Everyone has the right to eat how they choose, and taking part in the gluten-free fad is your right. You don’t have to eat gluten, even if you could. I’m not telling you that gluten-free food is off limits for anyone.
But this presents a real and legitimate problem for celiacs. Our disease is invisible, so people don’t quite believe it exists. It has become a joke in our society, but we can’t afford to joke about it. It isn’t funny to those of us who rely on gluten-free food to survive. We didn’t choose it, and we suffer all the time because of it. And because of the fad, we suffer even more. “But you don’t look sick,” are words that are very hard to hear when you feel horrendous, and people judge you from the outside when the inside feels very different. Of course no one wants to look sick, but, unfortunately, people have a hard time believing in something they can’t actually see.
How eating gluten-free became the butt of every comedian’s jokes is beyond me. I’ve seen gluten-free diets and the people who follow them ridiculed in movies, on late-night talk shows and day-time talk shows, and in stand-up comedy routines. I understand that diet crazes are an easy target for jokes, but words spoken by influential people have consequences, even when the intent is laughter. If the public sees being gluten-free as a joke, a silly fad, or just a way to make money, or worse yet, something deserving of derision and disgust, that puts me and all other celiacs at a greater risk of gluten contamination when we go out to eat or purchase packaged food from a grocery store. I’ve said it before, but I’ll say it again: only 1/8 teaspoon of gluten is all that’s needed to make me, or anyone with celiac disease, incredibly ill. I’ve been “glutened” and been rendered unable to get out of bed for weeks. Then, there are all the restaurant owners and chefs and small product manufacturers who see this joking and derision or just the light-hearted attitude about gluten-free, and think they can take advantage of the trend and make some money on their products without actually making them truly, purely gluten-free.
Or think about the family member or friend or employer who doesn’t understand this disease. They hear frivolous comments and laughter, and they think it’s okay to make fun of someone who eats gluten-free, behind their backs or in front of their faces. Worse yet, they began to suspect that not only is gluten-avoidance not all that serious (“Oh come on, just eat the toppings off the pizza, stop being so much trouble!”), but they may also suspect that your excuses for not coming into work or cancelling plans or needing to rest aren’t really valid, either. Maybe you’re just lazy. Or a hypochondriac. Or crazy.
I could go on for days about why this seemingly harmless joking has a ripple effect, way beyond what I’m sure any on comedian ever considered when writing or making a joke about gluten. I’m not accusing anyone of being mean-spirited. I am simply asking people, from the bottom of my heart, to please, please stop the jokes. Even if you don’t mean to harm, even if it really would get a good laugh, even if you would enjoy the knowing nods and mutual eye-rolling, please stop. This is not about hurt feelings. This is about people’s lives.
This disease does not discriminate. It does not come in one size, it does not affect a certain race or age, nor is it one clearly defined package. It is not recognizable by one set list of symptoms. You cannot spot it walking down the street. You cannot see it with a stethoscope or diagnose it definitively with a blood test. You cannot look at someone and say, “You have symptoms x, y, and z. Therefore, you have celiac disease.” It is elusive and maddening not only to you, but to the world around you. People are comfortable putting people into a category, doctors included, and when things don’t make sense to them, you are the one who is “wrong,” and you, unfortunately, will be the one to suffer. This is why I call it the invisible disease.
When you have an invisible disease, you deal with much of the suffering on your own, painfully and silently. Even if you explain in great detail what’s wrong with you and how you feel, it can fall on deaf ears sometimes. Others can’t see your stomach pain or muscle weakness or painful joints. They can’t feel your panic attacks or depression or the mental anguish. They can’t see a damaged small intestine, or a body so unable to absorb nutrients that every organ in your body is under attack and fighting for survival.
Sure, they can see a rash or if your hair and eyelashes and teeth are falling out, but they can chalk those up to all kinds of other issues. They can see the intense swelling and darkness under your eyes, even through thick makeup, but they will probably tell you, like they always tell me, that it’s just age, or that you’re just not getting enough sleep. I can’t count how many people have asked me, “Are you tired?” or rudely told me, “You look exhausted.” Yeah. Thanks. It’s called celiac disease.
If someone just doesn’t look very good, it’s easier to blame them for an unhealthy lifestyle than it is to see this invisible disease. If someone is feeling anxious or panicked or irritable, it’s easier to blame them for having a personality problem, a bad upbringing, or label them as “difficult,” or crazy, than it is to see an invisible disease. If someone can’t go to work, or to school, or even out to meet a friend, or to a planned function, it’s easier to roll your eyes and shrug it off, and call that person lazy, lame, flaky, or a loser than it is to see this invisible disease.
These are some of the labels we deal with, whether diagnosed yet or not. It’s painful and hurtful, and it can destroy your relationships, your career, your reputation, your education, even your family. All because “you don’t look sick”; and without evidence to support your complaints, your days out of work/school, missed engagements, and “flakiness” with friends, the outside world appear unforgiveable. Never mind that you are dealing with a disease—not an allergy, not a fad diet, not “craziness.” It’s a disease, and a serious one, and the sooner people are better educated about it the better and easier all of our lives will be.
What everyone needs to remember is that no one with celiac disease chose to have celiac disease.
Judgment
I’ve been judged by my appearance all my life—you probably have been, too. If you don’t look sick, then good for you—but when someone judges you and your capabilities based on how you look, they are often going to get it wrong, especially in the case of a celiac. If how you look doesn’t match how ill you are or how serious your disease is, then judgment isn’t just insulting. It can be life-threatening.
You may also judge yourself. In fact, I’m sure you do. If you are dealing with horrible health issues, but you can’t get a diagnosis, you may think you just need to change your attitude, or go on a different diet, or manage your stress better, or just do something differently because it must be your fault.
Then, once you do get diagnosed, you might judge yourself again. If you are eating gluten-free (or you think you are), but you still deal with horrible health, then you might decide that it’s your fault again. You’re a bad celiac!
With celiac disease, there is almost an attitude that those who suffer from it deserve the jokes and ridicule. People think those of us who cannot eat gluten are just being difficult or making a big deal out of a minor digestive issue. They think our demands and requirements are inconvenient and annoying. We are too much trouble. We are overreacting. A “reporter” once called me a “spoiled celebrity wanting attention” after my last job on the cop show.
Recently, a woman and her daughter came into the bakery from Albany. The young girl was seventeen, and had been in and out of the hospital. She wanted to come see me because she said my blog was the only place where she found someone really talking about the downside, the ugly side, and the blatant truth of this disease. She felt like I understood what she’d been through, and that’s sometimes all someone needs: understanding. She had a horrible history of brain swelling and other extremely severe symptoms, but she wanted to go to college. She has finally managed it, but it’s a constant battle. She gets tortured in her dorm room because when everyone has pizza, they think it’s funny to try to make her eat it, or stuff it in her face. Another reason why jokes about celiac are just not funny, but actually dangerous.
The Truth
Many people get ecstatic when they hear that a popular doughnut company is coming out with a gluten-free donut, or when a chain restaurant adds gluten-free options to the menu, or when a giant company that makes a food they used to love gets on board with the trend and starts making a gluten-free line of snacks or frozen pizza or whatever it is. But here’s the deal: no matter how much those snacks and treats make you feel “normal” or like you have your old life back, most of them are full of crappy ingredients—and they may not be truly gluten-free anyway. Those giant multinational companies that make gluten-free doughnuts and invest in gluten-free menus and packaged gluten-free food (every big company these days seems to have a gluten-free something) don’t truly care about our health. Okay, maybe some of them do, and to them, a big you are awesome shout-out. Unfortunately, however, most of them don’t, or they don’t understand just how strict a product needs to be in order to be truly gluten-free and safe. They spend millions of dollars trying to convince you that they care about you, that they’ve given you a gluten-free cereal, or a gluten-free cookie, or a gluten-free muffin, or a gluten-free Friday night spaghetti dinner special because they understand. I say double check and triple check to make sure that you’re getting exactly what you think you’re getting.
I’ve researched the ingredients on packaged gluten products and I’ve peeked into the kitchens of restaurants that have gluten-free menus. There is an actual ingredient in one of those “we care about you” cereals that is disturbingly close to formaldehyde. Really? Look at some of those gluten-free product labels for yourself. Ask to see the restaurant kitchen and determine for yourself how “pure” their center for preparing gluten-free food really is. Ask questions. Be an informed consumer. Even be a pain in the ass. Then you’ll see what’s really going on. Just please be aware.
I know it’s tough—especially if you have a kid with celiac, and your kid just wants to eat what everyone else is eating. But do you really want to put a bunch of fake, “healthy” ingredients into your just-healing body—or your kid’s? “Where do I get better, more healthy products?” is a common question I get. And the answer is actually really easy. I always say: Default to naturally gluten-free foods. Fruits. Veggies. Gluten-free grains. But I know you want convenience foods, at least some of the time; we all do. There are some small companies who really do care, who produce nutrient-dense organic food in facilities that are truly gluten-free. But you have to look for them. Look online. Visit celiac forums and talk to the people who have already done the research. But do it yourself, too, because formulas are always changing and companies get sold to bigger companies. That’s why I don’t want to list anybody. I don’t want a formula to change, and for you to get sick on my recommendation. But there are good people and there is good food out there, and new companies and products come out all the time. You can order it online, and they will send it right to your door. Three companies I trust to source quality products:
Shoporganic.com, for organic groceries, cleaning supplies, personal care items, and products for babies, kids, and pets. They also have special products for gluten-free, kosher, raw, vegan, and pale diets, and you can buy many items in bulk, from dried beans and coffee to nut butter, dried fruit, natural sweeteners, and spices.
Vitacost.com, for supplements, vitamins, food, home products, personal care products, and products for babies, kids, and pets. You can also buy herbs in bulk, gluten-free products, raw food, protein powder, kosher foods, vegan foods and products, and coffee, and tea.
Gluten-free Mall, at www.celiac.com/glutenFreeMall, for pretty much every gluten-free product.
In the spirit of doing something rather than merely complaining, I am in the process of securing my own Jennifer’s Way facility that will be a dedicated gluten-free, dairy-free, peanut-free, soy-free, non-GMO, organic haven where I can make my products. Once this is accomplished, everyone (not just lucky New Yorkers who can come to my bakery) will be able to have access to the healthy and safe food I make for them.
The Gluten-Free Fad
A woman came into my bakery recently and asked me a question that a lot of people have asked me—in person, on my blog, or on the celiac forums: “Don’t you think it’s so much better now that there are a lot of gluten-free options out there?”
My answer: Absolutely, positively not. No, I do not think it’s better. I think it’s one hundred times worse, because now restaurants are confused, and food manufacturers are confused, and everyone is confused. They are confused because they can’t tell the difference between the person who wants to go gluten-free to lose a few pounds, the person who thinks they should go gluten-free because some famous person is doing it, the person who does it because they have some vague notion that gluten is bad without even knowing why, or the person with celiac disease who can become seriously, seriously ill from eating even microscopic amounts of gluten. People who are gluten-free by choice won’t get sick from having a gluten-free cookie that’s been placed next to a conventional cookie in the pastry case; people who are gluten-free by choice can have the croutons removed from the salad, eat the salad, and not be ill for days. The sad fact is that because celiacs are now suddenly in the minority of people shunning gluten, businesses may think that something can be free of gluten, but doesn’t really have to be totally gluten-free because it’s not that important.
In fact, there is even a new Food and Drug Administration Gluten-Free Food Labeling Act that says a packaged food product that is labeled gluten-free must contain less than twenty parts per million (ppm) of gluten. First of all, the act is voluntary, meaning companies don’t have to follow it. And even if they do, the requirement says that gluten-free products can contain twenty ppm of gluten. Not zero gluten.
In other words, gluten-free products can contain gluten, legally, according to the FDA.
Part of the problem is that the current gluten tests they use cannot detect anything below twenty ppm, so even if a product has zero gluten, there is no way to verify that. So until we get better technology, and until the government takes celiac disease more seriously, this is what we get. (And this is just one more reason to cook your own food at home!)
I believe that everybody has a right to eat what they want and not eat what they want. You don’t like gluten? Don’t eat it. But I just want that very large and increasing group of gluten-free by choice people to realize that they are hurting our small, significant group of gluten-free people who actually truly need gluten-free food to live—gluten-free and pure and safe. I can’t tell you how many restaurant menus I’ve seen that list gluten-free this and gluten-free that, and GLUTEN-FREE MENU in big letters, but which then have a very tiny disclaimer, in very tiny letters, that says, “Not recommended for celiacs.”
Really? Really? This is not okay at all. We need this food. We don’t want it. We need it to live. We didn’t choose to have celiac disease. And you’re going to single it out and dangle it in front of us as something made for us, but then you’re going to tell us that it’s not made for us after all? It’s not just cruel. It’s dangerous, because people don’t often notice those tiny letters at the bottom of the menu. What makes me sad about the whole thing? It all comes down to money. It’s not about health or weight loss or any celebrity. People love fads, and so does big business. Fads are sources of revenue for a lot of businesses. I get it, everyone has to make a living, but at what cost? When enormous multi-million-dollar industries have to get in on the latest fad, that’s expected, but it should never be at the expense of people’s health! Should it? If you’re going to use the gluten-free trend to draw customers in and make money, then take responsibility, do it right, and make it for everyone, even celiacs.
When Medication Can Make You Ill
There is a regular customer who comes into the bakery all the time, and, like many others, she comes in not just to eat, but also to talk to someone who understands. She confided in me that because of her celiac disease, she has developed a serious thyroid problem, and that even after being totally gluten-free for a year, she was still getting sicker and sicker.
Finally, I sent her to my doctor. He took her blood and it showed that she was still having gluten somewhere. He thought her gluten-free thyroid meds were suspect. He sent them to a lab to have them checked, and, sure enough, they came back containing a small percentage of gluten. Small, but it was enough to keep making her sick. She’d been taking them for a year, and she was even more ill than before she’d started taking them. She’d been poisoning herself with medication that was supposed to be healing her.
I am not telling you to stop taking medication prescribed by a doctor that you need, but saying that if you can possibly stay away from prescription medications, do it. Medication should be your last resort. If the first thing your doctor does is reach for the prescription pad, it’s time to find a different doctor.
Sometimes, you need medication. If you have a serious infection, you need antibiotics. If you have certain other diseases or complications that only medication can resolve, you may have no choice. The problem is that because celiac disease causes so many symptoms that mimic other issues (or turn into other issues), a lot of celiacs are on a lot of medications, and a lot of them may contain gluten. A lot of them may also be unnecessary.
I can’t tell you how many people I’ve talked to who pull out all their bottles of medications and pile them on the communal table in my bakery, and say: “Look what I have to take every single day!” It’s insane. If you get yourself back to health, you won’t need all that. Maybe you’ll still need some of it, but I sincerely believe that nobody, nobody needs to take twenty-five pills every day. Once you know your issues and have gotten off gluten and dairy, talk to your doctor about reducing or eliminating your medications in a safe way. But if you have to, absolutely have to be on medication, you cannot take the generic.
This is a huge point of contention with insurance companies, not to mention pharmacists. I’ve had so many unpleasant conversations with pharmacists who either didn’t know whether something had gluten, or insisted that it didn’t when their sources were not, in my opinion, reliable enough to keep me from becoming ill.
The problem is, the insurance company wants to pay for a cheaper generic, rather than a brand drug (and some will only cover generics). But you don’t want that. The brand will have a more reliable ingredient list and can better tell you for sure that the medication doesn’t contain gluten. Generics are cheaper because they often contain cheap fillers—often made with gluten. I’ve spent hours on the phone with the insurance company, explaining to them that I can’t have gluten, only to hear some version of, “Well, it says the generic doesn’t have gluten, so we’re not paying for the brand.” And then you’re stuck either risking becoming bedridden or shelling out $300 or more for a bottle of medicine. It’s disgusting.
What can you do about it? Here’s a fact: drug companies do have to disclose everything in their products, but they don’t necessarily have to disclose them to you, and they won’t always disclose everything accurately. Generic drugs, however, may not have to disclose everything.
Your first step is to be sure gluten isn’t already disclosed. An over-the-counter medication supposedly has to list all its inactive ingredients on the package, but a prescription drug likely lists these in the package insert. If you get your medication from a pharmacist, however, you might have to ask for the package insert. Then you have to know what you are looking at. For example, a prescription won’t say “gluten,” but it might say “wheat starch.”
You also might have to go through a lot of baffling text to find what you are looking for, unless your pharmacist is willing to point it out. But even then, beware. Formulas change. People make mistakes. Companies lie. The bottom line is that generics are more likely to contain gluten. (And if it’s a supplement, be doubly on alert: supplements don’t have to disclose all their ingredients! They can have so-called proprietary formulas that contain gluten, and you might never know.) Honestly, all I can suggest with supplements is to look for those labeled gluten-free, and research, research, research. Ask questions, talk to other celiacs, and stay vigilant. It will drive you crazy, but until the FDA passes and enforces a law that everybody needs to label everything, that’s the only choice we have.
Truth in Labeling
Of course, labeling doesn’t just affect medications, it affects food. I know there is much talk about GMOs (genetically modified organisms) these days. A lot of our food contains genetically modified components, and we have no idea how that is going to affect us. What really disturbs me is the recent pushback against labeling food that contains genetically modified organisms. Right now, you would not believe the amount of money enormous companies—companies you think are on your side, “natural companies”—are spending to stop GMO labeling because they don’t want you to know there are GMOs in their products.
My question is, if GMOs aren’t bad for you, which they say is the case, then why not label them? Why not put it on your product? I’ll tell you why: because they know people are getting wise to it all, and they know people don’t want GMOs in their food. We have no earthly idea what kind of effect genetically modified food is going to have on us, and we probably won’t know for at least another generation. There was a study done on laboratory rats that were given only GMO foods. They developed tumors twice the size of their entire bodies! Food companies are experimenting on us like a bunch of guinea pigs, and on our children, too.
This has to stop. I personally believe the tinkering with the food supply is exactly why we have suffered such a dramatic rise in autoimmune diseases, allergies, autism, and other chronic diseases, like cancer and heart disease, in recent years. Wheat has been tinkered with so much that it barely resembles its original form. The same goes for corn. Even if a food isn’t genetically modified, it has been selectively bred for centuries, so it is far from its natural, original form. Crops are modified to grow quicker, and taste sweeter, and resist pests better, and stay fresher longer. It’s no wonder our bodies are so confused.
We should have a choice, and we should be informed, celiac or no celiac. Maybe you don’t think GMOs are so bad. Maybe you like what they do for your food, but even then, you have a right to know what you are eating. To have a real choice, we need all the information. This is about full disclosure, and when you have celiac disease, you need full disclosure, in every form, in every aspect of your life, with everything you put in your mouth or put on your skin. Your food, your medication, your face cream, your lip products, all of it.
This is a lot to digest—and none of this is meant to scare you in any way. It’s just to inform you about some of the things we are up against. Knowledge is power, and the first step to change. Let’s start with how people think about and treat those of us with celiac disease, because that simply must change. It’s time to stop being complacent and sitting idly by.
Talk About It
Someone once gave me a book about going gluten-free, thinking I would relate to it or that it might help me. I remember reading the part that said (I am paraphrasing), “At a social event, don’t talk about it. Be light. Bring your own chips and talk about your favorite sports teams.” That’s when I closed the book and threw it away.
I refuse to deny that I have a serious health problem. How will that help anybody else understand, or raise awareness for what celiacs have to endure? I’m not saying I’m going to go out and evangelize about being gluten-free to people who don’t want to hear about it, but if it comes up in conversation that someone has been struggling, the way we have all struggled, then maybe something you say is going to click, and they’ll say, “Wait a minute, that sounds like me.”
I have to say I’ve probably had a hand in getting about fifty people diagnosed, just by talking about it openly. A friend of my mom’s was diagnosed with Crohn’s disease and had been on chemotherapy drugs for years. When my mom mentioned that her daughter had celiac disease and that Crohn’s is very similar, the man got checked, and not only did he not have Crohn’s disease, but he did have celiac disease. He’d been taking those chemo drugs unnecessarily, while he continued to eat gluten.
I’ve also noticed that women are more apt to talk about these things than men: their stomach, nerves, hair falling out. Men don’t like to talk about their health. It’s a very difficult disease for anyone, but men don’t like to go to the doctor for whatever reason, and they certainly don’t want to talk about stomach pain. So, to have a grown man, a tough, burly construction worker walk into my bakery and say to me in his very Italian New York accent, “Jennifer, when I read your blog and you talked about back pain, I thought maybe I should get checked for this disease.” He’d been suffering from lower back pain for years. He’d been given anti-inflammatories, nerve relaxers, exercises, and nothing helped. When he read my blog about lower back pain due to my bowels being twisted and inflamed, he looked into it, and what do you know? He had celiac disease. He came in and thanked me. You could see it was difficult for him, but he was so grateful to know.
There have been plenty of others whom I’ve met along the way who literally have come to me and said, “The conversation we had that night changed my life, and I got a diagnosis,” or “Thank goodness you told me about the link between celiac disease and diabetes because now I know I have both,” or “I never knew that having MS/lupus/another autoimmune disease meant I could be sensitive to gluten and dairy, but, thanks to you, I cut them out and I’m feeling so much better.” One woman came in the bakery, an older woman who had only been diagnosed a few years earlier, who was trying her best, but her doctor hadn’t given her very much direction or clear instructions, nor had he emphasized to her how serious it was to be completely off gluten and dairy. At her last visit, the doctor told me that she looked like she might be developing lymphoma, and she was terrified. She came in for treats, but wound up crying and begging me for help. Of course, all I can do is give my non-medical opinion, but I suggested that she forget about dairy and perhaps find a new doctor who could give her better information. I sent her to Dr. Fratellone, and she has since written to me many times to tell me how wonderful she feels and how she has avoided cancer. And how she is completely off dairy.
You never know what power your words can have. To have all these people come back into my bakery to say thank you with tears in their eyes is huge.
So, I’m telling you, you can have an impact. Don’t be afraid to talk about it. Helping other people will help you get over your feelings of helplessness. Believe me, I still have days where I feel helpless, and I am not negating any of your feelings, but take it and turn it around, and realize that your words are powerful.
You now know something because you have a diagnosis. Think about how you felt when you didn’t have a diagnosis and take the social opportunities to educate. Not to stand in the middle of a party telling everybody about your years of diarrhea and constipation and throwing up and falling down. You’re not going to do that. But you don’t have to limit the conversation to your favorite sports teams, either. All you have to do is say, “Here’s what I was going through, but when I learned what was wrong, here’s what I did.” You can change lives beyond your own.