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 had the Array test from Cyrex done. Showed high reactions to various glutens you mentioned in your article. Thank you for explaining it. Very informative!
Hey, by elimination test, I have verified that I’m gluten intolerant. No celiac disease though, the test was negative. My allergologist is very open, she told me it is pretty straightforward based on the self-test that I have intolerance and should just stay away from gluten as it makes my symptoms worse. I avoid milk too, though cheese, kefir and yogurt are fine in small amounts. Especially those made from goat milk.
Due to having to follow the FODMAP diet mixed with low-histamine diet, my choices are pretty limited. Noone really makes fun of me and usually the restaurants are also quite flexible too (if you warn them in advance). Peeps accept it but don’t really get it until they see me after one meal that had a secret ingredient I wasn’t supposed to eat: bloated to the point of pain, itching (and scratching it till the skin is full with red marks), skin outbreak (big red spots looking like pimple but they just bleed if you touch them), brain fog…
My new blood results are just in, wish me luck! 🙂 Hoping to eat more veggies and fruits this year!
Thank you for posting this. In September of 2015, I was diagnosed with PCOS. I immediately stopped eating gluten and within 10 days my cholesterol dropped over 50 points. It has continued to drop since then. For 5 years I was in and out of the ER and doctors with the same answer every time – you’re fine. I would have abdominal pain and a low grade fever – felt like it could be a UTI but my tests always came back negative. I went to a urologist, gyno-urologist, internist, infectious disease specialist and finally, my dentist recommended I go to a fertility specialist. He finally figured out it’s PCOS.
Every since going gluten-free, I have felt much better. People say I look better and have a normal color to my skin now. My pain is virtually gone and I still can’t believe it was all caused by gluten.
I do have flare ups where I may have accidentally ingested gluten. Mine do not present with GI issues, but I get really itchy skin, feeling really hot, running a low-grade fever between 99 and 100 and really bad night sweats. Sometimes I even develop a really lovely rash. I am definitely asking my doctor to conduct one of the Array 3 tests on me. Knowing exactly what it is that causes my issues will definitely help me control it better.
Glad to know I’m not alone!
Hi I diagnosed myself, then went to the Doctor and told him i suspected i had Coeliac Disease, the Gastroenterologist said id be very clever if i was right about this, well, i was. This was 23 years ago. After eating GF grains for all this time, i am now unable to tolerate them at all, due to gut dysbiosis, which happened after a parasitic infection. I believe one of my daughters has Coeliac but her tests keep coming back negative. I am interested in this post for this reason. i have never been vilified by anyone, Doctors or friends. I educate myself to keep up with the latest research. But i am worried about my daughter.
Hello Suzanne,
I have read a lot of forums and on gluten sensitivity. One woman said all her tests for Coeliac Disease came back negative. She had extreme debilitating joint pain on the verge of being bed ridden. After eliminating gluten it changed her life for the better as her pain disappeared.
I think there is more going on than just what they test for and an elimination diet sounds wise.
I myself have gone gluten free. All the results from this were: no more constipation ( I suffered with this since earliest memory and had a foot of my bowel removed because of a bad polyp); no more horrid rotten breath ( and I mean like rotting vegetables type rotten); no more bleeding gums when I floss; I have a sense of smell now and I can breath through my nose all the time; I drink water and seem to retain it (hard explain I never seemed to hold water); I am not as hungry ( I used to obsess about my next meal even just after eating ) Amazing! Reintroduced gluten and terrible bloating, horrible mood and feeling generally crap.
Hope you daughter figures out what is going on with her body. Best wishes to you and your daughter.
Hi, I believe if I eat anything too often, my body says nope you cannot eat this anymore, I feel sickly. I have figured out I have to space my food and not repeat the same food and I feel much better.
I have cerebellar ataxia (gluten ataxia) and am trying to find treatment outside of Kaiser, as the docs there think I am fine. Fine to me, would be the quality of life that I had prior to being diagnosed with Ataxia. I am a CrossFit athlete, am used to a very active life, and now am left to struggle to figure out how to make the most out of each day. I have been following Paleo for over 5 years and FODMAP over a year. FODMAP did help some of the digestive issues. It is frustrating that there is not more research on Ataxia. I hope more research will be dedicated to NCGS in hopes to help others such as myself. Other than being strict with food, avoiding cross contamination with gluten and exercising, I don’t know of any other cure. I also have hypothyroidism, which is common with this auto immune issue. If anyone reading this has any helpful information I would appreciate you positing to help me and so many that are suffering from this. Thank you for your time.
Sandi, I highly suspect that you also have a condition called Leaky Gut, or an impermeability of the gut lining. I would highly recommend reading a book, The Autoimmune Solution, by Amy Myers, M.D. You CAN feel better! Also,
check out The Leaky Gut Program from Dr. Josh Axe. I have used both of these resources with success. It takes months to heal the gut, but don’t give up! Good luck!
Hi! Have you heard of RevitalX it is great for healing a leaky gut, when you get into trouble be sure to take the recommended amount morning and evening. I too avoid gluten but get contaminated sometimes.
Chris,
I lived in the Philippines and got Amoeba Hystolica. Both protozoa and larva and treated with heavy antibiotics. I returned to the states and for a year after I had what I called bad stomach days, could not leave the house, extreme bloating, gas, pain, above my belly button. I would actually get sore to the touch. Gastro docs want to give you meds and call it irritable bowel syndrome. A year after the amoeba at age 50, my appendix ruptured, not common at this age. During my healing time I started researching gluten sensitivity because how do you all of a sudden get irritable bowel syndrome. Once I removed gluten my life changed. On the return visit to gastro doc for follow-up colonoscopy he commented that I had lost a lot of weight, 25 lbs. asked me how, I said I removed gluten from my diet and the weightloss was secondary to the elimination of all my stomach issues. Today, even eating beans no longer causes me a gut issue. But I do eat gluten every once in awhile and within hours my stomach issues surface, up all night with stomach pain and sore to the touch the next day. I will remain gluten free to be pain free.
I had DH for 40 years (age 4-44). I was told it was psoriasis or dermatitis depending on the Dr. and the severity of it at the times of my appointments. My husband would put steroid cream on the back of my neck because I would forget to. Once I went to a rapid care, tearful, because I had an eye infection, ear infection, yeast infection and oozing, scaly, itching skin rash. The dr said, “Why do you have so many infections?” I think he thought I had HIV. He said my skin problem was from too much showering but I knew that was not true.
When my daughter came down with my skin trouble I thought she had chicken pox. At the Dr office I was told it was a staff infection. Later we were told dermatitis and the eczema. I googled skin disorders and learned about DH. The photos looked familiar! I had my girl tested for CD and it came back (weak) positive! The numbers on the panel were just a little over the normal range. We stopped gluten and she is 100% percent better and I am 80% better. I am now suspecting that I need to stop dairy if I want to try for 100%
I have had hives since October 2015. Nothing was working.I was seen by a nurse practionner who prescribed prednisone and Keflex. I found I was allergic to Keflex when I broke out more. She switched me to Tetracycline and Prednisone. Still no results, she sent me to a dermatologist who had me take Allegra 180 mg twice a day, Cimitidine 400 mg twice a day, Benadryl at night and ice packs. In January 2016 I had it. Nothing was working.So I went to an Acupuncturist. He is from China but a graduate in clinical pharmacology from Northwestern. He said ” Try not eating any thing with gluten.” I went for 4 days with no hives. I made some homemade chicken and rice soup for my wife. I decided to have bowl. No problems. The next day, I had a bowl for dinner with saltine crackers. I woke up in the night with hives here and there. The next day I was back at the Acupuncturist . I told him what happened. Again he said , Don’t eat things with gluten. My brother is a retired doctor. I told him of this and he said gluten is only for people with GI problems. After researching around other sites, I am convinced it is a developed condition. My favorite snack is a peanut butter and jelly sandwich. I had these almost everyday from the onset of the hives (which were caused by an insect bite). It might be an acquired situation. I am going to stay gluten free for at least a month of no more hives and see if it corrects itself. I just am wondering why there is a sudden rise in cases and how before these Hives, I was not gluten intolerant. OH.. I am 68
My friend had the gluten Cyrex test as she felt gluten was not good for her. She feels worse on gluten (joints, skin) and also has hormonal health issues. She was very suprised when the results came back negative despite eating gluten for months before the test. Can the test be wrong or is it possible someone is still unable to tolerate gluten despite normal results from Cyrex. She was left feeling very confused.
Hi Claire,
Your friend should have a total IgA and total IgG lab test run on her blood. If she is IgA or IgG deficient then the Cyrex test will appear negative because her immune system can not mount an antibody response.
Nadine Grzeskowiak, RN BSN CEN
Gluten Free RN
Hi chriss
I have permannent issue of lungs inflammation. Although gluten allergy is not know, can it be related to gluten allregy. I eat wheat a lot of wheat daily. Please comment
The science shows that gluten causes the enterocytes (the cells that line the gut) to excrete zonulin, a substance that causes the enterocytes to loosen and allow the contents of the gut to get into the blood. This includes uncleaved amino acids in the form of protein chains like gluten and casein, as well as pieces bacterial cell walls. These lipopolysaccharides cause inflammation anywhere in the body that has had previous damage. Continuing to eat gluten results in tissue damage.
I have had issues with my lungs. I have ncgs. Self diagnosed by multiple gluten challenges. I can eat a little wheat here and there but if I keep eating little portions day after day symptoms will start to show up. Subtle headache,joint pain, tingling in hands and feet and would start to feel bloated and feel like I was breathing through a cotton ball. All symptoms would disappear after a few days of no consumption of gluten. Fyi. I was also tested for cd and the tests came back negative.
Hi, Chris! I really want to thank you for this article. I have never been formally diagnosed with gluten intolerance, but all I know is I had serious stomach issues for one and a half years, and only felt totally better when I quit gluten (and cut down on quite a bit of dairy and added sugar). I was frustrated before because my doctor didn’t take my stomach pain seriously (he never takes any of my pains seriously– and once I had TWO KIDNEY STONES! And he insisted it was “only menstrual cramps” before the CAT.) Once I finally convinced him to run a CD test, it came back negative.
Then, once I decided to be gluten-free just to try it, many friends and family judged me, telling me that it was “junk science.” And I also got a lot of “haters” in the CD community because I wasn’t formally diagnosed with CD and still thought gluten was the problem. I wasn’t trying to down-play their pain; I know it’s probably worse than mine! But it didn’t mean that my pain wasn’t still real.
It’s so nice to hear from a professional that I probably didn’t just make up this pain in my head. Thank you for sharing and creating awareness!
I have been facing IBS since last 3 years. Some of the worse symptoms I faced were weight loss, severe hair fall, rapid greying of hair (now almost 60%) and hypothyroidism
I was detected with CD almost 4 months back and have been on gluten free diet since then. I felt a big relief in the starting with things gradually falling into place. But the symptoms have again come back despite the fact that I am still on Gluten Free diet.
In India CD is still something people are unaware of and it actually makes life miserable.
Is anyone facing the same problem as mine? (still having the symptoms despite being on Gluten Free diet).
Please suggest.
Dr. Kenneth Fine who’s lab tested me 10 years ago told me that the majority of people who are gluten-intolerant are also dairy-intolerant. Until I also stopped eating cow’s milk, many of the symptoms lingered. This has to do with the size of the protein molecule and not lactose. Goat and sheep milks are okay in small doses.
Were you diagnosed with Celiac?
Also you could have SIBO, since that affects those with and without Celiac disease and causes malabsorption of nutrients but in a different way.
I agree with the other two posters re the dairy intolerance and SIBO. The other point to consider is possible ‘leaky gut’ issues and the importance of healing that.
I just found out I have a problem with gluten my life has been a living hell with joint pain and inflammation even my tailbone was affected along with horrible digestive problem I’ve been gluten free for to day and my joint pain is almost gone and yes I do have a problem with dairy product and coffee I think coffee is a problem because of mold inseam to haven’t problem with foods the have mold and have eliminated them as well ….i hope in time my digestive system will improve as well I did this on my own I have up on trying to get help from any doctors who seem to be clueless unfortunately
I have developed idopathic peripheral neuropathy. My deamidated gliadin peptide IGG came back a high positive but my genetic test came back negative for celiac. Is it possible that my neuropathy is still related to non-celiac gluten sensitivity?
Lisa, I was diagnosed with idiopathic small fiber neuropathy in 2011. I was 65 y/o. All my neuro tests and A1C (I don’t have diabetes) were normal. I was started on Neurontin to help control the burning pain in my feet. In 2013 I read that gluten could cause neuropathy and decide to stop grain. In three days, I had less burning and weened off Neurontin. I started following Chris Kresser and Sarah Ballentyne (Paleo Mom). I changed to a Paleo lifestyle, no processed food 99.9 percent of the time, did Sarah’s autoimmune elimination diet, detoxed all my household cleaners, started taking digestive enzymes and probiotics, and recently detoxed my personal care and cosmetic products. Each change I made improved my symptoms. I did not have any other testing. I just went for the lifestyle changes to improve my health and wellness. This month I am finally pain free and can sleep in bed with the blankets tucked in. I’m replying to you to give you encouragement. I hope you find what works for you to relieve you of your symptoms.
65 and also recently diagnosed w idiopathic pn. I call baloney on this this idiopathic thing. LOVE hearing stories about healthy living and the reversal of pn. Off I go!! Thanks for sharing and providing hope!
I was diagnosed with IBS many years ago. Before that, I knew I was both lactose and whey intolerant. I had testing done for celiac over a period of several years and it all came back positive, except the blood test. The GI doctor said that was the most confusing thing ever! Well, really! So they told me it was up to me if I wanted to avoid gluten or not. Well, a few years went by and due to several other sever health issues I completely forgot about the gluten problem. Thus past year I noticed I kept feeling nauseous and pinpointed it was due to eating gluten heavy meals. Since then I’ve cut out gluten completely and feel so much better for it. I stumbled upon this article because I ate some poor food choices this past week that don’t work well with the IBS, lactose intolerance, whey intolerance, or gluten intolerance and was feeling horrible!
With having IBS I’ve learned a few things I just can’t eat over the years, most co-inside with being gluten free. I stick with low fat proteins and non complex wheat free carbs are the basis of my diet. I steer clear of seeds, fruits with seeds, raw veggies, green veggies (which is what everyone tell people to eat a lot of, but they can really do a number on people with IBS), sugar, fatty foods, fatty cuts of meat. I usually eat my veggies at the end of my meals like they do in Europe that way there’s other food in the digestive system and it’s easier for it to handle (salads are ok, but it’s the stuff like broccoli, kale, etc.).
A side from gluten, lactose, and whey, I also have a low tolerance to eggs. I have already been diagnosed with Fibromyalgia so I know once you have one autoimmunity deficiency you are more likely to develop another one.
Hi I am a 51 year old female. My doctor suggested trying a gluten, wheat, dairy free diet 3 weeks ago, after almost 40 years of digestive upsets mostly intense severe bloating, knee buckling pain and chronic spontaneous diarrhea. I remember as a 10 year old in school sitting for hours on the toilet after eating school dinners, I felt tired and ill as a child and worse as a teenager going out eating fast foods, I tested negative for Coeliacs, I wished I had tried this diet earlier or that my previous doctors had advised me better, I feel great I have more energy my eyes are sparkling people have noticed I look better my skin is rosy again and the best thing is no more extreme bloating in fact I am now 2 dress sizes smaller in just 3 weeks, I am not hungry I am just happy that it seems to be working, for the first time in decades I feel well, perhaps going out for a meal will be problamatic, but to be honest I don’t intend to eat out at all if I can help it, I simply cannot go back to the worsening digestive issues I had for years and years I was so unhappy and poorly, I walked my dog for 3 miles yesterday I have not done that in decades with any of my previous dogs as I had zero energy I was always asleep throughout the day, all I can say is I feel I have been reborn and given a second chance at life.
I avoided gluten for years because eating it made me feel like I was in a coma (extreme fatigue and everything seemed to be in slow motion). My family thought it was a ‘control issue’ and generally made me feel like the problem was in my head, not my gut. Well, my first child pooped blood 12 times a day for three months until we eliminated both dairy and gluten. When I weaned him and went back to eating them, I felt awful. Same story with second child. Now I avoid cow’s milk and gluten assiduously and, when rudely questioned, I calmly state that I don’t care to produce another child who poops blood 12 times a day. That usually silences the skeptics.
It makes life hard when the people you love don’t believe what you’re going through and think you’ve lost it. I’ve always said I can’t blame family and friends for not understanding but I can for not believing. I stay clear of these. Be well and kudos on your decision.
Is it possible for someone who has a negative biopsy test positive on the Cyrex 3 Array?
Hi Chris
I am a State Registered UK dietitian and self-diagnsed my own NCGS in 2010 after 25 years of very poor and deteriorating health. Biopsy was negative. All my symptoms (mainly – severe migraines, brain fog, lethargy and tiredness and latterly ataxia) vanished once I had my diet correct. It took me about 1 1/2 years of trials with elimination diets to finally conclude my problems were as follows:
1. Gluten from wheat, rye, barley and oats
2. Corn gluten
3. Rice gluten
4. Cows milk protein (OK with butter and double cream)
5. Coffee
6. Allergies to brewers yeast, bakers yeast
7. Allergies to pineapple (severe) and melon
My doctors have now finally agreed with me that my problem was gluten, after intitially trying to suggest it was all ‘in my head’! I have my life back and now am 100% fit and well with zero symptoms and (halleuja!) no migraines.
Now I diangose others and am having miraculous results when people go truely gluten free! THANK YOU!
p.s. When I eat gluten by mistake: I feel nauseous and lethargic for days. My hair starts to fall out at the front of my head and I am left with a small bald patch the size of a golf ball. (It grows back eventually but thins each time). My ataxia returns – I drop things, fall over my own feet and generally have trouble co-ordinating. Sometime I even start to slur my speach like a drunk!
Hi SA,
I seem to have the same problems as you. After ingesting gluten I have severe brain fog and migraines as my main symptoms. No GI symptoms noticeable. I have your #1,2 and 5 and slightly 3.
I recently tried going paleo and felt a lot better at first… Head was clear and more energy… However as time passed I started getting chest pains and felt high adrenaline because maybe I was starving or very low carb, but I was eating nice sizes of potatoes…
So I remember eating rice chex and I don’t remember that bothering me, like I feel like I need a carb with added vitamins because I was feeling deficient. How do you go not eating barely any carbs without starving??
I actually tried GF cheerios today and got neuro problems as well as mouth ulcers… So I will try to go back to GF rice chex and hopefully it won’t bother me.
I really want to know how you can’t eat any of those foods without feeling like u r deficient or starving?
Thanks
Paul, what is your meal like that you describe as “Paleo”? Your comment focuses on just the starches. Are you eating any other kind of vegetable? Above ground veggies, especially greens are Paleo, and are more nutrient rich than anything else you can eat. If you are feeling deficient after eating isn’t it likely you are feeling a deficiency of micronutrients, like vitamins, minerals, phytonutrients, and enzymes? Hunger is often driven more by sensitivity to shortages of micronutrients than it is by shortage of calories.
I would suggest eating a varied diet that includes a broad range of vegetables. You don’t have to exclude starches, just use things like squash and sweet potatoes mixed in with veggies that are lower in calories, but high in fiber. You might be surprised how well you can get along without grains. And you might be surprised how healthy you feel. Just a suggestion to think a little differently about a Paleo diet.
Merry Christmas!
It takes some planning and effort. I eat alot more proteins and tons more vegetables in place of the gluten-foods. I don’t eat bread, I already avoid potatoes bc of prediabetes, and I have substituted quinoa for rice in most cases. I can’t speak for SA in particular, as they have quite a few more sensitivities listed than just wheat gluten. It was helpful to find a website with gluten-free recipes and I know there are nutritionists who are experts at helping you nail down a good diet and still be gluten free.
Also, if you are sensitive to corn, that’s a whole barrel of worms. Corn syrup and corn byproducts are in SO MANY packaged foods, including white vinegar, ketchup, and I’d bet maybe in those GF cheerios. I have been suspecting corn sensitivity and did some research about it a while back, this was a very useful site to look through https://www.cornallergens.com/
Hi Paul
I find the variety no problem. My main carb sources are coconut pankes, coconut paleo bread and occasionally tapioca cheese bread (made with goats cheese). I eat lots of nuts, seeds, veg and salads. Regular fish and meat. I do find I need to take regular Epsom salt baths to keep my magnesium levels up and I take supplements of D3, omega 3 and B12 (methylcobalamin). This appears to suit me and I’m now in perfect health.
Hi Paul
I’m not starving at all. My diet is very much a paleo style one. Fortuanately I can eat nuts, eggs and coconut. So I use plenty of those. For treats I make myself tapioca cheese bread (goats cheese), coconut pancakes and paleo style cakes/bread. I do avoid recipes with a lot of natural sugar in though, such as agarve syrup, coconut sugar, maple syrup. Just because foods are natural does not necessarily make them healthy in large quantities. I take supplements of magnesium (Epsom salt baths and magnesium glycinate, vitamin D3, omega 3 and B complex).
Happy New Year SA
My wife is having severe issues, we figured it was a gluten issue and she seemed to be better when she went off of gluten but now it seems rice, corn and fructose are an issue now also. She did develop a lactose issue and has had a sulfite issues for a decade. We want to go see a Dr. but not sure type to see?
Do you have any advice? she did see a gastrologist and they thought it was in her head.
I feel for you both. I’m in the UK and basically had to figure it out for myself. Even as a qualified State Registered Dietitian I found it pretty challanging. It was a year and a half of trial and error and I still make the occasional adjustments now. The most important thing is to keep the variety in your diet otherwise you will end up with nutritional deficiencies. I developed magnesium deficiency at one point! (My GP (bless him) was convinced that I had ‘rapidly progressing MS’!!). I soon realised though and now take magnesium regularly – end of problem.
Ideally you need to see a doctor or dietitian with plenty of experience of gluten free diets, so not someone newly qualified. Look towards paleo style eating.
Can I sugest for those who live in the UK? If you have a gluten problem you need to try to find someone for whom this is a specialist area. Try serching for “state registered dietitian” and “gluten specialist”. If there is not someone in your area they may do Skype consultations if you are prepared to pay up front. They will, of course, need access to your medical details. In my own practice I allow 2 hours for an initial consultation as this is how long it takes to gather all the necessary info. You need to be patient to get result and there is a learning curve.
I have “gluten intolerance”, but I was not diagnosed with celiacs. I thought maybe it was in my head, so I tried eating gluten again after being gluten-free for a while. I didn’t feel as good as I did without, so I just decided it was better not to eat it. I have high levels of stress, and I feel like that makes everything in your gut more volatile. It’d be nice know whether or not I have something other than just gluten intolerance though!