Let’s Get Real About Gluten, People!

I need to blow off some steam here. I am a Registered Dietitian who specializes in gastrointestinal problems and I see patients referred from my region’s physicians and gastroenterologists.  I counsel people about the food they eat and I am getting really frustrated and concerned about all of the people out there who are restricting their diets to avoid gluten–when they have no real justification for doing it.  Let me explain.

I routinely see patients who have been diagnosed with celiac disease by small intestinal biopsies and/or by sophisticated blood tests, like serum Tissue Transglutaminase antibody IgA and HLA-DQ2 and HLA-DQ8 Celiac Disease genetic testing. I eagerly counsel them on how to find foods that are gluten-free and I help teach them how to make foods without gluten. I help them order foods in restaurants and how to make food choices away from home–things that will keep them safe and free of gluten.  I also see people who have some kind of sensitivity to gluten that does not test positive in the current blood tests for celiac disease. I try to help them find ways to protect their guts and to eat in a way that will not harm them.

It is generally accepted that celiac disease  and other gluten-related problems are greatly under-diagnosed in the world’s population. But that does not mean everyone has celiac disease or gluten-sensitivity.

There are people who just decide it would be a good idea to stop eating gluten–often without any gastrointestinal symptoms at all. They’ve read “horrible” things about gluten and it seems to them that “no one should eat gluten.” They might be a little constipated or have some intestinal gas or soft stool and they have decided they must have an allergy to gluten or they are gluten-intolerant.  These symptoms, by themselves, do not mean a person has a sensitivity to gluten. Or, they may have serious symptoms like frequent diarrhea and abdominal pain. But, they may not be considering other reasons for why they have those symptoms and they may not have had the celiac blood test. Spending 6 months on a gluten-free diet may be a loss of time–that would be better spent trying to diagnose other gastrointestinal problems. Just because we are bombarded by media messages about “gluten-free” does not mean everyone should be eating a gluten-free diet. It could also be Irritable Bowel Syndrome, Irritable Bowel Disease, Crohn’s Disease or even diverticulosis–or other less common problems in the small intestines or large intestines. Celiac disease and gluten-related problems usually occur in the small intestines.

Many people have even tested “negative” for celiac disease but still think it must be the reason for their problems. They may have a real sensitivity to gluten–or they may not. Some “gluten avoidance” lists of symptoms about what gluten can do are very long “laundry lists” of symptoms–and would probably include almost everyone. If you see a list with symptoms in every part of the body, including a lot of mental symptoms, your suspicions about its validity should go up. Avoiding gluten will not cure every uncomfortable symptom you have in your body.

These days, some people are going overboard about avoiding gluten. In this age of the internet and the quick dissemination of personal stories and health advice from non-experts, it appears some people are avoiding gluten unnecessarily. This in no way is meant to diminish the importance of avoiding gluten in people with celiac disease and gluten-intolerance–they need to avoid gluten.  But for everyone else, I just wish people would look a little more deeply into the science and medical knowledge of gastrointestinal functioning–and try to resolve their gut problems in a much more systematic and rational way.

This quick jump to assume that gluten is causing gut problems is well on its way to becoming a “crazy” diet fad. It is often the first thing a person thinks is wrong when they don’t think their intestines are functioning correctly. In reality, a lot of other problems should be ruled out first.  Maybe it is because people can now go “gluten-free” so easily that they decide to do it on their own. That in and of itself is okay to do–but not if you cling to it when you should be considering other diagnoses.

People also don’t realize, that if you really do have a sensitivity to gluten, you need to avoid it completely. Studies have shown that as little as 1/4 teaspoon of wheat flour can cause damage in the small intestines of a celiac patient or a person with a gluten intolerance.  Many patients I have who insist that they are eating “gluten-free” are actually eating quite a bit of gluten in the form of conventional foods like pizza, crackers and other wheat-containing foods. Yet, they are very restrictive at other times. If they say they are eating gluten-free, but they are still eating some gluten–they cannot honestly determine what their symptoms are and if their diet choices are making any difference.

One of the biggest misunderstandings about how food affects the gut is not understanding the timing of the body’s reaction to a food. Most people assume that if they just ate a food and then a short time later they didn’t feel good, or they had some gas, or they had diarrhea, they jump to the conclusion that the food they just ate must have been responsible.  This is usually not the case–because it takes many hours for something to go from your stomach to the bottom of your intestines–where gas is formed and where diarrhea happens. The gut is one area of the body where people think they know what is going on–but they usually don’t really know. See a doctor, a nurse practitioner, a health professional or read a book or read what a real expert on the internet has to say.  Don’t go by what a sales clerk in a store says, what you read from a random person on the internet or what a friend told you.

Make sure that if you do eliminate gluten that you don’t change a lot of other things, too.  If you go gluten-free, that’s not the best time to also become vegetarian, too–because a lot of things will be changing at the same time. If you go gluten-free, you need to make sure you get enough gluten-free sources of carbohydrate to make up for the gluten-rich foods you used to eat.  Not doing this can dramatically affect how you feel–for the worse.

Restrict gluten if you really need to–and people like me are out there to help you do it. But, if you don’t really have any evidence that you need to avoid gluten, do some research first and monitor your gastrointestinal symptoms carefully so you will really know if going gluten-free is helping.

Keep a food and symptom diary–and review it carefully. If after a certain period of time (weeks) you don’t see results, then go back to eating gluten and see how you feel (also several weeks)–making good observations and taking good notes. This is known as a “before and after” test. If you have eliminated gluten, “before,” note your symptoms, then add gluten back, “after,” and note your symptoms. If there is no difference between the two time periods, you may not be sensitive to gluten.

One in 100-130 people, worldwide, has celiac disease and an additional small number of people have a gluten sensitivity that does not test positive for celiac disease. Celiac disease is a genetic condition–so if someone in your family has it, you have an increased risk of having it yourself.

Before you jump to the conclusion that you should try a gluten-free diet, please read up on gastrointestinal problems a little more. Try to figure out what else could be causing your problems.  See a gastroenterologist and a Registered Dietitian who specializes in gastrointestinal problems. Do your homework on the subject. If you really need to avoid gluten, you will know with certainty that you are doing the right thing.

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About Ann M. Del Tredici, MS, RD, CDE

I am enthusiastic about food~~growing it, shopping for it, cooking some of it, photographing it, writing and talking about it, sometimes making paintings of it~~and eating it! I come from a long line of fruit growers, wine makers, dairy farmers, professional bakers, terrific cooks, artists and teachers. I am trained in biochemistry, food science and nutrition. I am a Registered Dietitian and a Certified Diabetes Educator in Marin County, California.
This entry was posted in Celiac Blood Test, Celiac Disease, Constipation, Crohn's Disease, Diarrhea, Diverticulosis, Gluten, Gluten sensitivity, Gluten-free, HLA-DQ2 Testing, HLA-DQ8 Testing, Intestinal Biopsy, Intestinal Gas, Irritable Bowel Disease, Irritable Bowel Syndrome, Large Intestines, Small Intestines. Bookmark the permalink.

6 Responses to Let’s Get Real About Gluten, People!

  1. glutenfreewithglee says:

    I’m sorry, but i have to disagree with you. As I’m sure you know, the food we eat today is very different from the food they ate years ago. Wheat, and all grains for that matter, because of GMOs alone is very different. I am guessing why so many people want to go gluten free is for that reason alone. It’s not good for you anyway, so what does it matter? Even if it isn’t a necessity, if someone feels better without it, then they shouldn’t eat it. Just like people don’t eat dairy if it doesn’t make them feel well or sugar and on and on I could go. They may be no allergic or intolerant to them, but they don’t feel right, so why not stop eating them?!? Gluten and gluten free is getting such a bad wrap and it’s unfair.

    • Hello glutenfreewithglee. Thank you for your thoughtful comment. I, too, feel that if a food makes a person feel bad, they should not eat that food. No one is forcing anyone to eat gluten here. What I am trying to say is that a person should be very careful about determining whether or not a certain food is bothering them–and not just jumping to a conclusion that they are a celiac or gluten-intolerant without being tested or doing a “before and after” test, with and without gluten–or without examining what other medical problems could be occurring in them. A bit of mass hysteria is starting to take over the “gluten-free” topic now–and ultimately I fear that that will be harmful to the people who do really need to stay away from gluten.

      As a health professional who sees a lot of celiac and gluten-sensitive patients, I am thrilled and very happy that there are so many gluten-free products out there. I am grateful that the FDA is finally establishing guidelines for the definition of “gluten free.” Up until now, a food company could say a food was “gluten free” and it could actually have gluten in it and there was no way to test or verify that. Now, some good and responsible food companies are testing their products for the presence or absence of gluten and reporting that on the label. This is a big advancement and help in the treatment of celiac disease and gluten sensitivity. I hope everyone who needs and wants these products can get them and use them. I hope you can eat what you want to eat–and be healthy and happy. I want that, too.

  2. glutenfreewithglee says:

    While I agree with you in that people should not jump to conclusions, many people go gluten free without ever getting that ‘advice’ from a practitioner because SO many will just write off the gluten issue altogether, as if it couldn’t possibly be a problem. Where I live, there have been reports of more than one practitioner that has told people that the tests are inconclusive or they are only 50% accurate anyway, so it’s not worth testing. I think there are WAY more gluten issues that have even been diagnosed at this point, and people are feed up with going to see someone and not getting any answers, so they do what they think MIGHT work. Again, if they feel better, then good for them! Everyone can survive and thrive without gluten, so why not try it if you aren’t getting any other answers?!
    As for the labeling thing, I don’t necessarily agree that it’s something to be thrilled about. While it’s a step in the right direction, I think more people are going to be confused and frustrated with it. You may not be aware of this, but the guidelines are that if something contains less than 20 ppm of gluten, it can be labeled as gluten free. That’s NOT gluten free at all. And while that isn’t a huge amount, if you are eating 10 different things in a day that’s labeled gluten free, but really has that minuscule amount in it, it adds up, keeping some of us very sick. For people with Celiac like me, no gluten is the “right” amount, so that’s scary. The other issue is that oats will no longer need to be certified gluten free to be labeled as such. We all know that cross contamination is a HUGE issue as well, so that’s not okay either. I think the whole thing is going to mislead people into making “bad” choices and it’s a slippery slope!!

    • Hi glutenfreewithglee,
      I am sorry that some practitioners in your area are not well-trained or well-informed about celiac disease and gluten sensitivity. With time, education and experience, that will improve. However, when some people “blame everything” on gluten-intolerance, other people respond by thinking it “is not real.” That is one of the problems with inappropriately self-diagnosing someone as “celiac” or “gluten sensitive” if they really are not–it is like “crying wolf.” Then, later, when someone else is really a celiac or gluten-intolerant, fewer people may believe them because of their past experience with someone who was mis-self-diagnosed. That’s why seeking the truth is so important–and what I am trying to emphasize here. Fortunately you were able to be diagnosed.

      Also, truth in labelling is ALWAYS a good thing–we want MORE labelling information. The new FDA ruling is just the very beginning–it will get better once more accurate and less expensive food gluten testing becomes commonplace. I am very aware of the labelling limitations–as well as the labelling guidelines in some European countries. The United States is behind the Europeans in gluten labelling disclosures. (The Italian govenment provides its celiac citizens with a certain amount of free gluten-free food each year.) Good, responsible food companies here in the USA will continue to disclose their testing practices and results. That is a good thing and we should reward companies that do that by buying their products and telling them we like what they are doing.

  3. HI ANN…I DON’T HAVE YOUR EMAIL AND WOULD LIKE TO CONTACT YOU. I READ YOUR ARTICLE ON GLUTEN, I HAVE MICROSCOPIC COLITIS AND HAVE RECENTLY EXPERIENCED WHAT I CALL AN IMMUNE SYSTEM CRASH…DIARRHEA FOR 4-6 WEEKS…THIS HAS NEVER HAPPENED BEFORE. I HAVE READ AND BEEN TOLD THAT AVOIDING GLUTEN NOW IS IMPORTANT AS IT IS AN INFLAMMATORY FOOD…NOT TO MENTION THERE MAY BE A SENSITIVITY BUT THAT IS YET UNCLEAR. I AM MODIFYING MY DIET, BASICALLY DOING ALOT OF WHAT YOU MENTION IN YOUR ARTICLE ABOUT DIARRHEA…PROBIOTICS, SUPPLEMENTS INCLUDING L-GLUTAMINE, AND MULTI-VITAMINS, CALCIUM, FISH OIL…AVOIDING TOO MUCH RAW…(THOUGH I THINK I NEED TO GET MORE INFORMED ABOUT SOLUBLE VS. UNSOLUABLE). MIGHT YOU SPEAK ABOUT MICROSCOPIC COLITIS SPECIFICALLY? IT WAS TRIGGERED AFTER I DID A TWO WEEK CLEANSE…ELIMINATING DAIRY, ALCOHOL, SUGAR, GLUTEN AND CAFFEINE.

    • Hello msirisbritostevensS,

      I am a Registered Dietitian and not a physician. I can only speak generally here about your question. For patient confidentiality reasons, I will not address your specific case here.

      Microscopic colitis is not related to celiac disease or gluten sensitivity. It is a disease of the colon, whereas celiac disease is a disease of the small intestines. Microscopic colitis also has a very specific and effective treatment plan that your gastroenterologist will be familiar with. If you haven’t seen a gastroenterologist, you should see one. In undiagnosed (or misdiagnosed) patients, it is sometimes mistakenly thought to be celiac disease because of the symptoms they have in common. This is partly why I wrote this blog piece–to tell people to get tested for celiac disease before they assume they are reacting to gluten. Don’t assume gluten has anything to do with it. Don’t try and self-diagnose this.

      “Cleanses” are not necessary to do–the digestive tract is perfectly designed to clean itself–constantly. If you took some preparation or a potentially irritating food/substance for the “cleanse” it could have been irritating enough to trigger the microscopic colitis. Many so-called “cleanses” are potentially irritating and dangerous.

      Gluten is not irritating unless you are a celiac or if you are sensitive to gluten even if you test negative for celiac disease. A very simple blood test is now available for celiac disease and biopsy of the small intestines is sometimes the best way to diagnose celiac disease if the blood test is inconclusive. Microscopic colitis is often diagnosed with a colonoscopy or a sigmoidoscopy with biopsy samples taken.

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