News for Celiac Awareness Month

This is the month when celiac disease gets a lot of love. All of May is dedicated to celiac awareness in the United States, Canada, and Europe. The week of May 9th to the 15th is Coeliac Awareness Week in the UK. And May 16th is recognized as International Celiac Disease Awareness Day. Sadly, none of these occasions require gluten-free cakes to be delivered to celiacs, but maybe one day? In the meantime, please click the little ?? above — that helps the Gluten-Free Guidebook to stay out of overeager spam filters.

There’s lots of news to share this month, so let’s dive in! First, let me mention that the Gluten-Free Guidebook itself has a new look at its Substack home. Please check it out, and let me know what you think. Here’s some news from around the globe…

Read the full post on Substack

Rash Decisions

Before I was diagnosed with Celiac Disease in 2004, one of the symptoms that plagued me was an eczema-like rash that flared up on a regular basis. It was most common on my arms, legs, face, and neck, but it could show up anywhere, anytime. Doctors prescribed skin creams, but nothing took it away until I eliminated gluten from my diet.

I had a blissful respite for about a decade. Then, a couple of years ago, the rashes started coming back.

At first, I assumed I’d been accidentally glutened at a restaurant. But on those rare occasions when I have accidentally ingested gluten, the first symptom that popped up was ulcers inside my mouth, and that didn’t happen. Still, clearly I was ingesting something that was making me sick, and I took a closer look at my diet. Everything I ate was gluten-free, as far as I knew, but that didn’t guarantee safety. (Some readers will remember the Wellshire Farms debacle in 2008; in that case, the company sold products labelled “Gluten Free” that weren’t. It was horrible, particularly because several of these products, like the Wellshire Kids’ Dinosaur Shapes Chicken Bites, were marketed for children. To this day, I refuse to buy anything made by Wellshire Farms.)

I started playing detective, trying to identify the culprit. When I found the cause, it was entirely by accident: I tried an eye-makeup remover made by Rimmel, and my eyelids cracked open. The good news was that my reaction, and the rashes, had nothing to do with gluten. The bad news was, I’d developed a contact allergy to methylisothiazolinone, a chemical widely used in toiletries, household cleansers, and other sundry goods.

Methylisothiazolinone is used as a preservative and a biocide. It has the dubious distinction of being named the American Contact Dermatitis Society Contact Allergen of the Year for 2013. Here’s how another source describes methylisothiazolinone:

It is a cytotoxin that may affect different types of cells. Its use for a wide range of personal products for humans, such as cosmetics, lotions, moisturizers, sanitary wipes, shampoos, and sunscreens, more than doubled during the first decade of the twenty-first century and is proving to be a concern because of sensitization and allergic reactions as well as cell and nerve damage.

Search online for methylisothiazolinone — or its close relative methylchloroisothiazolinone — and you’ll find a lot of anecdotal accounts of its frightening effects. You’ll also find an increasing number of medical journals sounding the alarm, especially in Europe. In the US, the National Institutes of Health’s Library of Medicine has abstracts of these articles. Check out “Methylisothiazolinone Outbreak in the European Union” to see how ongoing exposure to the chemical is moving beyond eczema-like rashes and causing lichen planus-like or lymphomatoid reactions. Don’t be put off by the snoozy title of “Methylisothiazolinone in Selected Consumer Products in Belgium,” which shows that many companies are far exceeding the legally allowed concentrations of methylisothiazolinone in consumer products.

So, why talk about methylisothiazolinone on a blog devoted to living gluten-free? A couple of months ago, I got a message from a reader who was suffering from rashes, and she wanted to know if I had any advice. I told her about my experience with methylisothiazolinone and suggested that she stop using any product that contained it. This is no small thing to do: I found the chemical in Pantene shampoo and conditioner, Crabtree & Evelyn bath gel, Murad facial toner, and a host of other products running the gamut from inexpensive drugstore staples to expensive boutique brands. Methylisothiazolinone is everywhere. I just heard back from this reader, who told me that, by avoiding the chemical, her rashes had cleared up. That was when I decided I had to write this.

Get ready to hear more about methylisothiazolinone over the next few months. It’s already part of the basis for a class-action lawsuit against The Honest Company; details begin on page 16 of the filed complaint. (The Honest Company has previously responded to the Environmental Working Group’s criticism of its use of methylisothiazolinone on its blog.) The European Commission is currently reviewing a proposal to restrict the use of methylisothiazolinone, and to ban the chemical in any “leave-on” product, including wet wipes; the public consultation period is open until October 23, 2015. (Want to participate? Click here.) The UK’s BBC One Watchdog has covered methylisothiazolinone allergies — read this and this — and caused Johnson & Johnson to reformulate one problem product. (Vaseline, Brylcreem, Huggies, and Nivea also announced plans to reformulate… at least in the UK.) The New York Times has written about it. There’s a very helpful Facebook group, “Allergy to Isothiazolinone, Methylisothiazolinone and Benzisothiazolinone,” that has constantly updated information, but brace yourself for some frightening photos of victim’s reactions if you visit. In the meantime, you might want to check out your own medicine cabinet.

Breaking the Language Barrier

On the Mount of Olives

When I was first diagnosed with celiac disease in 2004, I felt like I’d never be able to travel again. Just communicating my dietary needs in English seemed daunting enough, so how was I going to manage it in a foreign tongue? Fortunately, I’ve had a lot of help. In the past decade, I’ve visited plenty of places where I didn’t speak the language — including Peru, Chile, Argentina, the Czech Republic, Hungary, Turkey, and Israel — and I’ve been able to arrange for gluten-free meals along the way. Eating at a restaurant is always an exercise in trust; for the gluten-intolerant, it feels especially risky. Here’s what’s worked for me:

  • Visit the Celiac Travel website, which provides an impressive selection of cards in many languages. The list is constantly growing, but currently features 54 languages, including Arabic, Basque, Greek, Hebrew, Hindi, Japanese, Italian, Malay, Portuguese, Russian, Urdu, and Vietnamese. There are several companies that charge money for celiac translation cards, but none of them are better than what Roger and Lyndsay offer on Celiac Travel. If you use their cards, they appreciate a donation, but it’s not required.
  • Check out the list of “Celiac Societies Around the World” compiled by Nancy Lapid on Often, these societies will have information about restaurants and shops that cater to celiacs. While you’re at it, Google “celiac” or “gluten free” and the names of the cities you’ll be visiting; often you’ll find local groups with plenty of information to share.
  • Ask for advice on the Gluten-Free Guidebook’s Facebook Group. You’ll probably find a fellow traveler who’s been to the place you’re planning to see; occasionally, you’ll connect with a local.
  • If possible, learn a few words or phrases in the local language before you go on your trip. Knowing how to say “Tengo la enfermedad celiaca; No puedo comer harina o trigo” (I have celiac disease; I can’t eat flour or wheat) made my travels to Peru and Chile easier. Still, I have to admit that I never managed this in Hungarian.

Does anyone have other ideas for breaking the language barrier? I’d love to hear your suggestions.

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In other news, my first stand-alone thriller, Blood Always Tells, will be published on April 15, 2014, by Tor/Forge. According to Library Journal, “You can’t help turning the pages in anticipation of yet another twist.” You can win an advance copy via GoodReads before February 15th. If you order the hardcover or eBook before the release date, you can win a prize. 

The Gluten-Free Guidebook Turns Five!

EVIL launch party March 5 2013

I’ve been so busy on my book tour for my new novel, Evil in All Its Disguises, that a certain significant date slipped right by me. March 15th, 2013, marked the fifth anniversary of the Gluten-Free Guidebook. Creating this site has introduced me to a lot of incredible people over the years. I know, from the messages I receive, that so many people have found the information helpful; a few have told me that the site gave them the confidence to travel again, when they believed a diagnosis of celiac disease meant they’d never eat out again. Working on this site has been a labor of love for me.

The site has also spawned a vibrant Facebook group, which I love because it helps readers share restaurant recommendations and travel tips. If you’re planning a trip and wondering what your gluten-free dining options are at your destination, it’s the perfect place to start.

To celebrate this site’s fifth anniversary, I’m hosting a contest. I want to hear about your favorite gluten-free places — restaurants, bakeries, shops, hotels, or destinations. Write a Reader Report about them, and you’ll be entered in a draw to win one of my three mystery novels (The Damage Done, The Next One to Fall, Evil in All Its Disguises). Examples of Reader Reports are here.

The fine print: By entering this contest, you automatically give me the right to publish your entry on the Gluten-Free Guidebook, and to edit it as necessary for clarity and length; however, I am under no obligation to publish it. Your entry must be your own original work and cannot infringe on anyone’s copyright. You hold the copyright to your own material and can publish it elsewhere, in print or online. Entrants need to send me their full names and their mailing addresses (the mailing address is only for the prize draw; the information will be kept strictly confidential).

The deadline for entries is May 31 July 15, 2013. Entries must be e-mailed to glutenfreeguidebook [at] gmail [dot] com; please put “Anniversary Contest” in the subject. This contest is open to readers around the world, except where prohibited by law.

Here’s to another year, and many more discoveries on the road!

When “Gluten Free” Means “Danger”

By now, you’ve probably heard that Domino’s rolled out a gluten-free pizza a couple of weeks ago. It was a clever marketing ploy, since May is Celiac Awareness Month, and the demand for gluten-free products is growing; the new pizza crust was covered by news organizations including ABC, CBS, NBC and USA Today. Unfortunately, Domino’s move was nothing but a cynical attempt to cash in on gluten-free consumers. Its “gluten free” pizza isn’t actually safe for celiacs or gluten-intolerant people.

If you want to read an account of the debacle, check out these articles from The Consumerist and Nation’s Restaurant News, and this particularly perceptive piece from Daily Finance. At the core of Domino’s problem is that, while they developed a pizza crust that is gluten-free, the company’s sketchy kitchen practices mean that cross-contamination with wheat is pretty much a given. As a result, Domino’s claims the pizza is for people with “mild gluten sensitivity.” Yes, you read that right. Even Daily Finance was stunned: “Seriously? Is this a tease? Why even offer gluten-free crusts without reorienting kitchens to cook them separately from crusts slathered in flour and wheat dough — exactly the ingredients that keep most celiac sufferers from even thinking about ordering a pizza? No wonder the Center for Celiac Research is recommending that those with gluten-related disorders avoid the new Domino’s crusts.”

This isn’t the first time a national chain has marketed a “gluten-free” product that was unsafe — remember California Pizza Kitchen? But to me, the most disheartening part of the Domino’s story is that its gluten-free pizza received a seal of approval from the National Foundation for Celiac Awareness. Specifically, Domino’s received something called an “Amber designation” from the NFCA. What’s an Amber designation? It’s a bizarre middle ground between Green (safe) and Red (unsafe) in the tiered credentialing system the NFCA launched in April 2012. Basically, it means that the NFCA was well aware that Domino’s “gluten-free” pizza wasn’t safe for celiacs, but the organization gave it a seal of approval anyway.

I’d be the first to say that the NFCA has done good work in the past. The organization has a terrific program to educate restaurant staffs about celiac-safe practices. But I will never again be able to look at anything that has received the NFCA’s seal of approval without suspicion. I trusted that an NFCA seal of approval meant a restaurant or product was safe for celiacs; I will never make that mistake again.

Thanks to a tremendous outcry from the celiac and gluten-free community (people like Shirley at GFE) — and a petition organized by the terrific people behind @1in133 — the NFCA has suspended use of its Amber Designation. In its public statement, the NFCA said: “Given the public response and recent developments in this field, NFCA is suspending the use of “Amber” designation to describe a restaurant or foodservices establishment. We will conduct a review to determine the most effective and clearest way to warn the community of the risk of cross-contamination and the use of the phrase ‘Gluten Free.'”

A big part of the problem is that, in the US, there is still no official designation of what gluten free means (the FDA is still working on that). The implications are frightening; to quote the American Celiac Disease Alliance: “Almost everyone with celiac disease or a related gluten-disorder knows that currently there are no gluten free labeling requirements in the United States, and that consumers are routinely misled by inappropriate labeling.”

It seems that Domino’s, and the NFCA, are determined to keep on misleading consumers. When I checked Domino’s updated FAQs about its “gluten-free” pizza after it lost its NFCA “Amber” designation, here’s what I found:

Q: What are the NFCA’s “Great Kitchen Standards” and how is Domino’s rated?

A: The NFCA supports Domino’s efforts to provide a Gluten Free Crust to a national audience and has given Domino’s a “Gluten Free Ingredients” rating. The NFCA granted Domino’s this rating because of our verified ingredients, consumer education approach and customer service training. This means the NFCA and Domino’s do not recommend this pizza for people with celiac disease. However, because the risk for gluten exposure is low, this product may be an option for those with mild gluten sensitivities. While the Gluten Free Crust contains no gluten ingredients, a risk of gluten exposure can occur due to the handcrafted nature of the pizza and the variety of procedures in the kitchen.

I searched the NFCA’s website to find out what a “Gluten Free Ingredients” rating is, and I couldn’t find any mention of it. However, I did find this NFCA statement about Domino’s:

The National Foundation for Celiac Awareness supports Domino’s efforts to meet the needs of the gluten-free community. However, we want to make sure all customers are fully informed about Domino’s practices and the potential risks of cross-contact.

Please be advised all of Domino’s menu items, including pizza made with Gluten Free Crust, are prepared in a common kitchen. While the Gluten Free Crust contains no gluten ingredients, there is a risk of gluten exposure. NFCA supports the availability of Gluten Free Crust at Domino’s, but CANNOT recommend the pizza for customers with celiac disease or any gluten-related disorder.

Working with NFCA, Domino’s recognizes its current operational model cannot – beyond all doubt – provide the environment needed to assure those with celiac disease that its pizzas are 100% gluten-free. Domino’s would rather be honest and transparent with what this product is and is not, than risk a consumer ordering this product under false pretenses.

“Honest and transparent” is not at all what I’d call this mess. Not by a long shot.

Allergic Girl: The Book!

One of the very best things about creating the Gluten-Free Guidebook is that the site has connected me to some wonderful people. A case in point: my friend Sloane Miller, otherwise known as Allergic Girl. She’s a tireless educator and advocate for people with food allergies, and a warm, enthusiastic person both online and in real life. She doesn’t have celiac disease, but she follows a gluten-free diet, so I’ve referred the gluten-intolerant as well as people with food allergies to her site many times. Now I’m referring them to her new book, too. Allergic Girl: Adventures in Living Well With Food Allergies has just been published by Wiley. Library Journal gave it a starred review, saying:

“The book is divided into three sections: an introduction to food allergies, how to cope with them, and how to find the right doctor; several chapters on relationships with self, family, friends, lovers, and food; and discussions of how to manage dining out and participating in social events and celebrations involving food. Throughout, Miller emphasizes building positive relationships, and she coaches readers to be assertive but also patient with others who may not know how to respond to someone with food allergies… VERDICT As the parent of a child with a severe food allergy, this reviewer found Sloane’s approach both positive and practical. Highly recommended for anyone with food allergies, as well as their families and friends.”

Check out Sloane’s blog, book trailer, and book tour. I interviewed Sloane a while back for an “On the Road With…” feature; a more recent piece about her can be found on CNN.

While on the subject of books, I should mention why I haven’t been blogging much lately. My debut novel, The Damage Done, was published by Tor/Forge in September, and I went on a book tour that took me to eight states and two countries. (I’m grateful for the wonderful reviews the book has received, and the continuing interest in it.) I also wrote a second mystery novel, The Next One to Fall, which is set in Peru and will be published by Tor/Forge in January 2012. Right now, I’m at work on a new novel.

I also want to mention that, next Tuesday, one of my favorite authors, Linda Fairstein, will release her 13th novel, Silent Mercy. I was lucky enough to get an advance copy, and I can promise you it’s excellent. Happy reading!

Gluten-Free Guidebook’s Reader Report Contest

One of my favorite things about writing the Gluten-Free Guidebook is hearing from readers. I love it when you share your thoughts and opinions with me (as you did, most recently, on the issue of the celiac pill that is currently in medical trials), and when you take the time to write about a restaurant that serves great gluten-free meals. A few readers have contributed complete Reader Reports, in some cases about a trip they’ve taken and in others about their hometown. Either way, the effort and information is very much appreciated — by me, and by many other people.

I’m launching the first-ever Gluten-Free Guidebook Reader Report Contest because I’d like to hear from more of you. The rules are simple: write a Reader Report about gluten-free restaurants and shops in the place where you live, or a place you’ve visited. Each report that you write must be at least 300 words, and each one you write will get you entered into a random draw for a guidebook giveaway: the winner will receive a copy of my Frommer’s Toronto 2010 and Frommer’s Canada. There’s no limit to the number of Reader Reports you can write: if you send one, you’ll be entered in the drawing once, if you send five reports you’ll be entered five times.

For examples of great Reader Reports that have run in the past, take a look at these examples: Buenos Aires, Amman, Hawaii, and Las Vegas. There’s a range of styles, and there’s no one right way to do it. Remember, any information you share is going to be valuable to other gluten-intolerant people.

By entering this contest, you automatically give me the right to publish your Reader Report on the Gluten-Free Guidebook, and to edit it as necessary for clarity and length; however, I am under no obligation to publish it. Your entry must be your own original work and cannot infringe on anyone’s copyright. You hold the copyright to your own material and can publish it elsewhere, in print or online. Entrants need to send me their full names and their mailing addresses (the mailing address is only for the prize draw; the information will be kept strictly confidential). Please let me know if you would like only your first name to be published with your Reader Report; if you do not specify this, your first and last name will be used.

The deadline for entries is June 7, June 30, 2010. Entries must be e-mailed to glutenfreeguidebook [at] gmail [dot] com; please put “Reader Report Contest” in the subject. This contest is open to readers around the world, except where prohibited by law. I look forward to reading your Reader Reports!

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Speaking of contests, voting is open for the Spinetingler Awards until April 30th. My short story “Insatiable” is a finalist for a Best Short Story Award. Please visit the site, look at the contenders, and vote for your favorite story using this online ballot.

More About That Celiac Pill

One of the most popular — and controversial — columns I’ve ever written on this site was just a few weeks ago: “Would You Pop a Pill to Eat Gluten Again?” The responses from readers were passionate and divided. To get a sense of this, take a look at the comments under that post. There were also many people who wrote to me directly to share their feelings on the matter. Here’s what some of them had to say:

“Going gluten-free has opened my heart and mind to a healthier lifestyle both in food and in exercise. I would not take a pill or a vaccine just to eat gluten again. I am healthy and happy, why mess with that?!”

“I would like to have the option to take a pill OCCASIONALLY but probably not on a regular basis, as I am quite pleased with my new diet and the many gluten-free products available.”

“I would NOT go off my GF diet and use a pill. The only exception might be when traveling to locations that are not familiar with this kind of restriction. The other exception might be a wedding or special event where having a piece of cake would be part of the celebration.”

“Since we dine out almost every weekend, I order GF foods (mostly broiled) as much as possible, but I am not always 100% sure it is GF, so it would be nice to have a pill to take for just in case purposes; otherwise, eating GF during the rest of the week is something I would continue.”

There was a response on the comment thread that I found very poignant:

“I’m actually shocked that I am the only [one] that responded saying that I would definitely take a pill to enjoy a meal and not have to ask a million questions about what is in it and how it was prepared. I’m in my late 20’s and having celiac has really taken a toll on my social life. I attend meetings and events almost every night for work and am not able to eat anything. Food is the center of our social get-togethers and it really sucks to ‘be different.’ Even when I do go out to dinner, while everyone else is enjoying warm French bread, I have to sit there and watch. When I go out with family and friends we can only honour where I can eat and I hate putting that burden on everyone else. Yes the diet can be a healthier choice but I would trade in the diet for a ‘normal’ diet that can still be healthy.”

That column was prompted by a story I was interviewed for in Allergic Living. The piece “The Future of Celiac Disease: Celiac’s Next Act,” written by Lisa Fitterman, has just been published in the magazine’s Spring 2010 issue. Unfortunately the story isn’t currently available online (though it may eventually be archived on the Allergic Living website). It’s a terrific, well-researched piece, and I’d encourage you to read it. I was already familiar with the research into the celiac vaccine in Australia and the celiac pill in Baltimore, but I had no idea that researchers at Leiden University in the Netherlands were also working on a pill. It feels like it’s just a matter of time until one is on the market.

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If you’re interested in my crime fiction, I have a couple of new short stories that have just been published. “Fetish” appears in Beat to a Pulp, and can be read online for free. “The Black Widow Club” is in the newly launched Needle: A Magazine of Noir, which is in print only, but can be ordered online.

Would You Pop a Pill to Eat Gluten Again?

A couple of weeks ago, I was interviewed for an article in Allergic Living magazine. The story will be published in the summer — and when it’s out, I’ll let you know — but some of the questions got me thinking. The reporter was well-educated about research into celiac disease and about the work that some pharmaceutical firms are doing to develop a pill that would allow a celiac to eat gluten again.

“How do you feel about that?” she asked me. I told her the truth: I find the research intriguing, but I’m not interested in taking a pill that would let me eat gluten.

She was surprised. She rephrased the question. I asked her if she was gluten-intolerant and she said that she wasn’t. I explained that many people have said to me, in the six years since I was diagnosed with celiac disease, how terrible it must be to be on a gluten-free diet. But none of those people were actually on a gluten-free diet themselves.

I actually love the gluten-free diet. I don’t cheat on it. I don’t go to dinner with gluten-eating friends and wish that I could eat what they’re eating. And I don’t miss wheat or the other things I can’t have (seriously, has anyone in the world ever missed eating rye?). It’s true that the gluten-free diet solved many of my health problems, but it did more for me than that. It forced me to reconsider everything I’d been putting in my mouth. Before my diagnosis, I never read a food label. Suddenly I had to, and I discovered that there were a lot of things in processed foods that I didn’t want to put in my body. That’s not to say that I don’t have my indulgences. My favorite food groups are cheese, chocolate, and wine. But most of my meals are made from healthful, unprocessed ingredients.

It’s great news that pharmaceutical firms are taking notice of celiac disease, and there are some clinical trials — like the possible celiac vaccine — that I’m watching with great interest. While I’m certainly in favor of pharmaceutical firms doing research into a pill that would let celiacs eat gluten, I’m not interested in taking it myself. Part of that is simple suspicion: I like to know what the long-term effects of taking any medication are. But part is an unwillingness to go back to the days when I had medications for migraines, mouth ulcers, and other health problems. I love that the gluten-free diet cleared up these problems, and I’m not interested in relying on a prescription medication if I don’t have to.

I’m curious how other gluten-intolerant people feel about this. Are you eagerly awaiting results from the clinical trials? Or would you stick with a gluten-free diet, even if there were a prescription that would let you eat wheat?

New Websites for the Gluten-Free

If you’re a regular reader of this site, you’ve already heard about some of the websites I love. When I was a newly diagnosed celiac in 2004, I spent a lot of time searching for information online… and when I started traveling again (also in 2004, but much later that year), the Internet was my starting point. Some of my longtime favorites include Celiac Handbook, which has an amazing collection of resources from around the world, Celiac Travel, which provides, for free, celiac translation cards in 47 languages, and Clan Thompson’s Celiac Site, which offers a free online newsletter. More recently, I’ve become a fan of Gluten Free Maps, which pinpoints locations of restaurants that cater to gluten-intolerant diners.

There are a couple of very new sites that I’ve already bookmarked, and I want to share them with you. The first is Social Simmer, which started up late last year. It’s an intriguing mix of resources for people with gluten intolerance and/or food allergies and a social networking hub. Social Simmer links to related articles and blogs, and it also offers original reviews of restaurants. I’m just learning about the social networking side of the site, but I’m already hooked. Since the site lets you search for restaurants by different criteria, it’s a very useful addition to the scene, particularly for people who have a food allergy in addition to gluten intolerance.

The other site that’s caught my interest is Nanette’s Dish. This new site is devoted to vegetarian cooking and dining, and already contains recipes (like this Red Quinoa Tabouli Salad) and restaurant notes. Nanette’s Dish takes a special interest in gluten-free living — the author’s husband has celiac disease — but not everything on the site is for the gluten-intolerant. Speaking as a celiac who’s married to a vegetarian, I’m already sure I’ll be visiting this site often.

Are there other new online resources you would recommend? Please let me know.