The Gluten Free Diet is NOT a Fad Diet!

I wrote the following as a comment on another blog after someone said they couldn’t wait for the gluten free fad diet to go away. Usually I ignore those comments. This time, for whatever reason, I didn’t. The words poured out and I decided to edit it and post it on my blog. So without further ado, here is my response to those who believe the gluten free diet is just another fad diet.

Okay, that’s going to prompt me to pull out my soapbox. 😉 I have to confess, I have mixed feelings about the current faddish aspect of the gluten-free diet. On the one hand, it’s educated the broader population. A lot more people now at least know what gluten is. That makes it much easier for me to explain what I can and can’t eat. Restaurants have become a lot more sensitive and knowledgeable about food allergies, sensitivities, and intolerances in general and gluten specifically. (Even though what I have isn’t an allergy, the treatment is the same as that for an allergy.) And it’s now a lot easier than it was to identify a gluten-free food product with confidence. (Part of that is also a result of the labeling regulations the FDA has developed.)

With that said, it has also led to a widespread dismissive attitude by people who treat it like just another fad diet. Mostly I ignore it, but the stories of restaurant chefs and servers who deliberately contaminate food because they are irritated about this “fad”, though thankfully uncommon, are always in the back of my head any time we eat out. Even when someone isn’t malicious, they can still be careless if they think it’s just a fad. We’re very selective in the restaurants in the area that we know and trust, but there is always that first time you try a restaurant that isn’t already on your list. There have been times I simply haven’t eaten the food because something about the food or the service set off warning bells. ( I don’t make a scene based on a gut feeling, but I don’t like that I have to worry about it.)

Fundamentally, the gluten free diet is emphatically not a fad; it’s a medical diet. Nobody would dismiss a diabetic diet as a fad even if, for some reason, it gained a faddish quality among some people who did not have diabetes.

Celiac disease is at the top of the list of medical conditions that are treated with a gluten free diet. Celiac disease remains widely misunderstood by the general population, even when they’ve heard of it. It’s not an allergy or food intolerance. Nor is it limited to GI symptoms.

Rather, celiac disease is an autoimmune disease like lupus, type 1 diabetes, and a number of other pretty serious diseases. When a person has an autoimmune disease, their body produces auto-antibodies that attack itself rather than an invading pathogen. Unlike all the rest of the autoimmune diseases, we actually know what triggers the autoimmune response for those of us with celiac disease — consuming gluten. In a way, I consider myself fortunate. At least I have a chronic, incurable disease that I can keep in complete remission simply by maintaining a strict medical diet. People who have lupus, for example, aren’t so fortunate. All they can really do is try to treat the symptoms and keep it under control, but they are never symptom-free. And none of the medication is free of side effects. And if the first medicine used becomes ineffective, the next one is actually a chemotherapy drug. Similarly, I’ve known a number of people with type 1 diabetes. They have to follow a fairly strict medical diet, watch their blood sugar, and give themselves insulin shots. And their disease is never in remission or fully controlled.

A lot of studies have been done over the past decade or so, including a controlled study here in the US that tested something like 13,000 people in the general population across the country. So we know the rate of celiac disease. In the US, roughly 1% of the population has active celiac disease. That’s roughly the same rate as type 1 diabetes, making those two diseases by far the most common autoimmune diseases. Unfortunately, nearly 90% of those with active celiac disease remain undiagnosed. Moreover, other studies have shown that the rate of celiac disease in the general population has been increasing for decades and is still increasing. (They tested blood samples going back to the 50s and discovered active celiac disease back then had about a quarter of the rate it currently does.)

And that’s because celiac disease can be largely asymptomatic for years as it creates long-term damage. Or its symptoms can seem unconnected to each other and and can range across all the bodily systems. Since even most doctors still associate it exclusively with GI symptoms, if someone doesn’t present with those symptoms, they never consider celiac disease. In reality, celiac disease has over 300 potential symptoms ranging from the classical GI symptoms to neurological to diseases related to nutritional deficiencies and many more. The list is mind-boggling. Over the long-term, it can trigger other autoimmune diseases. It can cause depression. It can trigger ADHD or make it worse. Active celiac disease can even lead to cancer.

The presenting symptom for me when I was finally diagnosed was iron deficient anemia. However, I was then discovered to have osteoporosis in my spine (now almost completely returned to normal). I discovered the “aches and pains” I thought were just part of growing older largely went away. They were apparently the result of systemic inflammation. I was suffering from depression, which is now completely gone. I had mild neuropathy and “brain fog” now also gone. I was an extremely advanced case when I was finally diagnosed and even after almost five years, my body is still healing.

Active celiac disease will kill you. (Studies have shown it significantly reduces longevity.) And it will do so slowly and with significant suffering.

There is a strong genetic component to celiac disease. If you don’t have certain genes, it’s extremely unlikely you’ll ever develop celiac. As a result, though, that means that family members, especially first degree relatives, of someone with celiac disease are much more likely to have or develop active celiac disease than the general population. So after I was diagnosed, I let all my family members know, including my older children. (Unfortunately, except for my older son, I don’t think any of them have actually gotten tested.) My two younger children were both still minors at the time, so we had them tested as a precaution. We were shocked to discover they both had full-blown celiac disease. They were completely asymptomatic. Fortunately, unlike me, we caught it early with them. So they’ll never suffer the extensive systemic damage I did.

However, the diet is extremely strict. I forget the exact threshold, but something like 20-50 milligrams of gluten in a day will trigger a full-blown autoimmune response. (Yes, they’ve studied that as well.) And even smaller levels can trigger some autoimmune reaction. As a result, we talk about gluten as “parts per million” in any given food we consume to avoid reaching the very small daily thresholds. 20 parts per million is the threshold used in the FDA regulations, if I recall correctly. (Mostly I think that’s because we don’t have a test that will reliably detect lower levels of gluten.) But that means that food that has been fried in the same oil as flour battered items or has otherwise been in contact with a gluten-containing food is typically not safe for us to eat.

Moreover, once triggered by exposure, the autoimmune response can take weeks to completely subside and for the disease to return to full remission. (Generally, the acute symptoms from an exposure, if any, subside in a matter of days, but the autoimmune response itself takes much more time.) I recall another case study of a nun who strictly adhered to the gluten free diet except for weekly communion with only a small piece of the eucharistic wafer. Her celiac disease remained fully active even from that small weekly exposure. (I will note that both the Catholic and Orthodox churches hold that communion with either bread or wine alone remains the fullness of communion and can commune those with celiac disease with wine only.)

The doctors who research celiac disease are trying to get it added to the regular screening process like diabetes and cholesterol. Given that around 3 million people in the US have active celiac disease and roughly 2.7 million of them remain undiagnosed and since the disease can activate at any age, that seems reasonable. It’s especially reasonable since it’s so hard to diagnose from the symptoms and can even be largely asymptomatic for years as it damages the body. Moreover, they now have a blood test that is highly accurate and specific, so it’s relatively easy to screen. But the medical community generally moves pretty slowly on such things. Hopefully we’ll get there.

I’ll put the soapbox away now. But please, even though there is presently a faddish quality to the gluten free diet, don’t dismiss it as simply another fad diet. It isn’t. It’s a life-saving necessity for those of us with celiac disease.

FrankenWheat

There are parts of this article that are over the top. Among other things, there isn’t generally gluten in vodka (distillation removes the heavy proteins) nor is there gluten in envelope adhesive. However much of it is quite true. The wheat we eat now bears little resemblance to the wheat we have eaten for most of our history — and even that wheat is a relatively recent introduction to the human diet.

I do want to note the distinction he makes in the article about modern wheat being more likely to trigger celiac disease. That does not mean older wheat is somehow safe for celiacs to eat. The autoimmune disease doesn’t work that way. Once triggered, any gliadin based gluten will trigger an autoimmune response. But we have so many more with celiac disease today because the disease is now triggered much more often than it was even as recently as the 1950s.

I also like the way he stresses the fact that gluten-free processed food is still bad for you. Do I indulge at times? Sure. And it shows in my weight gain over the past three years as I’ve come to terms with this disease and struggled to adapt to an entirely different way of eating. Too many people today seem to assume that simply removing gluten by replacing foods with gluten-free junk food is all you need to do. It isn’t.

My wife actually forwarded me the above article and even though she doesn’t have active celiac disease, she’s now considering going gluten-free herself. She already has auto-immune issues and, since her husband and two younger children do have active celiac disease, it’s not really a stretch for her. She would just have to stop eating gluten when she goes out to eat. Pretty much everything in our house and every meal is already gluten free.

Thoughts from anyone? Should those without a diagnosed problem with gluten but with other potentially related health issues consider going gluten free? Heck, should everyone start avoiding FrankenWheat?

Picky Eater?

I’m late writing about this, so it’s likely old news to at least some of the readers out there. But it’s been on my mind, so I’m going to write about it anyway. Kendall Egan’s post on Special Diet Backlash? pointed me to this New York Times article on The Picky Eater Who Came to Dinner.

Given that two of my kids and I have celiac disease, it’s worrisome when people start to think of “gluten free” as some sort of fad if it means they won’t take us seriously. We do appreciate it when restaurants take the time and care to provide safe food and make it easier to order. We tend to go to a relatively small list of places that have proven to us they are safe.

When we go to a party or other event by an organization, friends, or family we tend to bring food we know is safe, check in advance if safe options will be available (which usually requires a fairly extensive set of questions), or even eat beforehand and just have a beverage of some sort at the event. We try not to impose, but at the same time we have to know at all times exactly what we are eating before we eat it. We have no “tolerance” or room for error.

However, unlike someone with a severe food allergy (like a peanut allergy), we won’t immediately react nor will we tend to react in highly visible ways. Unlike an allergy, though, when an immune response is triggered, the antibodies and inflammation can linger for weeks from a single exposure. So we are particular vulnerable to those who think, for whatever reason, that it’s okay to lie to us or hide something from us. Fortunately, that’s not a common occurrence today, but if a backlash against those on a special diet grows, it could become more common.

And that worries me. All posts like the one in the Times tend to make a comment about celiac disease before proceeding on with their rant. But celiac disease is not only more common than many such writers seem to understand, it also doesn’t have any visible markers. There’s no way to look at someone with celiac disease and tell that they have it. It’s a largely invisible disease.

And that’s without even discussing the increasing numbers of people who are being medically diagnosed (not by WebMD) with non-celiac gluten intolerance or sensitivity. They may have more tolerance for exposure and cross-contamination than those of us with celiac disease and the consequences of exposure may not be as severe as the celiac autoimmune response, but they still have a real, if not thoroughly understood medical condition. They don’t deserve to be ridiculed or dismissed either.

My advice to those hosting dinners, parties, or events? Decide up front whether you care about the dietary restrictions, voluntary or otherwise, of those you are inviting before you invite them. And be clear about whether or not you are willing or interested in special diet requests or needs. If you aren’t, that’s fine. If if you just aren’t sure how to handle such needs, just be up front about it. If someone actually cares, we’re always prepared to discuss it. Perhaps we can cook and bring something safe so we can blend in to some extent. But if you find such things a bother or imposition don’t be surprised if we decide we would rather not attend.

Iron Cactus

My wife and I recently decided to try Iron Cactus on a night out. They have a gluten free menu and neither of us had ever been there. As the warning at the bottom of the menu notes, they do use common fryer oil, which means the chips are not actually gluten free and neither is anything else deep fried. I confirmed that it was common oil with our server. That’s a common pitfall, so I was prepared for it. (I will note it makes me appreciate Maudie’s even more. They have sealed bags of gluten free tortilla chips they bring to your table still in the bag.)

Even with that caveat, they have some intriguing options not found at the typical Mexican restaurant. I had their Abuelita’s Meatloaf and it was quite good. It’s probably not a place we’ll go frequently, but the food and experience were both good. And I didn’t seem to have any reactions, so as long as you make your selections carefully, it’s possible for someone with celiac disease to eat safely.

Green Mesquite BBQ

Our family has long been patrons of the Zilker Summer Musical. In the last nearly quarter century, we’ve only missed a couple. We always donate at the musical and sometimes donate in advance as well. We’re fortunate to live in a community that supports the arts and which provides free offerings. (My daughter and I also attend the free Shakespeare in the Park put on by Austin Shakespeare each year.)

This year was one of those years we chose to be “official” donors so we were invited to the catered outdoor donor dinner and special preview performance (also the final dress and technical rehearsal, but usually with no interruptions). The dinner was catered by Green Mesquite BBQ. I had never been there, so I contacted them by email to see if their food would be safe for my children and me. They responded very helpfully.

“All of our meat is gluten free along with with our barbecue sauce. Our rubs are made by a local spice vendor, Texas Spice, and they do not add msg or gluten in our spices. We don’t add gluten products to our beans or potato salad. Our buns are bread so they are not gluten free.”

We attended, had a wonderful night. The food was delicious and we had no reactions to it. Although we’re not among the group of celiacs who tend to have strong and aggressive acute symptoms to exposure, we do tend to notice it. (The acute symptoms are not the real problem. The autoimmune response and the often more “hidden” damage to the body is the major concern for us with celiac disease.)

Given that positive experience, we’re adding this restaurant to our “safe” list.

Celiac Update – Osteoporosis

After I was diagnosed with highly advanced stage celiac in April 2009, my gastroenterologist ordered a bone density scan. The results showed full blown osteoporosis (I believe around -2.4) in my spine. I was shocked. No middle-aged man ever thinks about osteoporosis. My doctor referred me to an endocrinologist. She decided to treat me with a regimen of maximum calcium supplements (600mg three times daily) and see if that in combination with strict adherence to a gluten free diet would suffice. She noted that none of the medicines for osteoporosis are tested on middle-aged men and there’s no clinical data of any significance. She didn’t want to make me a guinea pig and I wasn’t inclined to be one.

The following year, my bone density scan had improved to the osteopenia range (-1.9 or -1.8, I believe) so my instructions were to continue my treatment plan. Last year, there was no significant change, but since it didn’t get any worse, my doctor wanted to continue the regimen.

This year my numbers improved to -1.1 (anything under -1.0 is considered normal). It’s still osteopenia, but barely. My doctor wants to wait two years for my next bone density scan since at this point there’s unlikely to be significant change in a year. But it looks like I beat osteoporosis! That’s good news in my book.

Violet Crown Cinema

Violet Crown Cinema, in downtown Austin, is a place I would call another local gem. My wife and I don’t go downtown that often anymore, which is the only reason I can imagine it took us so long to discover it. (Violet Crown has been open for a bit more than a year now.) The cinema shows independent films in four small theaters with very comfortable seats. They are also built so there really are no bad seats in the house and are stadium style so you don’t have to worry about tall people in front of you. We saw Bernie to celebrate her birthday and had a fantastic time.

The cinema has a snack bar which includes an espresso bar, hummus, and vegetable snacks in addition to the traditional popcorn and soda. The theater also has a cafe, lounge, and bar. Arrive early, enjoy food and drinks. And take anything you want into the theater where the seats have small fold-out tables. I understand if you don’t have time to get your food before the movie starts, they will give you a pager so you can go get it when it’s ready. Unlike places like the Alamo, there is no food and drink service in the theater, but the way their theater is arranged, that’s not really an issue.

The menu is not large, but it clearly marks the gluten free options. There aren’t many options, but it’s a small menu anyway. Moreover, since nothing else is fried, the sweet potato chips and hand cut fries are gluten free! No cross-contamination concerns. I had the sweet potato chips and they were delicious.

My wife and I will definitely be returning in the future. If you live in the area and like independent films, then give Violet Crown Cinema a try. I highly recommend it.

Lab on a Chip

I ran across the following article, about an inexpensive and easy to use celiac disease test, and it’s description of a “lab on a chip” intriguing. My younger kids suffer no real acute physical symptoms from celiac. Before I was diagnosed, even though my villi were completely flattened, I had osteoporosis (though I didn’t know it), and a host of other issues, I didn’t have the severe gastrointestinal symptoms some celiac sufferers have. Even now, I’m not always certain if I’ve been exposed or not.

For people like us, any sort of test like this — especially one we could do at home — would be invaluable. And, as they mention in the article, it’s a technology that could be used for more than celiac disease.

Yes, there are potential ethical questions always surfacing from our research in biotech and genetics. But it also greatly enhances the quality of our lives and our ability to help those who suffer from disease. It’s impossible to have one without the other. All things considered, I’ll take the good even with the issues that it raises.

Even just three years ago when I was diagnosed, hardly anyone I knew seemed to know what celiac disease was. Now it receives more attention than I could have imagined. The world changes quickly sometimes.

The Psychological Side of Celiac

The latest episode of the Hold the Gluten Podcast includes an interview with Blair Raber, with the Celiac Disease Program at Children’s National Medical Center on their efforts to address the psychological impact of a celiac disease diagnosis.

Any diagnosis of a chronic disease carries a psychological toll, but since food is so deeply interwoven in our social interactions, a diagnosis of something like celiac disease can be particularly disruptive. I’m very much a “well, that’s the way things are, now I need to figure out how to deal with it” sort of person in most aspects of my life, but celiac disease was and to some extent still is a challenge for me. And it was even more of a blow when I discovered two of my children had essentially inherited celiac disease from me. (My other children don’t currently have active celiac disease, at least.) Yes, I know we don’t control our genetic makeup, but it’s still impossible to truly escape the sense that it’s my fault they have to deal with all the medical and social consequences of celiac disease.

My son seems to deal with it in some ways more like I do. The idea of going out to eat somewhere that requires a lot of discussion with the staff, preparation, and caution can seem exhausting. Like me, if he’s placed in that situation he’ll often just choose to get something to drink and wait until he’s home to eat. That’s a big part of the reason I tend to stick to restaurants that are tried and true and really prefer ones that make it relatively painless for their gluten free patrons.

My daughter, however, is much more assertive. She will quiz restaurant staff on how something was prepared. She’ll check and double-check to make sure it was prepared with all the necessary modifications. She’s always been one who, even from a very young age, would stick up for herself and argue her case with anyone. And those traits serve her well. Of course, she was angry when she was diagnosed and it did take her some time to deal with that aspect of it. (My son, on the other hand, more quickly focused on positive thinking and moving forward.) But I think she’s done a pretty amazing job of adapting. They both have.

I’m glad there is beginning to be an emphasis on working through the psychological toll a diagnosis of a chronic, incurable disease takes on any of us, even with the best attitude and support. I generally focus on the positive because I tend to pull myself toward the positive by speaking and writing about it instead of the negative, but it’s not easy and the road has often been bumpy. In my case, my body was so severely damaged by the time I was diagnosed that as I recover, there are more and more foods that, while not provoking an autoimmune reaction, are not things that I can readily eat without adverse reactions (to put it delicately). And sometimes as that list of restrictions has grown, my positive attitude has been in short supply.

For most of my life, even as a child, I was the person who would try any food, liked most of them, and had a cast-iron stomach. People would try to play jokes on me by doing things like coating a slice of pepperoni pizza with red pepper under the toppings. (I remember that one clearly at a youth camp I once attended.) The joke ended up being on them because I ate it and loved it. Fortunately, I can still handle peppers and coffee fine. But as the universe of things I can eat has gotten smaller and smaller, it’s hard not to feel like my body has betrayed me.

Sometimes I want to scream.

I do get over it and move on. If you are going to have a chronic disease of any sort, celiac disease is not a bad one to have. I have control over the disease myself. I don’t need medicine (beyond all the things for nutritional deficiencies I suffered). And if I strictly control my diet I will keep the disease completely at bay. Yes, sometimes it sucks, but as chronic, incurable diseases go, it could be a lot worse.

On the podcast, Maureen and Vanessa also discuss the recent dust-up with Domino’s Pizza and their “sort of gluten free” pizzas. The issue was not in the ingredients, but in the risk of cross-contamination. (For instance, if you cook a gluten free pizza, but then put it on the same surface for slicing that you do gluten-containing pizzas and slice it with the same utensils, the pizza has certainly been cross-contaminated and can no longer be considered “gluten free.”) I examined Domino’s FAQ on their gluten free pizza crust offering. For comparison, I’ll offer the similar FAQ page for Mr. Gatti’s, a large regional chain. Note the differences.

While there is always a risk of cross-contamination in any restaurant without dedicated gluten free facilities, there are a long list of actions Mr. Gatti’s took that Domino’s apparently did not. When you make a gluten free order at Mr. Gatti’s, your order is handled from start to finish by a “gluten free agent” who has successfully completed the company’s training on their gluten free preparation procedures and how to avoid cross-contamination. The gluten free pizzas are cooked in separate pans. They are sliced with separate utensils in a pizza box instead of on a common surface. So while they cannot guarantee there won’t be any cross-contamination, they are clear about the training, procedures, and actions they have in place to limit the possibility. There is nothing similar on the Domino’s FAQ. Indeed, they even list as a risk something as simple as an employee handling gluten-containing dough and then contaminating the other ingredients, something that should be easy to control with strict glove-changing procedures. (As an interesting aside, when my wife was growing up, her father  was friends with a long-time past owner of Mr. Gatti’s, so my wife had a lot of interaction with their family. Just a curious bit of trivia. They both have some stories to tell.)

Personally, if I’m going to have pizza, I prefer to either make my own or get it at one of the local places, like Promise Pizza, with very strict cross-contamination procedures, knowledgeable owners, and well-trained staff. But if I were going to risk it at a large chain (well, now that I can’t really eat dairy either, that’s extremely unlikely to ever happen), the clear winner from all the ones I’ve seen is Mr. Gatti’s. On the podcast, they mention the approach Chuck E. Cheese is taking, which is also a perfectly reasonable approach. They may have been ill-advised, but the approach Domino’s took was not a good one. It made it look like they were trying to tap into a “fad diet” more than trying to meet the needs of those of us with a medical requirement for a restrictive diet. That may not have been true. They may have had nothing but the best of intentions. But that’s the appearance it created.

Finally, if you listen to the end of the podcast, I’m the “Scott” Maureen mentions. Hold the Gluten was one of the online resources I discovered shortly after I was diagnosed more than three years ago. I’ve listened to most, if not all, of her podcasts. (I can’t remember how far I went back or if all her early ones were available, but I’ve certainly listened to every podcast since then.) Even when her podcasts were just Maureen talking into a microphone sharing her struggles and frustrations, they were still helpful to me. I didn’t necessarily struggle with the same things or have the same issues, but there’s something helpful in hearing from others. (And when I was diagnosed, I didn’t know anyone else with celiac disease.) It’s important to hear that you aren’t alone. Thanks Maureen!

Now that her daughter has been diagnosed, I find myself somewhat on the flip side of that equation. Maureen has been diagnosed with celiac disease about twice as long as I have, but I’ve been dealing with having two of my kids diagnosed for a couple of years now. They are both older than Maureen’s daughter, but there’s still some common ground and I try to offer what little I can when the opportunity presents itself. The struggles when you deal with a child diagnosed with this disease are somewhat different than your own personal struggles, especially when your child “got it” from you. So I was glad to hear my little practical advice helped. It’s not much, but the celiac community is only a community to the extent we are willing to try to help each other. And ultimately, we’re the only ones who really understand what it’s like — however much empathy other people might have.

KinniToos Chocolate Vanilla Sandwich Cookies

My son and daughter have both handled their celiac diagnosis really well. Obviously it’s not what any teenager wants to learn, and I still feel irrationally guilty for passing the genes for this disease on to them, but they’ve made the most of it and adapted well. Recently, when students were seeking choir officer positions at school, many of them brought the traditional food bribes for votes. My daughter noted somewhat ruefully that she couldn’t eat any of the cupcakes, cake balls, or cookies. But at least there was some gluten free candy, so she could have something.

One of my daughter’s favorite cookies before she was diagnosed was Oreos. It’s not something she ever ate frequently. But for picnics, especially at events like the Zilker Summer Musical and Shakespeare in the Park, at sleepovers, and at Girl Scout outings Oreos were a “go to” cookie. Unlike most of the other foods she enjoyed, that’s also not one either my wife or I had any idea how to recreate from scratch at all, much less using gluten free ingredients.

Fortunately, we discovered KinniToos! Frankly, though I’m not sure how good my memory of Oreos really is, these seem pretty much identical in texture and taste. More importantly, my daughter thinks they are as well. (And when she shares with her non-celiac friends, they love them too.) The cookies are, of course, significantly more expensive than Oreos, but well worth the price from my perspective. I don’t want my daughter to feel like this disease is depriving her of things she loves — at least to the extent that I can prevent it.

At any rate, we highly recommend them. KinniToos are fantastic!