3 Reasons Gluten Intolerance May Be More Serious Than Celiac Disease

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Recent news stories have downplayed the significance of non-celiac gluten sensitivity, even going as far as suggesting that it doesn’t exist. But a growing body of evidence has proven that gluten intolerance is not only real, but is potentially a much larger problem than celiac disease.

non-celiac gluten sensitivity
Non-celiac gluten sensitivity is more common than once thought. iStock.com/jeka1984

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:

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.

gluten chart copy

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.

#2: Current Cultural Attitudes toward NCGS Mean More People Will Remain Undiagnosed

There has been a big backlash in both the mainstream media and on social media channels against the idea of gluten intolerance. Despite overwhelming evidence to the contrary, uninformed journalists and armchair Facebook scientists continue to argue that NCGS is some kind of widespread collective delusion—simply a figment of the imagination of anyone who claims to experience it.

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:

  1. 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).
  2. 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.
  3. 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.
  4. 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).

Finally, it’s worth pointing out that many people that are intolerant of gluten are also intolerant of other food proteins found in foods like dairy, eggs, and unfortunately, coffee. Studies have shown that about 50 percent of patients with CD show intolerance to casein, a protein in milk. (20)

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.

633 Comments

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  1. My 4 year old daughter tested positive for high allergy to gluten but celiacs test and endoscopy showed no damage. Do you suggest she take array 3? Or just continue gluten free diet?
    Thanks!!

  2. Hi Chris,

    Thanks for this article.
    I think it is easy to downplay something one has not experienced first-hand.

    I think its important to say that I am sub-saharan African, and it would seem unlikely by medical science that I would react to gluten.

    But I have had bouts of Chronic re-curring illnesses that defy proper medical explanations- from recurring fevers (monthly with no known cause, chronic severe leucopenia, polyathralgia, burning hands and feet, dry mouth and eyes (intermittent for months) , chronic dermatitis and very severe iron deficiency anemia to mention those I can remember. But somehow despite many tests , there has never been any conclusive diagnosis.

    I write this because I noticed a trend after consuming wheat products (and milk) which usually results in hospitalizations and critically high inflammation markers CRP and ESR
    I have since gone off gluten to the best of my ability , not only did most of the symptoms including eczema of over 15 years clear noticeably but I dont have as many fevers nor am I constantly exhausted.
    Im not sure what form the mechanism of action takes in my condition, but it is obvious to me that wheat and its products have some definite effect on the illnesses I experience, so much so that I dread to do a gluten challenge

    • Yes …I had high CRP readings too……the doctors have flagged this in my medical notes. I wonder if the gluten caused this ?? (my doctors think not….they put it down to infection…)

  3. Hi,
    So I just got my Celiac blood test back and of course they are negative, but I am 100% sure I’m gluten intolerant among other things! I wish it was Celiacs so I could just ell everyone that and they would leave me alone. But I’ve found I still have reactions to “gluten free” products. I assume from this article that means I need to cut out all grains and milk products?!? What a dud! I’m glad I found your article and wish more doctors were as informed. I think my son has the same problem as me. It of course is more difficult to convert my 8 year old to gluten free diet especially when his pediatrician says his Celiac test was negative. I assume you don’t know, but do you think non celiac gluten intolerance is hereditary? My other son is fine with gluten.

    • Yes, indeed, it is hereditary.
      As I have commented in earlier posts, the thing to do is NOT to simply replace gluten things with gluten free things, but to actually go on an anti-inflammatory diet (also called the elimination diet) for 1-2 months (depending on how bad your leaky gut is) and then slowly reintroduce things to see if you have a reaction to other things (such as rice, potatoes or egg.) 50% of gluten intolerant people are also casein (milk protein) intolerant. The better thing to do is to get the Cyrex test done for the major food sensitivities before you do this along with their leaky gut test (arrays 3 & 4?) Insurance won’t cover it but it is gold because you will know for sure. Get your sons tested, too, so it is in black -and-white. No denial. It may seem so hard to change the diet at his age BUT SO IMPORTANT. I had to do this for my children at ages 9 & 11.
      I am trying to figure out how to publish a book I have written from the mother/cook perspective as I know that the change is daunting. Our family made the change six years ago. The kids had a more gentle elimination diet for about 6 weeks which only cut out all wheat products, soy, milk anything containing any derivative of any of these. The reason is simply that as they were so much younger their guts were less leaky (sorry for graphic-sounding terms but only way to say it.) My book is completely practical and stresses the importance of looking at food completely differently as we all go forward in this difficult world, leading the numbers which will eventually be discovered to be celiac and NCGS.

  4. Dr. Kresser, I live in Houston TX but where/how can I take the Cyrex Labs Array 3 test?
    Thanks

  5. I could no longer feel from mid-calf down and experienced three life threatening infections in a toe that had other problems. For a totally different reason I started taking extra Biotin and began to feel something different in my feet. So, I started researching ‘Dr. Google’ as my Doctor called it. I came across Gluten Intolerance, which fit me from since I was little. I started a gluten free diet and the feeling in my feet continued to get better to the point that I can now walk around our old neighborhood without needing hiking sticks to feel like was not about to stumble. I first went gluten free at 66 years old.

    • Richard-
      I think I am you.
      How long did it take for you to notice a difference in sensations in your feet? Do you think it was the gluten free diet, the biotin, or the combination?
      Thanks in advance for your response.

  6. I love this article! I learn something new everyday!

    My diet all my life from kid-late 20’s was pizza, pasta, and bread. I was normal weight and very energetic always, though I started having issues with psoriasis, it just sprang up out of nowhere in my early 20’s. Then in my late 20’s It just hit me like a brick wall for months i just felt awful and sick constantly, I gained prob 25 lbs, had no energy, weak, really moody all of a sudden and somewhat depressed, horrible paralyzing migraines would come 2 times a month and my period was horrific! It seemed to be getting worse and worse as time went by. My nails were always nice looking now they were brittle and clear. Nail health is a sign of being mal-nourished I remembered. I could tell my body wasn’t getting the nutrients I needed so I did my own research and I decided to change my diet, I stopped drinking beer, eating pizza, bread etc. and within a week I felt so much better.

    But I was still having issues.. maybe it was all the “gluten free crap” i was eating as well 😉 I was desperate..I don’t like docs to begin with but i went to a gastrologist and he wanted me to take several test that were very expensive and he wanted me to eat gluten for a whole week to take a test that may or may not tell me. But I thought what would if matter what this dumb test said if there isn’t a cure..?? then prescribed me meds to help ease my stomach pain. Right then I knew I was at a pivotal point in my life. Its so sad how doctors are truly making us sicker, taking meds would destroy my stomach lining even more and there was no way I was going to put my body through eating gluten again when I was somewhat feeling better. I kept doing more and more research, I learned that gluten destroys your cilia(how your body takes in nutrients from your food) I def had killed it all that is why I had been feeling so awful.

    So I ignored the doctor i felt in my gut (no pun intended) that his advice was not right and I went to a holistic doctor. He put me on a strict paleo diet. No grains, no dairy, no sugar except some honey and real maple syrup. -This is the key and closest to a cure. A balanced PALEO diet/clean eating. I’ve been on paleo for 2 years now and i feel like my body is 90% recovered now, thats how bad gluten and other shitty by products found in food are.

    What people don’t understand is it takes weeks, months even years for your system to truly recover if it can. If i ate too much rice sometimes it would inflame my intestines and i would be sick for a week or two. That is why i disagree with all these studies saying its all in peoples heads even after they stopped eating gluten they still have stomach issues. well duh..Its a complex system, your body has been through hell and in a prolonged period of (dis-ease).

    When I was 28 and remember having horrible joint pains as well and now i have no pain. My psoriasis is completely gone as well. (I look at these commercials to help tame psoriasis and its discusting all the side effects, this shits only making you sicker!!! dont take the pharma pills!!! but thats just my opinion. I am very thankful of reading this article knowing i am working on preventing myself from having theses other serious diseases you talked about in the future. Scary to imagine. My migraines are minimal and not near as debilitating where I would use to think I needed to go to the hospital. They occur every few months but i think it is more associated with stress/hormones. My period is 100 times better as well.

    All I can say is do research research research as much as you can from all different points of views. Doctors are heros for the most part but I can’t put my trust in them fully because no one is infallible and we as humans don’t know everything.

    • @Victoria – Wow – really similar story. Loved bread, pizza, pasta. Used to crave it – and sugar. Really sporty and energetic. Used to get really sluggish sometimes (food coma) after eating a massive carby meal but generally okay (but always TERRIBLE period pain). Then it hit me in my 20’s – psoriasis, adult acne, sluggish and I put on 10 kgs.
      Cut out gluten, got so much better. Taking gluten out mainly helped with my concentration, energy levels and psoriasis. Then I cut out dairy and eggs and that was the icing on the cake. Skin problems (acne) and period pain completely gone (!!!). I used to take the most hectic anti inflammatories and went to hospital for pain and ovarian cysts etc. I kept asking doctors what I could do and not one of them suggested omitting anything from my diet for any of my symptoms.
      Youre right, listen to your intuition and research research research.
      Good luck to everyone out there 🙂

  7. I have had a rash on my face and upper neck for the last 3 years – and nothing I do seems to help get it to go away. The face thing is new – but I’ve had excema on my hands and to some extent (my arms) for as long as I can remember. I don’t think I’ve had a problem with Gluten in the past – but maybe age changes things like that. But a friend at Church said that she also had excema and as soon as she went Gluten free – the excema went away. I have bad allergies as well. Do you think Gluten could really be the culprit? I eat alot of biscuits, bread and pizza – and sometimes have a few beers.

    How would I go about getting the special test you discuss in this article?

    I am really ready for some relief. Any ideas or help would be greatly appreciated. Thanks! Melissa…

    • Don’t waste your time or money going through a test, it doesn’t matter the results. You get the real results by what you put in your body. I would recommend you go on a strict paleo diet. I’ve been eating paleo for 2 years now and feel like a whole new person. I used to have psoriasis, gluten intolerance and after going paleo it went away. Same with allergies i used to have horrible allergies and sinus infections now i never get sick.

    • Hi Melissa.

      Try going off the breads biscuits n pizzas ( and cakes if you love cakes as I do). If gluten or wheat products are the culprits you may feel so much better as I did, but it may not eliminate for good the all the health challenges. You may need to occasionally try this drop that. I try to do natural products as close to the
      Farm harvested product as possible and I avoid most things that have gone through processing. Salads and veggies help me a lot.
      Good luck

  8. I literally laughed out loud when you spoke about ‘gluten free haters’ voicing their opinions on the subject with a religious fervor, as it is SO true!! Which I will never understand either.

    My earliest childhood memory is of sitting on the toilet screaming from the excruciating stomach pain. My Mom tried everything, but because Celiac and gluten intolerance was unheard of back then, (I am 53) my condition continued to worsen and led to auto-immune diseases, migraines, constipation/diarrhea…the list could go on and on.

    I have been gluten free for many years now, but unfortunately my stomach pain, bloating, headaches, and other ailments continue to plague me. As a matter of fact, I am home from work sick as I write this.

    As much as I hate to, I think coffee will have to be eliminated from my diet as well. I gave up dairy long ago, as the reaction to that is just as bad as my reaction to gluten. But coffee…oh man I love my coffee in the morning. It’s time though…and I am committed to give it a shot. Anything is better than living with the pain, depression, (which is a new development) and fatigue that is a part of my daily life.

    I have people counting on me as the main bread-winner and caregiver, so I need to do whatever it takes to get control of my symptoms.

    Thank You for your recommendation of giving up coffee as a way to manage this complex disease that effects the entire body, not just the gut!!!

    Sincerely,
    Brenda

    • You should try to replace your coffee with Organic Matcha Green Tea. It’s been a life saver for me with so many health benefits as well.

    • Yes …..I have found that coffee is a problem too (I am fine with tea)
      I also seem to react to coconut. I lived on meat and veg for a while…..did fine on that……introduced other things slowly….if you do that any other problematic foods will show up. google elimination diets…..I still do best if I eat mainly meat and veg, I am also pre diabetic …this diet works well for that too

    • Did you tried eliminating nightshades from diet, its alkaloids can build up in your tissues and can starts to causing you all sorts of troubles.

  9. Hi Chris, great article, i was diagnosed end of october with Allergan Gluten: 7.33 igg and was informed it should be below 2.0 and that it is a severe allergy. It seems very general, compared to your list and wondered what category that may encompass? And is there a scale of how high an allergy for gluten can reach? Where am i at on the max? i actually went through a horrible year, where my health seemed to deteriorate quickly and get worse to the point where my family and friends thought i was sick with something very serious. They thought i must of had some form of cancer. Migraines eventually became a daily occurence & what i initially thought was food poisoning basically became a daily occurence. I have always been athletic and in shape and my body changed suddenly around the center of my body/stomach / major bloating 24/7 and people thought i was pregnant, but not just from how large my stomach became, but i would be running to the bathroom in the middle of lunch or dinner vomiting or other stomach upset. also many times i would be up all night with a severe sharp pain in the center of my stomach , i would sometimes pass out from the pain. I was extremely fatigued all the time and my job overall became in jeopardy despite me working soo many hours. As my health became so bad, i finally made that appointment to see the doctor in october. Had every single test you can think of. When the results came back, i was shocked to learn about gluten and that you can be allergic to it. I was informed, do not eat any gluten at all. Since end of october , i came off cold turkey and my body quickly changed, stomach back to normal, i honestly feel amazing, no more migraines, stomach pains, stomach upset, i have my energy back. But discovered i react to cross contamination, the worse seems to be consuming anything that touched what a bagel touched. Or a gluten free pizza that was baked in same oven as a pizza that has gluten. (Both, i am instantly sick: vomiting or other stomach upset & stomach bloating. Note: i have found some things to be much more severe than others, the above most obvious, why i am curious about your breakdown) . (Also, i had/have different reactions, so wondered what different types of gluten caused what symptom? ) but i have to be very careful eating out at restaurants or at parties, and inquire about preparation & cross contamination. I never react when i eat food at home from food shopping: gluten free guaranteed products. It has to have that label. As for friends and family and even my boss: very supportive, they know the hell i went through, they really thought i had something serious: ie high stage cancer, but knowing how sick i was, they are very supportive. Most restaurants are as well, and many are gluten conscious..including cross contamination, but some are not and assume you are on one of those gluten fads despite having to explain 3 times how serious it is. And that i wish i could eat it. (I love food and used to eat everything & anything..or used to). I even had people say to me there is no such thing as a gluten allergy, only a sensativity, unless you have celiac, then its an allergy. Why do people have this info or think this? The docs did do an endoscopy & colonoscopy end of December and i was informed i do not have celiac. I was off of gluten for 2 months prior to test, but was informed that should not affect results. Is this true? Anyway, chris, thank you for raising awareness, it is much more prevalent than ppl realize, my doctor said that for every person that comes in with just some of the symptons i had, she includes gluten testing every time because a huge number..40% come back positive with the Allergan Gluten.

  10. Maybe, just maybe the problem for many is not “gluten”?

    Why is it so many “gluten intolerant” people (my wife for example) can travel overseas (France, Italy, Australia etc.) and eat wheat products with abandon and have ZERO issues??? All wheat has gluten no matter where it’s grown so this has to mean her issues are NOT gluten related.

    What is difference with our (USA) wheat products and wheat products from other countries? GMO? Roundup? other chemicals? Something else besides just gluten has to be the cause…

    • Agreed! There’s this documentary on Netflix called “what’s with wheat?” This explains a lot, and made me decide to stop eating any wheat products.

  11. Hi! Thank you so much for putting together all this information! It’s definitely helpful; I didn’t know that there were so many different compounds people could react to. I’ve been gluten free for about 2 and a half years; the main reason I began following a gluten free diet was due to acne (I’d had bad cystic acne for years). I was also having some bloating/digestive issues. I also had bad back joint pain for a few years as well; they only stopped after I stopped eating gluten (I noticed a difference a few days into my new diet).
    It’s interesting though because no one else in my family has had bad acne or any issues with gluten, at least that they’re aware of; and there’s no known history of celiac disease in my family. I don’t have celiac, but am more of a self diagnosed gluten intolerant. Do you know where I could take the test you talk about? Or if the skin patch/needle allergy test is effective? I’m also wondering if you know anything more about the links between join pain and acne and gluten. Thank you so much!

  12. Hi!

    I was gluten free (and dairy/egg free, because I’m vegan anyway) for 3 months, from Late September to Christmas…

    When I ate gluten during the holiday season (2 1/2 weeks), I didn’t really notice a change. However, recently (about 1 1/2 weeks after being gluten free again?) I had a few days with quite bad indigestion… it has since gone away.

    Am I gluten intolerant or not? Are the symptoms supposed to show up right away? Because from when I started eating gluten at the beginning of the 2 1/2 weeks, to when I had my stomach troubles (after an additional 1 1/2 weeks gluten free) was about a month. I feel like if the symptoms were connected they would present much faster.

    Are my occasional intestinal tract issues completely unrelated then?

    This has been bothering me for quite some time…

    • Gluten gives me migraines. If I eat gluten… the migraines show up 3 or 4 days later…….this does make very hard to work out what is going on (and gluten turns up everywhere….beware “malt” etc.) From what I can gather…it is possible to react to almost anything……but a google search will reveal the most likely suspects

  13. Hi Chris,
    Thank you for the info!

    I have two comments. One, thank you for having citations. It would be great if there was a list of them on the page so I didn’t have to click each one. Two, to make a comment, I had to scroll past the comments allllllll the way to the bottom. Since your blog is popular 😉 it took a while. Mobile browsers don’t have a way to do this like pressing the [end] button on a computer.

    Thank you!
    Alex

  14. I had migraines – real bad. Doctors treated me for depression – prozac …which didn’t touch the migraines. I am also prediabetic..was told I’d do better with regular food intake …told to have breakfast. I chose to have something easy to prepare for breakfast – I chose bread rolls….dear me was I ill. That was the first clue that I was NCGI. Doctors tested for celiac – came back negative. I paid for private testing – I have IgG antibodies for Wheat/ gluten (and Soya) Interestingly I have a close relative who does have celiac – wonder if it is genetic. I went gluten free anyway – doctors do not believe me but I am doing hugely better, weaned myself off the prozac (doctor refused to help with that too) I made loads of mistakes – gluten turns up all over the place and I didnt get any help because the doctors do not believe me…but I hardly ever get headaches now let alone migraines….oh yes and prediabetes is still being controlled with a low carb diet.

  15. I’ve been experiencing gluten intolerant and Celiac Disease symptoms since September of 2016. From itchy rash, mentally and now my gastro. I’ve recently gotten a leaky guy and it’s been so hard. Today I go to my doctor and he says all my blood tests are good and I am healthy. How? If I feel so horrible. I’ve lost a lot of weight trying to figure this leaky gut on my own. My doctor didn’t even flap an eyelid when I told him of my weight loss and leaky gut. I am frustrated. I know it’s not all in my head. I was a pizza and bread lover. These is the last thing I would ever thaught would happen. Before September I also felt “gluten free” was a fade. Boy was I wrong:/ At least he agreed to referral me to a gastroenterologist. Is there any doctor in the USA that can test me for gluten sensitivity? Unfortunately, I live in Las Vegas and I haven’t seen a doctor that truly cares.

  16. I have a question. I get a numb face after eating gluten and I start getting dizzy. I didn’t even realize this was because of the gluten until recently. I was already avoiding gluten because it majorly upsets my stomach and then found that the little I was still getting was the cause of the facial numbness within a few mins after I ate certain things.
    I saw on other sites that the more you don’t have gluten the WORSE it gets when you get trace gluten.
    How can I avoid gluten but take just enough to not become completely gluten intolerant? Right now I can have very little because I’ve avoided it for months. I think it’s the soy on rice that is making my face numb when I eat it and for about 20-30 mins after.

    • I have been strict GD for 8 yrs and I react really badly to soy sauce! My face breaks out in what is like hives.ive not seen anyone else who reacts to soy sauce like I do. I use coconut amino at home for stir fry.It’s those fajitas I can’t seen to say no to and they use soy sauce, I believe 🙁

      • Unfortunately, normal soy sauce is chock full of wheat. So it’s no surprise you reacted. Some of us cross react with soy too, or so I’ve heard. And milk. Milk ingredients seem harder to avoid sometimes than gluten. I cross react with milk, what a pain.
        Celiac, and GF for 8 years, here too. And don’t forget to check your cosmetics. Glutens hiding in there too, bah! Dermatitis Herpetiformis, (skin celiac), is no fun either.
        Good luck with the avoiding!

  17. Yes. I couldn’t even believe it myself. I was tested for Celiac (blood and biopsy) and it came back negative. I was a former bread addict. I finally tried removing gluten over a year ago after being diagnosed with lymphocytic colitis. This was life changing along with removing soy and reducing coffee which has a gluten cross reactivity. Gluten sensitivity is REAL. My gastro said he didn’t really believe it until he saw my case.

    • Well…… if you gave up gluten before your test (a no-no), then of course it would come back negative. You should have your test while you are actively a gluten eater. NOT after you have stopped ! Jus sayin.

  18. Good Afternoon, I am definitely gluten intolerant. I had noticed around 10 years ago certain foods would set my stomach crazy so I had avoided them but didn’t really pay to much attention to it. It kept getting worse and worse and I could not figure out why I was having such gastric upsets! I thought wow is this all in my head many times but my tummy was telling me nope it isn’t. 5 years ago, I had read about gluten intolerance and the symptoms and it was like the light bulb went off, I knew that is what it was. I went to my doctor and she decided that I should cut out all gluten from my diet for a month, then she had me go back on it for a month. I thought my stomach was going to explode after eating the gluten for a month. We did not go for the testing since it is so expensive. I have a few autoimmune diseases and she thought perhaps that might have something to do with it as well. Currently, I have Graves Disease, RA, Ulcerative Colitis. Not sure if that has anything to do with the gluten intolerance but possibly all related. Currently, I do not eat anything with gluten and I am super careful about reading every label, who knew that malt something was gluten! There are many hidden ingredients and if I am unsure I can google the product on my phone. I work out at the gym 5 days a week, cardio and strength training, take a great probiotic and all of these things seem to keep my tummy in check.
    I have discovered some places are really great about taking care not to have cross contamination and if I ask them they will change their gloves when handling my food. There are some places where you can get gluten free foods. There are so many more products in the market now that are also gluten free. I have experimented with making my own GF bread and I can eat hot bread anytime I want. It has been an adjustment and you have to ask a lot of questions when you are out. Yes, folks get annoyed but I can instantly tell if there was cross contamination of my food because my stomach will immediately let me know!

  19. I am sooo glad I did a search and found your article! I have gone repeatedly to the Dr.’s for everything from Asthma, Heartburn, Allergies, Fatigue, Depression and the list goes on and on! When I cut Gluten out all of these symptoms go away! The Dr. told me there is no connection.. which I know for a fact is not true and it seems like the more Gluten I consume the worse the symptoms get! For example Dog Allergies.. I have a Great Dane and a St. Bernard both are indoor dogs and as long as I am Gluten free I am not allergic to them but the minute I start eating Gluten I start sneezing, my nose starts to itch, Hives and my eyes practically swell shut and don’t let me get started on the asthma!!!! It is nice to know that I am not alone:) I thought I was going crazy since the Dr. was adamant that there is no connection.

    • It seems to me Natalie that a lot of General Practitioners don’t really think of gluten intolerance or celiac when they are treating a patient. Their method is mostly to treat symptoms but not find the source of the problem/s. I have read of so many self diagnosed people on this forum like you. I am also self diagnosed and through God’s guidance stumbled across gluten intolerance after trying to find out why my ankle, with a cyst under my tybial cartilage, wasn’t healing. With blood results of low iron and low vitamin D, I suspected I had malabsorption and thought I would give gluten free a trial for 2 months. So many symptoms such as rotten breath, sinus, bloating, mood swings, ulcers in the throat, constipation, terrible dandruff, constant ravenous hunger and bleeding gums started to get better or disappear all together. And after 3 months in a moon boot my ankle started to heal with no need for the operation the specialist suggested I may need. I asked my GP for a bone density test because if I had malabsorption then I thought my bones could be suffering. He humoured me and to his surprise the results came back as borderline osteopenia. My Mother has suffered from depression all her life and only came out of an awful 4 year stint because she thought she would try going gluten free after seeing my improvements. She also does not suffer from constipation anymore either and has lost unhealthy weight. My long point is I do think the family Dr has their good points but they don’t know everything. A lot of mainstream Drs I have come across are arrogant and don’t have the desire to really listen to the patient or find the cause of the problem. I am so glad you have found relief from your allergy and can enjoy life and your dogs more.

    • I’m pleased for you and understand that conventional doctors aren’t open minded enough. I have just started a gluten free vegetarian very low dairy diet and can feel
      improvements already, my husband is doing the same but with a little more gluten but my Chen love bread!! My middle child a boy of 9 yrs has mid spectrum autism and has a limited diet due to sensory issues but we believe we can find a yummy gf bread for him. Both he and his older sister have been tested for cealiac more than once at my persistence and due to many digestion issues. My youngest our foster boy at 2 I believe is dairy sensitive and has trauma issues. Therefore after reading articles and joining this conversation We have decided to run a gluten free house plus continue our healthy diets. Hoping to see differences in health, mood and behaviour.
      Di

  20. Hello, I believe I have either gluten or wheat intolerance. It took many years before I realized this and no doctor diagnosed me. I simply cut gluten out of my diet for a month and severe symptoms began to disappear, stomach problems, swelling feet, etc. Reading this makes me wonder if I have a gluten or wheat allergy. I have a PPO and am curious what type of doctor I should see to have an allergy panel like this run.

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<div class='gf_browser_unknown gform_wrapper qc_box_container_wrapper' id='gform_wrapper_9' ><form method='post' enctype='multipart/form-data' id='gform_9' class='qc_box_container' action='/3-reasons-gluten-intolerance-may-be-more-serious-than-celiac-disease/comment-page-15/'> <div class='gform_body'><ul id='gform_fields_9' class='gform_fields top_label form_sublabel_below description_below'><li id='field_9_1' class='gfield field gfield_contains_required field_sublabel_below field_description_below gfield_visibility_visible' ><label class='gfield_label' for='input_9_1' >Email<span class='gfield_required'>*</span></label><div class='ginput_container ginput_container_email'> <input name='input_1' id='input_9_1' type='email' value='' class='large' placeholder='Your Email' aria-required="true" aria-invalid="false" /> </div></li><li id='field_9_2' class='gfield health-concern field field_sublabel_below field_description_below gfield_visibility_visible' ><label class='gfield_label' for='input_9_2' >I want to improve my...</label><div class='ginput_container ginput_container_select'><select name='input_2' id='input_9_2' class='large gfield_select' aria-invalid="false"><option value='' selected='selected' class='gf_placeholder'>I want to improve my...</option><option value='Weight' >Weight</option><option value='Energy' >Energy</option><option value='Digestion' >Digestion</option><option value='Brain' >Brain</option><option value='Overall Health' >Overall Health</option><option value='All of the Above' >All of the Above</option></select></div></li><li id='field_9_4' class='gfield gform_hidden field_sublabel_below field_description_below gfield_visibility_visible' ><input name='input_4' id='input_9_4' type='hidden' class='gform_hidden' aria-invalid="false" value='9738' /></li><li id='field_9_5' class='gfield gform_hidden field_sublabel_below field_description_below gfield_visibility_visible' ><input name='input_5' id='input_9_5' type='hidden' class='gform_hidden' aria-invalid="false" value='Heartburn/GERD' /></li> </ul></div> <div class='gform_footer top_label'> <input type='submit' id='gform_submit_button_9' class='gform_button button' value='Download eBook' onclick='if(window["gf_submitting_9"]){return false;} if( !jQuery("#gform_9")[0].checkValidity || jQuery("#gform_9")[0].checkValidity()){window["gf_submitting_9"]=true;} ' onkeypress='if( event.keyCode == 13 ){ if(window["gf_submitting_9"]){return false;} if( !jQuery("#gform_9")[0].checkValidity || jQuery("#gform_9")[0].checkValidity()){window["gf_submitting_9"]=true;} jQuery("#gform_9").trigger("submit",[true]); }' /> <input type='hidden' class='gform_hidden' name='is_submit_9' value='1' /> <input type='hidden' class='gform_hidden' name='gform_submit' value='9' /> <input type='hidden' class='gform_hidden' name='gform_unique_id' value='' /> <input type='hidden' class='gform_hidden' name='state_9' value='WyJbXSIsIjVkYTAyNjYxOTg4ZDNhZGQwOTU0Yzc4NDcyNDk5YmM4Il0=' /> <input type='hidden' class='gform_hidden' name='gform_target_page_number_9' id='gform_target_page_number_9' value='0' /> <input type='hidden' class='gform_hidden' name='gform_source_page_number_9' id='gform_source_page_number_9' value='1' /> <input type='hidden' name='gform_field_values' value='popup_name=Heartburn%2FGERD' /> </div> </form> </div><script type='text/javascript'> jQuery(document).bind('gform_post_render', function(event, formId, currentPage){if(formId == 9) {if(typeof Placeholders != 'undefined'){ Placeholders.enable(); }} } );jQuery(document).bind('gform_post_conditional_logic', function(event, formId, fields, isInit){} );</script><script type='text/javascript'> jQuery(document).ready(function(){jQuery(document).trigger('gform_post_render', [9, 1]) } ); </script>
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