It’s a shame many of us need to be our own researchers to figure these things out.
I am a card-carrying celiac since childhood and I completely agree with this post!
I’ve found that I am lucky that my intestine reacts stongly and quickly to wheat (and curiously, but less so, to certain other grains) because it trained me to carefully* avoid them and for over a decade now (since mid-thirties) I’ve had robust health with also exceptionally strong immune and cardiovascular systems. No allergies or other autoimmune than CD, good skin, resistance to colds and flu, great blood markers and blood pressure, healthy weight, metabolic resilience… 🙂
Taking the idea of this post a step further, is it possible we’ve been looking at CD upside down? After all, isn’t there usually some evolutionary advantage to a genetic variant that has persisted in a significant part of a population? Now that wheat consumption in the western world has reached a high level, more people genetically prone to CD are expressing it. Perhaps it will protect them from the less obviously related but dangerous effects of wheat throughout the body by stopping them from eating it or at keast not eating it in significant quantities consistently?
I am celiac and it certainly looks like I became exceptionally healthy after 35 or so because of that condition.
Thanks so much for this post.
*I don’t need to be as careful in some countries, like Greece, where the food is mostly locally sourced from small farms and local fishermen (except in high tourism season) and nothing is “enhanced” with wheat or direct gluten in traditional restaurants. I was there recently and after asking at the first couple of “tavernas” if their sauce or dip or whatever contained gluten or wheat, I stopped asking since I was drawing blanks. It’s never occured to them! But who knows, if their government starts subsidizing wheat, maybe it will occur to them too…
I’m Greek, but I live in the US (Bay Area). Tavernas in Greece often fry their fries in the same oil as floured food, so they’re not to be trusted. A few restaurants don’t, but they have to be asked explicitly. All their small fish (e.g. sardines, which are very popular there), are floured too. Their souvlakis are now using mustard (in the olden days they only used oregano and lemon), and that kind of (cheap) mustard has corn in it, and often wheat for thickening. The only safe foods to eat in tavernas are actual meat without sauce, tzatziki, and salad. For everything else, you can’t be 100% sure.
Also, the way to ask Greeks about gluten is to simply ask if the specific dish has any flour in it or not. If you ask them about “wheat” or “gluten”, they won’t know what these are. They always refer to wheat as “flour”, and not by its actual name. The only times they call wheat as wheat (“stari”), is usually when they have… funerals, because it’s the traditional food to share among the crowd in such events (boiled whole wheat grain, looking like rice grain). For every other usage, for them the term is equal to “flour”.
As for the term gluten, 95% of them would reply: “what’s that?”. My mom fell off her chair laughing at/with me when I told her I have “koiliokaki” (celiac disease, English word comes from the Greek word). She found the term really funny (means “bad tummy” in Greek), and she said that she never heard before of either celiac or gluten, and that I’m probably imagining it.
Go figure… Especially since she has all the marks for gluten sensitivity/celiac herself (osteoporosis, arthritis, eczema, constipation, hypothyroidism…), but she won’t listen.
Thanks for the warnings Eugenia, you’re right of course about the flour used in frying some things like small fish. You can ask for them without flour and I’ve always found they are happy to oblige.
I meant they don’t seem to add flour to everything like is done over here, as a thickener. Also, either because most of the meats are local or because the government just hasn’t allowed it, there’s no ‘filler’ (which is allowed in processed meats here and while it’s mostly saline solution, there’s sometimes ‘vegetable protein’ – which is usually gluten).
One set of grandparents are from Greece and I have relatives there, I speak the language and have visited for decades. I started asking about sauces and such recently, but as I said, they have no clue. “Why would they use ‘alevri’, that’s not how to make tzatziki!”, or skordalia, or melitzanosalata, or… If it’s not in the traditional recipe, it hasn’t occurred to them to use flour as filler or thickener…yet. So it’s easy to avoid wheat, you just avoid things that are obviously made of flour. Whereas here, I find it harder since a lot of foods have it hidden. It’s easy in the supermarket, but at restaurants I have to ask about every single thing, salad dressings, everything…it’s tiring, eh?
The only trouble I have in Greece is in August, until I realized the food supply isn’t of course local after 15 million tourists descended on the place all summer, so I’m very careful in tourist season!
You’re grandma isn’t from Athens or Thessaloniki? They seem pretty aware of ‘koiliakous’ (people with coeliac) in the larger cities. Many areas of the country of course don’t have any, so they don’t know. My family has a history of it, but members of one branch, from Lamia, had no idea what the rest of us were talking about. “What do you mean you can’t eat bread? Psomi?! Xristos kai panagia!” Like that 😉
Sorry Eugenia, I meant your mom. I was thinking of my own greek grandma – she has a lot of those symptoms too, but she stubbornly prides herself on not having the “koiliaka” troubles that some of us do. That her own infirmities may also be from wheat is just not acknowledged!!
I’m from Preveza, originally from a mountainous village there, so people there don’t know about celiac. 🙂
Regarding sauces: indeed, except besamel, their sauces have no flour. However, most of their processed meats and salamis do. Also, even if you asked them to cook the fish without flour in restaurants, you’ve been glutened no doubt, because they use the same deep fryers, or the same grill. There’s no avoidance of gluten in a fish restaurant I’m afraid, while it’s easier on a meat restaurant.
Yes, that makes a lot of sense. I do find though that when I’ve been really ‘clean’ of gluten for a while, I can tolerate the small amounts (mg levels usually) from various types of cross-contamination. Do you notice any such effect?
I didn’t know about the salamis and such, though I’ve eaten local sausages (especially in the mountain regions of Krete and Evia, in Volos and on Taygetos) and didn’t have a problem. Would you say the traditional preparations vary from region to region?
Also I’m convinced that all that greek yogurt, garlic, onions, dandelion greens (“horta”!) etc. do wonders for my gut and increase my tolerance (echoes of Alessio Fasano?). I use a lot here too, especially in the last decade or so of conscious, careful gut-minding 😉
Sigh. I just feel so physically good when I’m there, probably because the family there generally cooks ‘clean’ as we call it, but even when traveling to islands like I did this May (Santorini, Crete, Evia) and eating in tavernas all the time, it’s easy to keep clean. Basically avoid bakeries (and boy that’s hard, they’re on every corner!!) and some fried foods. With all the rotisseries everywhere and the abundance of baked and grilled fish dishes and vegetable/olive oil dishes, I don’t feel like I’m missing out at all though. Plus, they still make fresh french fries at most places. Sigh!
It’s a shock each time I come back. Within days, some hidden thing I forgot to check (being in relaxed mode after the trip) has triggered intestinal upset and I need a couple of weeks to get back to normal.
Preveza, wow, heroic antecedents there! Androutsos, Grivas, nearby Souliotisses/Horos tou Zalongou? 🙂
FYI, there are a few outstanding Greek restaurants in the SF Bay Area that are incredibly knowledgeable and sensitive to gluten issues. Evvia and Kokkari are fantastic, and almost their entire menu is gluten and grain-free without modification, with a few exceptions. Their servers are hypersensitive/knowledgeable. That said, I still agree with Eugenia that it pays to be cautious. For frying, most restaurants use transfats (like rice bran oil), so I avoid anything fried on the menu at all restaurants. The potatoes at those 2 restaurants are yummy, but I order them oven-roasted with olive oil. They’re first prepared that way, then flash fried before serving, so they just skip the last step for me. Sadly, I have to skip the calamari all together.
I only order fries at a restaurant that offers tallow fries and where I know freshness/health are paramount — Belcampo is one, but you have to ask for tallow fries, they have regular fries too.
I used Entero Labs in 2009 and was told that I had genes that predispose me to a gluten sensitivity (though no Celiac disease). Went gluten free afterwards and saw significant improvements in my skin and overall health. I also need to be dairy and coffee free. I’ve had parasites, late stage Lyme, and a mycoplasma co-infection though so I imagine that has been significantly impacting my ability to digest, detoxify, and my immune system’s relationship with foods. Would be interesting to see more about how chronic unresolved infections play a role in the development of food intolerances … as you mentioned many of the people who use Cyrex are already sick.
I did the Cyrex Array 2 and have no permeability ie. no LPS showing up in blood, however, every time I do the lactulose/mannitol test it shows up with a high level of leaky gut. How do these two tests correlate?
thank you for sharing your clinical experience with NCGS.
Before testing…can an individual be gluten free or do they need to consume gluten before testing? If so, for how long?
My daughter (8) has gluten sensitivity. She was about 5 when it all started – always pale, always tired, and started getting infections that wouldn’t heal. She would physically gag on food, and extremely fussy. Bloated stomach and gas that would clear a room! It took 4 different doctors who didn’t believe me. One Dr even said she had a chronic case of strep throat. My big concern was to definitively establish that she didn’t have celiac disease so that I knew if she had gluten occasionally it wouldn’t hurt her. Now I am concerned that by giving her treats (with gluten) this could potentially put her in line for an auto-immune disease later in life. Chris, what is involved in getting the test done as shown above? I am in New Zealand…
Look up Dr. Rodney Ford from Christchurch. He is probably best expert in the field in NZ.
He has written couple of books on the subject.
It would be difficult to send a blood or stool sample to the US at Enterolab or Cyrex labs *in time* (these tests are time sensitive). I’m no doctor, but It might be easier to try to get to the bottom of this the old way: get your daughter in a completely GF diet for 30 days (avoid gluten-free baking goods too, since they’re as processed), and then on the 31st day, get her to eat a bit of wheat pasta. If she reacts in ANY way, she’s intolerant to it and shouldn’t have any gluten at all from that point on. Consult your doctor(s) first about this suggestion though, since it’s a child we’re talking about.
The Cyrex Array 3 is a blood draw, so unfortunately it’s not possible to do from overseas. However, as I noted in the article, an elimination/provocation challenge is still considered to be an accurate way of assessing NCGS.
I’m in Australia and did my cared blood draw here and sent it to the U.S.
An interesting article as always. Do you know how the reference range of the Cyrex test was determined and how many individual’s data were used to construct it?
I used Enterolab 12 years ago as my proof that I needed to be gluten free. The change in my health was close to a miracle. The list of symptoms was long and they either disappeared or greatly improved with a gluten free lifestyle. The main reason I looked into gluten was because of a very painful peripheral neuropathy. Still have some numbness, but no pain! I have to be careful not to get any gluten even from cross contamination. Life is good.
Anne have you looked at B12 deficiency for the remaining numbness? Closely linked to gluten issues (malabsorption). Chris has 2 excellent articles here about it.
Yes, I take methyl B12 and some other supplements that are said to help With PN. After going GF I found that my blood sugar after eating was over 200. For the past 6 years I have used low carb and now keep blood sugar under 100 all the time. But the greatest improvement in the neuropathy came during the first 18 months gluten free. I wish it would completely resolve but I think the damage was so great that my feet will probably never feel totally normal.
I have had unexplained severe pains in my wrists. Peripheral neuropathy was mentioned, though never diagnosed (numerous NHS tests failed to find out the problem) The pain was horrendous… Worse than any of my broken bones. Going GF helped significantly, but I can also really recommend going to a high end acupuncturist (only go to one who comes highly recommended and be prepared to go back regularly for some time). All numbness and tingling finally gone!
when science and doctors were not able to help me with my NSGS in year 2000 I had to turn to alternative therapies. It was difficult to make the decision that from now on I have celiacic disease (that just does not show in the conventional tests). Before I had believed that doctors know it all. After (I recovered from difficult atopic skin, tiredness, continuous stomack problems etc.) I have started to respect alternative therapies along with conventional medicine.
Hi Chris, I suspect I am gluten intolerant although never diagnosed. I have graves disease that flared just prior to getting pregnant. I wished to breastfeed as long as possible so decided to try diet. Breastfeeding would have been cut off early with graves medication or treatment if it had have relapsed. That, and they’re very nasty treatments.
I’m mostly paleo and always gluten free and I’m still in remission 2 years on, even though my unsupportive and skeptical endocrinologist advised me that ‘statistically’ the graves should have returned by now, and has advised me that diet plays no part in graves.
Fortunately I went in to his appointments having done a lot of research, so while he was being judgemental, I was determined to do things my way. I gave him the details of what I was doing so that, if he chose to, he could pass on the information to other patients.
Many family and friends don’t understand the issue, and think I’m being too fanatical about it.
I get pettechiae on my forearms when I eat gluten. Would that be an example of a reaction to “Transglutaminase-3, which is expressed primarily in the skin”???
It could be. Or it could be a less specific “gut-skin” reaction that is not mediated by tTG3.
I myself did the 30 day challenge (I am a diagnosed Hashimoto’s- 15 years). Did not see much of a difference, introduced gluten for 1 day and was instantly constipated. Tried again- gluten free 1 week- ditto the constipation after 1 trial of re-introduction. My father is gluten intolerant and has terminal tremors….his physician labeled it “benign tremor” but I know better. My 16 y/o daughter also tried the 30 day challenge (very unwillingly) and now does not tolerate ANY gluten. Reacts immediately very violently with cramps, diarrhea, etc. ALL of us have tested negative for celiac. My household has become gluten free. My (former) physician did not believe in the gluten intolerance. Another positive note, since going gluten free ( 1 year now) I have had to reduce my 15 year dose of thyroid meds twice!
30 days challenges are a very dangerous and bad idea.
The less gluten you have the more intolerant you become. Google it and look a peoples stories. I’m gluten intolerant and becoming far worse – it used to only upset my stomach so I cut it out altogether. You lose your immunity fast to gluten and then your immune system mobilizes to fight it and makes you very sick in the process. Seriously, it’s time you google the effects of not having gluten. Don’t create that situation if you don’t have to.
It was amazing to witness how fearful for my health my family were when I decided to eliminate gluten from my diet and despite my assurance that I was getting all the nutrition I needed from the abundance of vegetables and good meats. It was also interesting to see how little they treated it with any degree of seriousness even though they witness and even acknowledged the vast improvement in my health. For them it was considered a ‘choice’ even though the consequence of eating gluten caused me ill health. Not sure how you could consider that a ‘choice’ if illness follows.
It all came to a great halt after my dad ordered me chips that he swore were cooked in seperate oil from foods cooked in flour, but in fact weren’t, which ended up in a week of my being terribly sick with flu like symptoms, a migraine that wouldn’t budge and finally double vision which had him driving me to hospital. After that, they no longer considered it such a choice and finally took it seriously! Made my life easier after that!
People don’t understand unless they’ve seen it for themselves.
i have suffered from depression and anxiety for most of my adult life and treated unsuccessfully with ssri drugs. It never made sense to me. A few years ago I had two serious infections that required iv antibiotics and my depression and anxiety became much worse. A doctor kept laying in the psychiatric drugs with no avail I got fed up and saw a functional medicine dr who diagnosed systemic candida and IGg sensitivity to gluten, dairy and yeast. I have been gluten and dairy free for 3 years and have no depression or anxiety nor do I take any drugs now.
“And for reasons that I do not fully understand, they do so with an almost religious fervor.”
Because large food companies & Big Ag lobby groups actually do hire PR firms to create fake FB profiles and make pro-wheat comments. Just as political campaigns do. There are a large number of social media interns doing it. You can find people on LinkedIn who call themselves “community managers” and “social media advocates” or similar titles – this is what they do. It’s no secret.
I agree. Business is business. The battle is not just taken up on social media like Facebook. Case in point:
The book “Grain of Truth” by Stephen Yafa was published just a month ago, on May 12, 2015. If you go on Amazon and look at the reviews, the “Editorial [not a customer] Review” contains the full Prologue to the book and is definitely the longest Editorial Review I’ve ever read on Amazon. Quite a push for the book.
I read the book and reviewed it June 3rd. You can read my review posted under the name Glenn A.
Essentially, I said the book pretends to speak for the other side, against the likes of William Davis’ “Wheat Belly”, but unlike Davis’ book, it presents no science, and instead is mostly a defense of the budding artisan milling and baking community which seems to be suffering from the current gluten scare. It’s full of interviews with millers and bakers.
Yes, there’s good things to be said for ancient grains, improved milling, and especially for 24-hours-plus ferment time under the influence of sourdough starters. Maybe there will be way less NCGS if one totally converts to eating artisan baked goods. Maybe. No tests yet. Just testimonials.
The problem with the book is not the content. It’s the drastic shortfall of the claim in it’s deceptive subtitle: “The Real Case For and Against Wheat and Gluten”. In no way does this book take on the same subject in the same way as “Wheat Belly”.
There’s another book out there, also taking on the gluten sensitivity issue: “The Gluten Lie” published only this April.
Neither of these books were written by doctors or health professionals. Both are the work of professional writers from other fields. Neither takes a scientific approach to provide proof of their claims, but they net out as negative on the issue of gluten sensitivity. It’s anyone’s guess whether these took funds from the wheat industry, but they certainly are not what you would call scholarly works. Who funds these? The writer/publisher alone?
Here’s the Amazon page:
I self diagnosed gluten intolerance as it made me sick and i also have crohns disease. best choice i have ever made and my whole family is off it now because my husband has the same reactions as me. when my 2 kids came off it, suprise suprise, all their rashes and skin problems ceased.
If you have Crohns, do make sure you have your B12 and ferritin (iron stores) checked. My husband had what’s called a “capsule endoscopy” where a camera is swallowed and passes through the gut, taking photos as it moves along. The far end of the small intestine was inflamed, which we were told is typical of Crohns, and this is where B12 and iron are absorbed. The strange thing is, his hemoglobin levels were fine but his ferritin levels low, also B12. And, he cannot tolerate gluten.
This is a BAD decision. The more gluten you don’t have the more your body can’t fight it if you get even a trace of gluten. Google it. Your poor kids are losing their immunity to it when they don’t have it. They shouldn’t have it only if they show they can’t tolerate it.
Unless it’s really chemicals that are causing the issues. Then your just sentencing the kids.
It may be possible that it is not “gluten” that you are having an issue with but glyphosate or other chemicals in our food supply.
Some many people who thought they had issues with gluten, have no problems eating massive amounts of wheat products when they are on vacation in other countries. It is extremely common to hear about the “trip to Italy where I ate pizza and pasta and bread at every meal with no issues”.
It is true. Used to think it was gluten. Health issues, sinus headaches, vomiting and feeling like crap. Turns out I can eat wheat in Europe NO problem. What’s the difference between U.S. wheat and European wheat??? There in lies the the answer…