The People's Perspective on Medicine

Is Non-Celiac Gluten Sensitivity a Figment of the Imagination?

We have observed health professionals laughing at the idea of "leaky gut." New research suggests this condition exists, in part from gluten sensitivity

Decades ago, American doctors believed they would never see a case of celiac disease because it was considered too rare. Over the years, though, research showed that celiac disease is not rare. Now, there are many Americans following a gluten-free diet even though they do not have celiac disease. They say they simply feel better when they avoid gluten. Many physicians are skeptical about this condition, termed non-celiac gluten sensitivity. We have heard them describe these patients as nut jobs. They consider this a fad that will fade with time. Is non-celiac gluten sensitivity all in people’s heads?

What Is Gluten and When Is It a Problem?

About 1 person in 100 with European ancestry has celiac disease and cannot tolerate gluten. This protein is found in wheat, barley and rye. When a person with celiac disease consumes food containing gluten, the immune system goes a bit haywire and attacks the lining of the small intestine. The tiny cellular “bumps” that are part of the lining called villi are destroyed, and the ability of the intestine to absorb nutrients becomes seriously impaired.

The consequences of celiac disease can be severe: osteoporosis, anemia, joint pain, headache, fatigue and itchy dermatitis in addition to digestive distress including diarrhea or constipation, nausea and vomiting, flatulence or heartburn. People with celiac disease are also more susceptible to cancers such as lymphomas. Following a strict gluten-free diet can make a huge difference for such people. Doctors no longer think this is a rare condition. Learn more about the complications of celiac disease and find out: Are You Suffering from Celiac Disease?” at this link.

Should People Without Celiac Disease Also Avoid Gluten?

In the past few years, as word has gotten out about celiac disease and gluten-free foods have become more readily available, many people have decided to avoid gluten themselves even though they do not have a diagnosis of celiac disease. For some of these individuals, it just seems like a good idea. Others, however, report that they have definite symptoms that disappear if they don’t eat foods containing gluten.

Gastroenterologists worry that people self-selecting a gluten-free diet that is unnecessary may be compromising their nutrition by limiting their fiber intake. Some doctors think this is the “disease du jour” and should be dismissed as nothing but a fad.

Non-Celiac Gluten Sensitivity Gets Attention:

A new study from Columbia University Medical Center (New York City) and the University of Bologna (Bologna, Italy) shows that some of these individuals are objectively reacting to gluten even though they really don’t have celiac disease. The researchers recruited 80 people with non-celiac gluten sensitivity, 40 people with celiac disease and 40 healthy individuals.

Those with celiac disease had intestinal damage, but markers of immune system activity were not elevated in their blood. The people with non-celiac gluten sensitivity, on the other hand, had high levels of CD14, a compound signaling systemic immune system activation. They also had higher levels of lipopolysaccharide-binding protein and antibody reactivity to microbe antigens. The researchers believe that this is due to microbes or bacterial toxins slipping through the intestinal wall into the circulation.

Leaky Gut?

Presumably this is triggered by damage to the intestine triggered by gluten. It weakens the intestinal barrier and leads to intestinal permeability. A simple (and less elegant) way of describing this is to say “leaky gut.” Elevated levels of fatty acid-binding protein 2 found in some of these non-celiac disease patients also indicate increased intestinal wall permeability.

What Should People Do?

This research demonstrates that doctors should not automatically dismiss people who report problems with gluten even though they do not have celiac disease. If the physicians are truly skeptical of their patients, there are now objective markers that can be measured. The researchers who discovered this inflammatory immune response are among the best celiac scientists in the world.

There is also a straightforward treatment: people with non-celiac gluten sensitivity can greatly improve their symptoms and reduce their markers of inflammation and intestinal damage by following a gluten-free diet, according to the study. Twenty of these individuals were asked to follow a diet free of wheat, rye and barley for six months, and after six months the markers had dropped significantly. Oddly, there was not a significant link between symptom improvement and change in biological markers.

Because it may be tricky to follow a nutritionally balanced diet without any gluten, we suggest that a person starting on such a project may want to schedule a session with a dietitian for guidance. Share your own experience with gluten in the comment section below and please vote on this article at the top of the page.

Gut, online July 25, 2016 

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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I am not sure that gluten intolerance is the real problem or the use of glyphosate and other chemicals on wheat. Some believe the problem is the latter. Others do not. I would like to see some studies on how much of our wheat supply is contaminated with herbicides and pesticides and the effect on the human body.

My husband is a type 1 diabetic & has been for 50 yrs. He has dealt with severe constipation for a number of years so we tried a gf diet. The problem immediately went away. We have always eaten a diet heavy in fruits & vegetables so we feel like we get a balanced diet.
For my part, it is easier to cook gf for two people. I found that I have more energy & less bloating while avoiding gluten. I can’t see how trying a gf could be harmful & it could possibly help many issues.

In my 50’s, I was diagnosed with a wheat allergy and refrained from wheat. This made quite a difference in my gastrointestinal system. However, I still became very tired and had heartburn when I ate 100% rye crackers of which I was quite fond. Fast forward 15 years: I began to experience frequent diarrhea and tiredness again. Did not want to go on some of the rather extreme medications a gastroenterologist recommended because I have osteoporosis. So I followed the recommendation of another doctor to try cutting out gluten since I was still eating rye and barley. After about a month, all diarrhea and tiredness symptoms disappeared and have not reappeared in the subsequent six years. Thus, I continue on a gluten-free diet, including avoiding beer.

I have celiac, diagnosed with an endoscopy. I asked for it because I had horrific heartburn and was concerned about scarring. So, I went thru the cupboard and discovered everything had wheat. All the soups. I switched to organic which were wheat free and began cooking more soup from scratch. Much better than buying it prepared and seasoned to someone else’s taste. Fiber can come from veggies and some fruits; much better for you than bread and today’s sugar laden cereals. More cooking. I cautiously weaned myself off protonix, what I thought was my miracle medicine. Don’t we know better now? Very occasional heartburn and mostly if I cheat. I can usually avoid temptation because the price is too great. Yes, I miss pasta; however, I make sauce, including some veggies like mushrooms, cook some corn pasta, add shirataki noodles and there is the taste I love. The chronic constipation is gone now too – but that may be more due to the essiac tea than being gluten-free. Prepared foods, even mostly healthy ones, without a whole list of chemicals, can be difficult because soy sauce, containing wheat, is frequently used as a seasoning. If it is very far down on the list and the meal is a good one in addition to the prepared portion, I chance it and usually there is no problem. I have always had gas, am now taking metformin, so there is a reason for the toot – toot, other than celiac. I live with it; the metformin is good in ways other than treating diabetes. I was also shocked to learn there is no follow-up when you have celiac because, according to the gastroenterologist, everyone cheats, so why bother? Some incentive!

I was having problems with IBS like symptoms, bloating, and weight gain, also some joint pain in various places. Going without gluten when I was by chance on a diet that prohibited wheat products made me feel much better. However, since then I have also discovered I am also lactose intolerant, which seems to have been the source of most (but not quite all) of my IBS-like symptoms. I have had a full Celiac panel test and do not have Celiac Disease. Even so, when I 10 avoid dairy or take the enzyme lactase when I eat dairy, and when I avoid wheat products, I feel lighter, have more energy, lose weight more easily, have much less joint pain. Daily intake of Kombucha tea at least 20 minutes prior to breakfast also reduces my joint pain significantly. I am suspecting still I have leaky gut syndrome to mild degree. I think the active probiotics in Kombucha tea possibly help heal the gut and make it more functional, plus a product of the fermentation that makes this probiotic tea is supposed to help the liver remove the offending protiens from the blood after they have leaked of the gut. I am nearly 65 and he is 69 years old. All I know is, the fermented Asian tea Kombucha helps both me and my older brother to be more more mobile, sleep better, be healthier. Terry

If gluten sensitivity is in my head, then my digestive tract must be loco also.
I eat wheat, very soon coming out the other end.

I have ITP (idiopathic thrombocytopenia). It is an autoimmune disease in which my body attacks my platelets. My platelet numbers were low for 4 years (90k, and the bottom level for normal is 150k) but not at a level that required treatment (at 50k and below they start on prednisone and then the treatments get worse from there) My hemotologist told me there was nothing I could do to effect my platelets. I went in for blood tests quarterly. Then my platelets began to drop. I got as low as 67K. A neighbor suggested I try going gluten free. I figured I had nothing to lose but I was quite skeptical that gluten would effect my blood. HOWEVER, after 3 months my numbers jumped back to 90k and I am happy to say after 2 years of a gluten free lifestyle, adding probiotics (both supplements and food) and a steady practice of yoga, my platelets are at 269k!!! I am not celiac, but I am definitely reactive. My Drs refuse to admit or suggest to others that gluten free might help. They simply tell me “keep doing what you are doing”

I went to a doctor in 1990 who cured me of not only a precancerous condition for which two other physicians had determined I needed surgery (a hysterectomy) but also of arthritis by changing what I ate. His diet was low fat vegan. Six months into his diet I discovered that I suffered total exhaustion within an hour of eating many times, had chronic postnasal drip, and chronic low-level depression.

I went back to the same doctor, who said he could prescribe Prozac or put me back on hormones. I left his office thinking, “It has to be something I’m eating that is causing these problems.” I kept a food diary for a few days and recognized that wheat was the common thread for the exhaustion. Three days after eliminating it from my diet I felt as if a huge black cloud that had been hovering over me for years lifted and disbursed! I recognized then that I had been suffering from low level depression my entire adult life!

I have been gluten-free ever since. At age 69 I suffer no deficiencies, take no prescriptions, and have none of the old symptoms unless I inadvertently ingest some gluten. I know I have because my nose always itches when I have! Several years ago a friend introduced me to a product by Enzymedica called Gluten Ease, and my symptoms disappear if I take one capsule!

It has been my understanding that having been gluten-free for over 25 years that I can’t be tested for celiac disease. It sounds like that might be possible now, but I’m not interested in the consequences, and being gluten-free, though inconvenient, works for me.

I do not have celiacs. I’ve had all the tests for it, including the genetic testing. But I did test positive for wheat sensitivity in a blood test, which tests sensitivity to a bunch of foods. When I eat wheat, I develop such horrific abdominal pain that I have ended up in the emergency room several times. I may be a “nut case,” but here’s what I know: no wheat, no ER. I’m willing to make that sacrifice!

I do not have celiac disease, but I do have severe rheumatoid arthritis. I started a diet to lose weight that happened to exclude gluten and processed sugar. My arthritis symptoms improved so much that I was able to discontinue taking my dangerous biological agent. I have not continued on that specific diet, but I have continued to stay gluten free and to significantly reduce my intake of processed sugar. My blood work indicating inflammation has gone from elevated to normal or at times slightly elevated. I plan to stay gluten free.

I’ve had IBS-like reactions to ADDED wheat gluten since I was a teenager. (I’m now 63.) I have to read food labels all the time, and I noticed that in the intervening years, wheat gluten is being added to more and more food products. It’s almost impossible to find commercially-made bread without it. I’m okay with wheat flour and other wheat products but not naked wheat gluten. Now, I limit my intake of wheat altogether and feel much better. Please note: I had the celiac disease blood test and it was negative. The GI specialist said, “It must be something else.”

Have you heard of the fod map diet for people with celiac disease?

I second many of the comments made above. I have read that today’s wheat is very different from the wheat of centuries ago. I myself have been following the blood-type diet for over 10 years, which had me eliminate wheat, but not gluten.

After a year or so on the diet for Type O, the joints in my fingers were no longer swollen, and suddenly I could wear a ring I had put aside.

I suffered with severe diarrhea for over twenty years. My doctor said it was IBS. I took Immodium daily. I tried eliminating dairy with no improvement. Then along came all the news about gluten.

Within a couple of days of eliminating all bread products, the diarrhea stopped completely. If I eat bread now, I will have diarrhea the next day without fail. Easy solution for a problem the doctors could not help. Yes, there is such a thing as gluten sensitivity!

My daughter, who is in her 40’s, has had debilitating migraines since puberty. They were so bad a year ago (2-3 a week) that her doctor recommended trying a gluten free diet. Her migraines completely disappeared, as well as skin and intestinal problems, that had also developed over the years. She has accidentally eaten gluten on two occasions and it immediately triggered a migraine. Other that that, she’s been migraine free for over a year and is a much happier person.

Vegetables, fruit, nuts and seeds are full of fiber. One does not have to consume wheat products to get fiber. Avoiding wheat can actually improve health. Remember, our ancient ancestors did not consume any processed foods.

I recommend the GAPS or SCD diet for those going gluten free. The gluten free foods in the store are made with crappy ingredients like tapioca starch, rice starch, potato starch, LOTS of sugar…you are just trading one set of problems for another if you purchase these.

GAPS and SCD use almond flour for making baked goods, breads, etc. It’s expensive, but you can buy in bulk from the internet and freeze. Recipes are in the GAPS and SCD books, and all over the net.
It has helped us tremendously, good luck!

Our story: My son is gluten-sensitive, diagnosed via gene testing, (the celiac blood profile was inconclusive). He’s been gluten free for 2 years (we follow GAPS diet) and is doing much better:
Hasn’t had an asthma attack since, excema is dramatically reduced, dog and cat allergies are better-can go to a friend’s house with animals and not come home wheezing. Most of all though, he was short of stature (the rest of us are tall), and has grown 5 inches…

I also follow GAPS and my IBS is gone, my thyroid antibody titers (I have Hashimoto’s), are very low, as are other markers for inflammation-hsCRP, fasting insulin, ESR.

I suffered with severe nasal allergies for years. Testing showed allergic responses to dust and mold, but doctors said the levels did not match the level of reaction my body showed. One winter, after getting 3 colds, I developed asthma so bad that I couldn’t exercise or sleep. Doctors dismissed it as “adult-onset asthma” and prescribed several drugs. Out of desperation, I did a web search and found a blog from someone who suffered similarly until he gave up gluten and sugar.

With nothing to lose, I tried it. After about 3 months, I realized I didn’t need my inhaler anymore. I no longer woke up having to blow my nose for 15 minutes, as had been normal for me for years. The following fall I realized I hadn’t needed any allergy medication for seasonal allergies. In my head? Possibly, but I’m not going back to gluten, ever. I enjoy breathing too much!

My middle daughter was born 11 months after her older sister. She has had stomach and intestinal issues all her life. Not until she was in her mid thirties did she discover her gluten intolerance via a stool test. When she eats anything containing wheat flour, she has miserable digestion problems for a couple of days. My older daughter was lactose intolerant (so she thought) during her pregnancies. After her second son was born, she tested and found both of her sons (as well as herself) were gluten intolerant.

I have been troubled by digestive and intestional issues most of my life, but until I went gluten-free, I spent a fortune on gas remedies and stomach relief. Now, I only have occasional issues, especially after dining out, and a pro-biotic settles things down usually. My other two children (a son and another daughter) have issues at times, although they do not follow a gluten free diet totally. Do I believe gluten is an issue in my family? You bet I do!

I had the same experience as the writer who did fine eating bread in Germany. In 1996, I started having severe digestive symptoms. After trying several interventions that didn’t work, my doctor put me on an elimination diet. Gluten turned out to be the culprit. So I cut it from my diet and my symptoms disappeared. A few years ago, I went to Italy and decided to cheat a little. When nothing happened, I started eating more bread and pasta. I had no symptoms so I decided maybe I didn’t have a problem with gluten, after all. When I came home, I went out to dinner and had pasta. I was sick for three days. I, too, believe the way wheat is grown here is probably the problem. Interestingly, the beginning of my problem correlates with the years that glysophate started to be widely used.

I’ve been battling candida for 30 years and finally gave up gluten 18 months ago. I’ve been tested for gluten and am negative for celiac.
My symptoms have improved since avoiding gluten but I still have some candida issues. I believe leaky gut is very real.

Forgot to say, further down is mentioned about GMO in food. I also have a starch sensitivity and thought I can’t eat potatoes, but if they are organic, chopped, and given a good rinse to reduce the starch, it’s fine. On a good day, my IBS tolerates white cabbage, too, again when it’s organic. I believe GMOs and spraying the fields have damaged foods. Myself and others think, in time, more people will have the same problems.

Thank you for this article. I have been limiting my gluten to rare occasions and for the most part remaining gluten free for the past 5 years. It has worked for me and I have been told by medical doctors I am imagining it. I know for myself there is something there, and I am content to say I know my body better than a doctor does.

They can’t test for celiac for me as I have to eat it for six weeks, day one makes me bad, day two is awful, stomach pain, acid severe, IBS terrible and even if I stop, it takes a good week to settle, sometimes ten to twelve days . My problem is that I also have a hiatus hernia and find I can’t eat fat at all, hence the only meat I eat is chicken. Buying bread is impossible. Normal bread has the wheat, free bread has a higher fat content and tastes almost starchy, it causes stomach pain becoming inflamed, the acid becomes chronic and my throat and esophagus becomes inflamed too, makes me cough and can hardly get anything to go down. Even water makes the tube down go in painful spasms. It needs looking into, ways to help manage it and also low fat as well as wheat free .

Because I had read that going gluten free was advisable for those with hashimoto’s, I decided to do it. It really wasn’t hard at all. The hardest part was answering all the questions from inquiring minds. After a year, my digestive issues from not having a gall bladder continued. I was hungry all the time, and I thought I would eat some bread. For the first three days it was great ~ I felt full, my bowels were happier ~ yay! After that, I noticed terrible bloating, and then the lymph nodes in my neck went haywire ~ it was awful! It has taken over three weeks, but things have calmed down again. I will never touch gluten again! I can’t use any of the substitutes for gluten as I don’t do well digesting starches, but I’ll get over it, because I never want to go through that again.

I noticed personally that having a lifetime of digestive health problems (and now recently with itching problems aka dermatography) that choosing gluten-free, when given a choice, has helped tremendously. Trying to go on a gluten-free diet, however, can be costly and quite time consuming for just myself. My digestive health problems have become tolerable over my life span through years of trial and error, but itching is a whole new ballpark!

The University of Massachusetts is studying a diet that is gluten free and has other restrictions in the treatment of IBD,Crohns, etc. My son, who had severe Crohns has been on the SCD diet — also gluten free — developedby Elaine Gottschalk– for 2 years and has no signs, other than scarring, of Crohns. I’m no scientist, but I believe the science behind these diets is that bad bacteria in the gut feed on gluten and sugar and the lining of the intestines, causing leaky gut. Eliminating sugar, gluten, adding prebiotics and probiotics, starves the bad bacteria and helps to repopulate the gut with good microbes.

My son’s gastrointestinal doctors have shown very little interest in the diet, but told him to “keep on doing whateverit is you are doing.”

http://www.umassmed.edu/nutrition/ibd/

My daughter has been strictly gluten free for 10 years. Not only did all of her symptoms disappear, she looks totally different. Her face and body was puffy and inflamed but we didn’t realize it. The only thing I disagree with is your comment that it can be hard to have a balanced diet without gluten. Her diet is so much more balanced than anyone in our family because of the stuff she doesn’t eat. She eats more vegetables and less bread, sweets,
etc. By the way, she tested negative for Celiac but if she eats gluten now it makes her sick.

I think the problem with wheat, etc in this country is not gluten, but the Roundup ready GMOs wheat. My sister had extreme digestive problems, went in a “gluten-free” diet and improved dramatically.
She was on an extended trip to Germany and started with a tiny bite of bread, soon eating the wonderful non-GMO bread lavishly with no bad effects.

One thing missing from this article about gluten is the billion dollar food industry opportunism that has taken place. For an issue that researchers have to strain to make any kind of case against – just over 1% of population may be sensitive to gluten – food delivery trucks unload tons of product to supermarkets daily to fix a problem that barely needs attention,let alone “fixing”. These products are clearly labeled as a gluten relief / cure in a box.
Had these same dollars been spent on desperately needed research in numerous other illnesses & diseases they would have been much better spent dollars.

The wheat we all consume today is nothing like what our parents and grandparents consumed in the 1950’s and before. One has to wonder with all the wheat modifications that have been made are we consuming a product that is now poison to us?

Well, over the years farmers and agri scientists have manipulated our wheat seeds and it seems to me that we could be sensitive to this hybridized wheat.
I greatly recuced my intake of wheat to help lose weight and I am feeling better. Doing the FODMAP way of eating.

I was having unexplained “spells” where I felt like I was spiralling down to unconscious, or literally dying.I would lie down where it happened and not move .eventually it would pass.Very frightening.I fortunately had a doctor that had alot of the same symptoms and with her training and money to see other drs.and tests couldn’t find an answer for herself,but eventually discovered thru DNA test she had the marker for celiac.she had me tested,while I had a marker it was not as high as hers but showed a sensitivity.changed how I ate and changed my life.there were years of many more symptoms and decking heath before I met this dr.my body was not absorbing my thyroid medicine,I was d3 deficient ,osteoporosis, a list that went on.I don’t have to be as diligent about my food as a person with celiac,but if i start feeling that awful way I will find out food had gluten in it.yes several drs.treated me as a nut case.

At the age of 14, after a horrible sudden asthma attack, the doctor wanted to do allergy testing. He only tested 40 things, 4 came back that I had an allergy to. Dog hair, wheat, mustard, and flaxseed. I never went overboard on bread so I never noticed any problems from age 14 to age 45, then my asthma came back really bad. Our son had become a vegetarian in college, and I was preparing a lot of meals with fake meat. Gluten is the protein in all the fake meat. So, I presume leaky gut would go with that also. I always show up anemic! In fact I have had 2 iron infusions.

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