There’s been a bunch of news articles and blogs posted that state that unless you have celiac disease you cannot possibly be harmed by foods that contain gluten. This concept is factually incorrect and completely irresponsible to spread around.

It’s time for people who are not scientists, who are not doctors specializing in allergies and/or auto-immune diseases, and who have no physical issues with food themselves, to stop writing insensitive blogs that suggest that people who can’t digest gluten are lying about it. It is dangerous to spread false information about food allergies.  Your misinformed words could wind up making someone severely sick.

I am glad that society is finally at the point where people have a generalized understanding of what celiac disease is. I remember when that disease was completely unheard of. The first time I learned about it was when I was listening to “Steve and Johnnie” talk about it on the radio. They were on WGN, a radio station that can be easily heard in Chicago (and surrounding areas).

I remember them talking about when Steve got sick. The doctors didn’t know what caused it. His symptoms were severe, and getting worse, and no one seemed to know what to do to help him. Eventually, a doctor figured out that Steve had celiac disease. He stopped eating foods that contained gluten (wheat, rye, and/or barley) and started to get better.

I have a ton of food allergies, and listening to Steve’s story scared me. He and Johnnie talked about how difficult it was for Steve to find safe food to eat. This was long before grocery stores started carrying gluten-free versions of foods. I remember hoping that what happened to him would not happen to me.

In reality, something very similar was already happening to me. When I was 17 years old, an allergist did two different types of allergy tests on me. One was a blood test, and the other was a skin test. Both confirmed that I had a bunch of food allergies – and that some of them were very severe. (It also confirmed that I have a ton of other types of allergies, too).

Those allergy tests were done around 1990, years before Steve and Johnnie talked about celiac disease on the radio. I remember the doctor pointing out that I was extremely allergic to wheat, rye, and barley. He kind of shrugged, because he hadn’t yet heard about celiac disease. He vaguely said something about trying to limit the amount wheat, rye, or barley I ate. The word “gluten” was not used.

I was given a detailed list of foods to avoid (based on what the allergy tests showed). For example, I am severely allergic to oranges, and was told to drink apple juice instead of orange juice for breakfast. I am lactose intolerant, and was given a list of foods that contain dairy that I needed to avoid. Nothing was said about gluten. This wasn’t the doctor’s fault. Celiac disease wasn’t well known back then.

For years, I ate foods that contained wheat (or rye, or barley). As such, I spent decades assuming that having stomach pain and severe stomach cramps was “normal”. I assumed that the gastrointestinal difficulties I had, ever since I was a little kid, were due to some of my other food allergies. I thought everyone got completely exhausted after eating a full meal. Itchy skin, that randomly produces hives, must have meant I touched something I was allergic to. It couldn’t be from food, right? It turns out that none of that is “normal”.

It wasn’t until I was an adult (somewhere in my late 30’s) that I figured out what the problem was. It was almost by accident. I decided that I wanted to try and lose some weight. I was going to be a bridesmaid at my sister’s wedding and didn’t want to deal with Irish Catholic relatives speculating about whether I was pregnant or just fat.

As such, I decided to try the Atkins diet. It seemed to be one that let you eat real food (instead of the pre-packaged frozen meals that come with a specified number of “points”). It also would let me work the diet around my food allergies. The Atkins diet requires people to give up carbs – and that includes things like bread, pasta, cookies, and pastries. Guess what all those items contain: gluten.

Looking back, I think I lost a few pounds from the Atkins diet (but ended up gaining most of them right back). At some point, I decided to give up on the diet. It helped me feel a bit better, but wasn’t working the way I hoped it would. My stomach stopped hurting, but I didn’t really think about it. The point was that I wanted to lose weight, so I wasn’t focused on lack of symptoms.

One day, after giving up on the diet, I ate a plate of whole wheat pasta. It was something I’d eaten in the past, several times, and never noticed a problem with. This time, things were different. I ate the pasta and my skin started to itch almost immediately. The stomach pain returned after I’d eaten about a quarter of the meal. Debilitating exhaustion followed. This was troubling, confusing, and a bit scary. It happened so fast!

Then, it dawned on me. The pasta contained wheat. I stopped eating, and got up to look for copies of my medical records. (Yes, I have physical copies of most of them). Over the years, I had completely forgotten that the allergy testing I had done when I was a teenager found that I was severely allergic to wheat, rye, and barley. On a one to six scale, they were all at a six. All at once, I realized that I was among the many people who cannot digest gluten (something that is in all three of those foods). No more pasta – or bread – or cookies – forever. I was incredibly depressed by this realization.

Since then, I stopped eating foods that contain gluten. Did you know that soy sauce contains wheat? Soups have wheat added to them. Rice Krispies cereal contains bran. Gluten is in a ton of things that most people would not realize. I was used to having to be super careful about what I ate because of food allergies. Gluten was the hardest one to avoid because so many foods are made out of it or have it added in.

I did not lose weight, but I did go down a couple of clothing sizes (and half a shoe size). Why? The answer has to do with inflammation. Eat foods that you are allergic to and your body will experience inflammation. Stop eating them, all of them, for a very long span of time, and that inflammation will go down. As such, by the time I got to my sister’s wedding, I still looked fat (but not pregnant). No gossiping aunties asked me about a “baby bump”. It was no longer there!

I tell this story because I want to make it clear that my inability to digest gluten is not “all in my head”. I wish it was something fictional! If I was faking it all this time that would mean I could just go right back to eating pizza, cookies, and freshly baked bread anytime I wanted – with absolutely no side effects. Instead, I have medical documentation that makes it clear that I should never have been eating the foods that contain gluten at all. It is impossible to “cheat” on an allergy test.

It is extremely unlikely that I am the only person on the face of the planet who cannot eat gluten due to allergies. This means that there are plenty of people who, like me, do not have celiac disease and yet, cannot safely eat wheat, rye, or barley – or gluten. Therefore, the plethora of blogs and news articles that claim that only people who have celiac disease are harmed by gluten – and that everyone else avoiding it is being stupid – are flat out wrong.

There are many problems that arise when it becomes “trendy” to write articles that state that most of the people who are avoiding gluten have no reason to do so. The most obvious one is that these misinformed, inaccurate, articles cause the general public to believe that everyone who doesn’t have celiac disease should immediately start eating gluten. If they refuse, well, they’re just being difficult.

I’ve seen opinion pieces that state that people who do not have celiac disease are avoiding gluten because they want to appear “trendy” and they think that the “gluten-free diet” is the newest way to lose weight. I’ve seen blogs that insist that people who are avoiding gluten (and who don’t have celiac disease) are doing it because they have a pre-existing unhealthy relationship with food. In other words, there is this ridiculous belief that people who avoid wheat, rye, and/or barley actually are anorexic or bulimic and trying to hide it by insisting they cannot eat gluten.

Every time an article gets passed around the internet, that insists that gluten is totally safe unless you have celiac disease it makes it that much harder for people with food allergies to be taken seriously. Suddenly, my request for a gluten-free menu at a restaurant causes those within earshot to roll their eyes. Eventually, as the general public is coached to believe that almost no one really needs to avoid gluten, restaurants will stop offering gluten-free options. They will assume the gluten-free diet is a trend.

When the next fad diet appears, the restaurants will cater to that one instead. Meanwhile, those with celiac, and those with allergies to gluten, will have more difficulty finding safe foods to eat while dining out. Or, even worse, the restaurants will presume that since almost no one is negatively affected by gluten, there is no longer a need to avoid cross-contamination in their kitchen. Go ahead, throw the gluten-free pizza crust down on a counter that is covered with wheat flour. The people requesting the gluten-free pasta are just doing a trendy diet, so why bother with extra precautions?

Allow me to educate people who have no food allergies (and no loved ones with food allergies) what happens when a person says he or she can’t eat something because they are allergic to it. Someone will insist they “just try a little bit” of that food. Or, they will insist that the allergic person must eat a little of it so as not to offend whoever is hosting Thanksgiving dinner. Or, there’s the ever popular: “Well, you’re going to have some (name of traditional gluten-filled food) anyway, right? It’s (name of holiday)!”

I am extremely annoyed that so many misinformed articles, that strongly imply that food allergies to gluten cannot possibly exist, are being passed around the internet in the weeks before Thanksgiving. Those writers need to realize that their articles, which I’m sure got plenty of page clicks, are going to make the biggest feast holiday of the entire year that much more dangerous for people with allergies to gluten.

Someone is going to get sick, severely enough to require hospitalization, because a bunch of writers decided it would be cool to teach people that only those with celiac disease have to avoid gluten – and that everyone else is “faking” their supposed allergy. Those writers obviously have no idea how difficult it is for an allergic person to convince healthy people that allergies – to anything – truly do exist. Now, people with food allergies have to undue the damage caused by those writers who (by intention or accident) set out to convince the general public that people who claim to be allergic to gluten are just being unnecessarily picky eaters.

This is especially concerning when the same article mentions some study that was done in which people who self-diagnosed a gluten intolerance failed to get sick after eating foods that secretly contained gluten. Those writers are encouraging people to try that out at home. People who are tired of hearing about the “trendy” gluten-free diet are going to stick wheat into something that doesn’t normally contain it in an effort to “trick” a relative into revealing that he or she was faking their gluten allergy the whole time. Instead, that relative is going to get really sick.

The person who contaminated the food is, of course, at fault. The writers who insisted that only people with celiac disease are harmed by gluten, and that nobody else could possibly get sick from it, are also at fault. I doubt most of the writers of those kinds of articles care about that, though. They obviously don’t believe anyone, other than those with celiac disease, can be harmed by gluten. And, let’s be real, they already got tons of page clicks for those articles (and more each time a link to it gets passed around the internet).

Want to write an article that differentiates between those who really can get sick from gluten and those who cannot? There is a responsible way to do it. First, start off your article with a clear, medically accurate, description of what happens to the bodies of people who have celiac when they consume gluten. Next, follow it up with a clear, medically accurate, description of what happens to the bodies of people who are allergic to wheat, rye, and barley if they consume gluten. Point out that the allergic people cannot digest gluten, and that the people with celiac disease cannot digest it either. Do it this way, and you reaffirm that both celiac disease and food allergies to gluten are real.

After that, write a few sentences that inform people that there are tests that can identify if a person has celiac disease. Also mention that allergy testing can help a doctor to determine whether or not a person has food allergies (and to which foods). Make it abundantly obvious that there are people who will get very sick if you secretly add gluten to something they are about to eat or drink.

Once you have established that yes, some people are harmed by gluten, and that it isn’t just people who have celiac disease, you can continue with your article. If your point was that there are some people who are avoiding gluten because they think it is a weight loss plan, now is the time to say it. Point out that their bodies are not actually harmed when they consume gluten.

Mention that some people have been reading popular diet books that encourage the belief that all of a person’s excess weight will magically disappear if they stop eating wheat. Discuss why that is an unrealistic expectation. Reiterate that there are tests that can determine if a person has celiac disease or an allergy to foods that contain gluten.

It is also a really good idea to stop writing sensational headlines about health related issues. It is irresponsible to write a headline like: “You Don’t Really Need to Avoid Gluten”. Many people read the headlines and assume they know what the article is about. This type of title suggests that everyone avoiding gluten is being dumb and that no one could possibly be harmed by consuming gluten. Obviously, that is simply not true. Try “Most People Don’t Need to Avoid Gluten”, instead. Follow that up by making it clear exactly who does need to avoid gluten.

There are very few health related issues that the general public is repeatedly encouraged to ignore. Nobody would insist that a person wearing a cast on his leg was “faking” a broken bone. A person who has a head wound that is dripping blood is not going to be told that he or she is not really hurt – but is bleeding because they want attention. People avoid offering sugar laden foods to people whom they know are diabetic.

Somehow, food allergies are different. People are encouraged – in articles like the ones I’ve been talking about – to assume that when a person says he or she has a food allergy that they are lying. Little kids in elementary schools are being bullied because of their food allergies. Often, the bullies are other students who threaten to force a kid with a peanut allergy to eat a peanut. Sometimes, it is the adults who are angry that their healthy child can’t bring a peanut butter sandwich to school anymore because somebody else’s kid has an allergy (that this parent doesn’t believe exists).

Articles that insist that only people who have celiac disease need to avoid gluten are not helpful. Perhaps the writers intended to point out that those who are choosing to eat a gluten-free diet as a weight loss plan would do better if they counted calories and got more exercise. Instead, their words are encouraging people to assume that it is impossible to have an allergy to (or intolerance to) gluten. In reality, there are plenty of people who are avoiding gluten because their bodies cannot digest it. This includes people with allergies. It’s not just celiac disease!

Posted in Out of Spoons, Spoonie WritingTagged

Leave a Reply

Your email address will not be published. Required fields are marked *