The Wild West Days of Celiac

cowboy hat

Most of you who’ve heard me speak, or taken a class with me, or use the recipes and advice in my cookbooks, my foodphilosopher.com website, or here on this blog, know that I find it difficult to say much of anything in just a few words. Perhaps that is the philosopher in me, but I love the luxury of more leisurely writing. I like to linger over my thoughts and I like having the time to play with my words and rework them with time to spare. I’m a terrible blogger and even worse at Twitter because I find that I have little interest or natural ability in trying to stay in the public eye on the Internet everyday. But I do have a really useful natural inclination to save up all my thoughts and to think about what I’m thinking about; it is then that my best recipes and my most worthwhile thoughts emerge. It takes time. And for the last several years I’ve been watching and reading and thinking about what is going on in the gluten-free world. Last year when my brain got really full of all these gluten-free ponderings, I started to put them down on paper as a chapter for my next book. But timing is everything.

After speaking at a regional gluten-free “expo” this past weekend, I feel provoked to speak out. Food picture lovers and people who need to capture the details in 140 characters or less should leave this page now. My writing here is for readers who are hungry for something to think about.

The following passage is copyrighted ©2013 by Annalise Roberts. All rights reserved, including the right to reproduce this passage or portions thereof in any form, including any electronic information storage or retrieval system, except for brief quotations or limited reproduction in a review or feature.

cowboyhatand spatula

 

 The Wild West Days of Celiac

First there were only the pioneers, the ones who bravely traveled into the new uncharted territory of the “wild” west. The pioneers had made the decision to move on and change their world in order to improve their lives. There were few road maps, almost no one to help them on their journey, and very little communication along the way with others who had gone before. In the celiac world, these were the (unlucky) few diagnosed a decade or more ago.

Then very slowly, settlers started down the lightly traveled paths of the pioneers. There were no established towns or cities for them to come to because the pioneer folk who were living in the new uncharted territories lived pretty much by themselves in very small communities. In the celiac world, I was a settler at the time of my diagnosis. No one I knew had ever heard of celiac disease. Doctors, except for a select few, could never be counted on to diagnose their patients correctly or give accurate advice about how to deal with it; nutritionists and dieticians often provided outdated and incorrect food advice (for example, I was incorrectly told not to eat anything made with distilled vinegar); and the leaders of the two largest national support group organizations couldn’t agree on diet protocols. The relatively small number of celiac settlers who existed at this time had to find their own way by searching for the few accurate resources that were available.

Then more people came and started to settle down. There were more day-to-day basics, but few conveniences and no luxuries. The growing, but still small communities, tried to develop a sense of order, ward off unscrupulous gunslingers, and help the new comers. But there was still no one was in charge, no spokesman, and there were few rules or standards. There was also an overall jostling for position among the folks who were there as people started to stake out their claims for leadership, land and commerce. In the celiac world, there was still no main clearing house for guidance and advice in the way the American Heart Association, the American Cancer Society, the National Breast Cancer Foundation, or the Lupus Foundation of America are often the first place people go to supplement the information they get from their doctors. In place of gunfights, there were petty rivalries between the national support groups organizations, newly formed independent support groups, and hospital research centers as they competed for the attention and money of people who had been diagnosed. Moreover, the growing number of celiac websites often provided conflicting information from both self-proclaimed experts and the participants in community chat rooms, as patients, who had been left with few authoritative resources to turn to, tried to help themselves.

Here Comes Everybody

Then, that famous golden nugget was discovered and the Gold Rush began as people answered the famous call to “Go West Young Man”. Individuals, families and entrepreneurs poured in, coming from all directions. In many ways, that is the same explosion of awareness, excitement, opportunity, and involvement that we are witnessing now in the celiac world. As more people have been diagnosed with celiac, and medical researchers finally came to admit that gluten-intolerance does in fact exist outside of celiac disease (even though the patient community had been saying this for over eight years), the market has exploded for all things gluten-free: restaurants, large corporations, small and mid-sized food companies, grocery stores, farm markets and cooking schools all jumped into the pot. To flame the fire, this rush to embrace “gluten-free” coincided with the catapultic rise of blogging and social media. These forces have resulted in a huge throng of people shouting for attention and aggressively try to fill the void left painfully empty by culinary professionals and the medical community.

The Consequences

The explosion has led to a better understanding of the spectrum of gluten sensitivity and to more people being correctly diagnosed with celiac and non-celiac gluten intolerance. This is a good thing. All of a sudden, everyone seems to know someone who has celiac or is gluten-sensitive. There is a also a lot more talk about the hundreds of symptoms, most of which are not related to the digestive tract, and the fact that you don’t have to actually have celiac in order to have symptoms. Moreover, the lines of delineation between those with celiac (one percent of the population with zero tolerance for gluten consumption) and those with non-celiac gluten intolerance have become more clearly defined, and as a result, it is easier for people to understand what they need to do to get and stay healthy.

The explosion has also helped, directly and tangentially, to educate doctors and other medical practitioners not to ignore the symptoms. Incredibly, I still meet people every week who complain that it took them seven to ten years to be correctly diagnosed. But now I’m beginning to have hope that people will have the knowledge and confidence to switch to more informed doctors when there own doctor ignores their pleas.

Secondly, the explosion has led to more and better gluten-free prepared food, baking flour and baking mixes in grocery and specialty stores. We’ve also seen more food choice in restaurants, and more cookbooks. This is particularly good for those who are newly diagnosed because it makes it easier for them to embrace their diagnosis. But in reality, it is good for anyone who wants to eat gluten-free food.

There are, however, things that concern me. The explosion has done nothing to deflate the number of competing national support groups and websites all clamoring for attention, support and limited dollars. Instead of one coherent message going out to the media, to food companies, to restaurants, doctors, medical personnel, insurance companies, and Congress, the groups are each sending out their own messages and often diluting the overall impact. There also appears to be a low level of acrimony between many of those working at the national level and there are turf wars over the work to be done. It has led to a duplication of effort and a squandering of resources. How much better it would be if the groups divided up the work and then specialized in an area for which they are best suited?

And my final concern: as the number of cookbooks and food magazines dealing with gluten-sensitivity increases, there are a seemingly endless number of flour mixes. There is, in fact, a general lawlessness among food writers and those who develop recipes. There are no rules or standards, not for home cooks, or for those in business. Although there is no real gluten-free cup-for-cup replacement for wheat flour, not having a universally accepted gluten-free equivalent of an all-purpose-flour isn’t necessarily a good thing. It makes it harder for new comers to develop their technique, become competent and to move up the learning curve. It means that everyone who starts down the path basically has to start from scratch in evaluating which road map to use. It also means the gluten-intolerant are more apt to bite into something dry or dense or grainy or gummy or rubbery or weird tasting or flavorless- or several of the above all at the same time.

So Where Do We Go From Here?

When it comes to baking, it’s probably safe to say that most people who give up gluten simply want to be able to recreate the baked goods they’ve always enjoyed (hopefully in moderation): the pizza, cookies, cake and crusty, chewy breads they left behind. So I’m not convinced it’s worth creating a whole new category of baked goods using gluten-free flours, although some other enterprising baker could possibly do just that. I’m also not convinced about the wisdom of what I call free-style baking, as in just use these guidelines for flour exchange or these ratios and throw in any flour you want or any flour you have in your in your cabinet; this leads to inconsistent, and often compromised results. And while the surprise aspect of never having the same thing twice might please some, the huge disparity in the quality of gluten-free fresh bakery products, shelf-stable bakery products, baking mixes, and recipes really means that there is much work to be done in just being able to dependably reproduce the basics.

The result? One of my goals is to try tame a bit of the wild west aspect of the gluten-free baking community. I want to create a starting place for gluten-free bakers, help them build a solid foundation for tackling recipes, help them to move up the gluten-free baking learning curve so that they can successfully innovate and be creative, and finally, to help them develop consistency. Consistency is a mark of being great in anything, from throwing a curveball, to dancing the tango, to writing good, clean software code. The difference between a great baker and everyone else is having the skill set to produce top quality baked goods over and over on purpose. And while I can’t promise to make you a great baker, I can promise to give you the tool kit to start you on your way.

Finally, my primary goal is and always has been is to provide you with a collection of dependable gluten-free recipes for baked goods that mimic high quality wheat versions. I want to be the cookbook writer you turn to when your baked goods have to be good, when you don’t want to take a chance. I want to be the cookbook writer whose recipes and advice you’ll come to know and trust and return to time again.

The above passage is copyrighted ©2013 by Annalise Roberts . All rights reserved, including the right to reproduce this passage or portions thereof in any form, including any electronic information storage or retrieval system, except for brief quotations or limited reproduction in a review or feature.

32 Responses to The Wild West Days of Celiac

  1. Nell Worthington says:

    You ARE the cookbook writer I turn to when my baked goods have to be good…and I can’t thank you enough for that! YOU GO GIRL!

  2. Minda Sevey says:

    Wow, well said. Fortunately you were recommended to me right off the bat for my celiac family, and 2 years later, you’re still the only gluten-free cookbook I have because the advice, instructions, and results have been so fantastic I haven’t felt the need to keep searching. I pick up the odd recipe here and there, of course, but yours are the ones I depend on. Thank you!

  3. Charles Luce says:

    Thank you Analise for these well-thought-out and on-the-mark comments. Your work has been instrumental to my success and continues to inspire and inform. Your books ARE the go-to source for anyone who wants to be a great home baker. Please keep it up – and know that you are appreciated.

  4. Linda P. says:

    What a wonderfully written article. You are dead on with what is going on in the world of gluten free.

  5. Sondra Gingery says:

    I have your Baking Classics and Bread Machine books, and they are absolutely my go-to books for baking. I really appreciate this article, and agree with you on the status of the GF community and the need for some cohesiveness. One of the most discouraging things I initially encountered was that each cookbook required a multitude of special mixes,(of course, each claiming to be the only successful method and mix)and recipes absolutely were not interchangeable from gf-flour mix to mix. The conflicting medical info was, and still is overwhelming to dig through to try to find what is truly known about these issues. So, thank you for your efforts to make this a workable, successful life change. For me, it did make a difference.

  6. Shawn McBride says:

    Don’t look now, but I think you have achieved exactly what you set out to do—at least for this family. I was never much of a baker (except for French breads a la Julia Child. But I learned from you, beginning with the feature about your GF baking in Gourmet. Then I bought your book. By now I have produced dozens of excellent baked goods and served them to unsuspecting neighbors, relatives and friends—all to rave reviews. And I’ve achieved this by starting with your recipe for something similar, then varying the key flavor ingredients.

    One comment (digression?) on the current state of gluten-free affairs: Since gluten-free diets have become so popular—even faddish—the whole issue of cross-contamination has been largely over-looked by many restaurants and producers of mass foods. It is quite easy now to order a “gluten-free” menu item and spend the next week being sick. Why? Because the restaurant is so eager to attract the gluten-free diner that it offers dishes that may not contain a glutenous grain, but is indeed full of flour molecules from nearby dishes. Most people do not notice or complain, because they don’t have celiac; they merely believe a gluten-free is somehow more healthful and more conducive to weight control. What seemed such a blessing two years ago is now exhibiting a down side. It is apparent that the term “gluten-free” in restaurants cannot be trusted as safely as it could be a few years ago.

    …Just sayin’

    • Annalise says:

      So good to hear from you Shawn! And thank you for letting me know how successful you have been using the foundation I attempted to lay out for baking with gluten-free flours.

      And I agree with your concerns about eating safely in restaurants. I think that if the celiac groups, industry groups, and individual consultants who are all giving advice to restaurants would (1) agree to the same protocals and standards for kitchen service, and (2) decide on just one “rating system” and symbol for GF on menus, that the world would be a safer place for all of us who need to eat gluten-free food. There are no FREE, readily agreed upon guidelines for restaurants to turn to and too many people/organizations giving different advice and trying to sell themselves as experts.

  7. anne says:

    I love the way you linked the wild west with the celiac community. It is a great example. I am not much of a baker, but I always have your mix on hand when I want to make a good dessert. I am waiting for the GF-friendly restaurant furor to die down so we can get back to helping our local restaurants understand what GF really means. Someone above mentioned the issues with cross contamination. The level of understanding is all over the map. So, I will stick to the few tried, true and trusted chefs I know I can depend on until this gold rush is over.

    Keep up your good work!

    • Annalise says:

      Hi Anne!
      Thank you for your comment about sticking to chefs you can trust. I’m also even more careful now about going out. And I do my research ahead of time.There are more than a few places trying to serve GF food – mostly with good intentions – but without understanding what they really need to do.
      At least the folks staying at your Chicken Paradise Bed and Breakfast know they will be able to eat your delicious meals safely.

  8. Courtney Duffy says:

    I love your books. Of all the gf cookbooks I have, yours is the one I turn to time and time again. I appreciate your dedication to turning out quality products! Keep up the good work!

  9. Allison says:

    Annalise, I wish I were standing next to you right now! I would love to give you a big hug. The passion and conviction you communicated in this post is one that truly moves me. I know I have commented on some of your other posts, but your cookbook Gluten-Free Baking Classics was the absolute first and only GF cookbook that helped me make sense out of the huge number of cooking options available. Trying to raise 5 children, live in a foreign country in which I was homesick for my favorite American Southern dishes and finding I could no longer eat wheat was so hard for me to navigate. I struggled for 2 years before I found your book.

    I am also moved by your post because I was contemplating some recent advice about “How to write the perfect – short and sweet — blog post” and I was getting very discouraged because this advice, while it might be a great marketing strategy, is not where my heart is right now in my writing. Your post basically restored my sanity in my temptation to follow everything others are doing in the blogging world. As I tell my teenagers, everyone else is NOT doing it. :-) And that is okay.

    And then your lovely post showed up in my inbox. I have been struggling again, both in staying completely gluten free and in figuring out were I want to go with my own writing. You have been and will continue to be a guiding light in the huge volume of conflicting and confusing information out there. And while I do stick with your baking advice religiously — because it works — I have found that you have also given me a sense of confidence to use your foundation for my own family recipes.

    I know how difficult it is to keep at it in both writing and cooking. But I am so thankful you are committed to this mission. There is a huge need for it and you are helping others figure out our own paths in this journey as we follow along.

    So here’s my hug, and again, thank you for just being you.
    Allison

    • Annalise says:

      Oh my, what a touching letter Allison. It is good to hear that you are doing well on the other side of the globe while trying to cook and bake gluten-free. And I’m happy to know that my work is serving as a solid foundation for you. I warmly receive your hug and I’m hugging you back.

  10. Suzanne Banfield says:

    Hi Annalise,
    I think you’ve already reached your goal of providing the recipes to use when a gf dish has to be perfect. But if you’d like to keep exceeding the goal, another cookbook would be very welcome!
    Suzanne

  11. Erin Smith says:

    What an excellent post, Annalise. So much of what you wrote, I have been thinking for years. As someone living with celiac disease for more than 30 years, I have seen this development of the Celiac “Wild West” as you so accurately reported on. I applaud you for being one of the pioneers!

    “Instead of one coherent message going out to the media, to food companies, to restaurants, doctors, medical personnel, insurance companies, and Congress, the groups are each sending out their own messages and often diluting the overall impact. There also appears to be a low level of acrimony between many of those working at the national level and there are turf wars over the work to be done. It has led to a duplication of effort and a squandering of resources.”

    This part of your post really struck a chord with me. Sadly, I see this every single day and it has only gotten worse in the almost seven years I have been blogging. We have national organizations and research centers that work in competition with each other rather than work together for the greater good of their celiac patients. We have gluten-free bloggers that publicly belittle one another via social media. We have gluten-free vendors that tell you what allergies you do and do not have to their ingredients. (Yes, this has happened to me more than once!) None of this helps our cause. It confuses those who are newly diagnosed and it hurts those of us that work hard to help our community, not compete within our community.

    Thank you again for your thoughtful post and for all you do for the gluten-free community.

    Erin Smith
    Gluten-Free Fun
    NYC Celiac Disease Meetup Group

    • Annalise says:

      I’ve known you for several years now, Erin, and have always thought that you were one of the shining lights in our community. It means a lot to me to have your support and to know that we are both working towards the same goal. Now, if we could only round-up the rest of them to see that we all need to present a united front. You are correct about the bickering and jostling for position that goes on. Makes me sad about all the wasted energy.

      Anyway, thank you for your very good thoughts.

  12. Marianne Konopack says:

    I wholeheartedly agree with the previous comments! You are my guru, my guide to g-f, and I will never use anyone else’s flour blend or cookbook! I have convinced everyone in my local support group to use your cookbook. Over 11 years ago when I was diagnosed there was almost no advice, no help, and, as you say, incorrect info.

    Today I made two gingerbread cakes (with lemon frosting)which book club and family will enjoy as well as another batch of peach muffins. The diversity of your recipes makes it easy to always have what is craved. I substituted fresh (from a jar) ginger for the powdered in each recipe with excellent results.

    There’s a cookbook out titled something like Gluten-free and non-dairy desserts which tempted me but only for a second since all your recipes have been just fine with dairy substitutes.

    Another cookbook?! That’ll be fantastic.

    • Annalise says:

      Thank you! I’m working on the recipes for that book. And I’ve appreciated how you’ve been able to share your dairy free tweaks of my recipes over the years; I’ve kept your input, along with that of many others who write me, so I can offer dairy free suggestions with a better understanding of what has worked best for others.

      It’s good to hear how much baking you’ve are doing. I have to say, you got me in the mood for gingerbread! I’ll to make one this week now that the first waves of fall air are settling in.

  13. Well, I fed my husband the vanilla cupcakes made from the flour you gave us at the Expo, and he is a huge fan!! For him it’s about texture, too, equally in taste and these hit the spot right on. Combined with a little bit of a butter-powdered sugar vanilla bean frosting, it was too sweet for me. I might try to reduce the sugar by just a few tablespoons and see what happens.

    Count me as another who has spent a decade sick, but not classically “celiac sick” (the general belief I’ve seen is that you can’t have celiac and be fat…) because I lacked some of the GI issues. But I was “diagnosed” with fibromyalgia and despite never responding to treatments and asking for them to go searching for something else, no doctor ever thought about gluten. I didn’t get tested, I happened upon the GF diet by chance. But I had a severe reaction to gluten after just 2 weeks gluten-free (feels like the flu, for me).

    One question I have, and I think you’re the person to ask: As with anything that achieves “fad diet” status, there is a bubble and it does eventually burst. The onslaught of gluten-free products on the market (and GOOD ones, at that) has happened so rapidly. Do you think that this is a bubble that will burst? Will people who are gluten-free as a diet eventually move on to another fad diet, like what happened with Atkins and so many before, and then the demand is down for GF products, so the supply will go down? Or is this fad diet combined with the Wheat Belly book merely a catalyst for millions of people finally figuring out that they truly are gluten-intolerant or Celiac?

    Also in regards to the cross contamination issue, they’re not careful because there are so many people who have “cut back” due to the “fad” status, and they don’t get sick-sick and too often will order a gluten-free meal but then have the gluten-filled dessert. The kitchen gets mad, and eventually gets jaded, and assumes everybody asking will never know the difference. This leads to things happening like that Chef who ranted publicly on Facebook about how he routinely serves people regular pasta when they ask for gluten-free, they never complain and so they all must be pain-in-the-butt fakes and not worth his time.

    • Annalise says:

      hi!
      Glad the cupcake recipe was a hit! Now you can work your way through a couple more and develop a repertoire of gluten-free baked goods you can enjoy making and eating.

      To answer your question- gluten-free might be considered a fad-diet by those who don’t see (or are unable to understand) the big picture, but it isn’t going away. It is in fact becoming bigger. Fad-diets come and go, but eating a gluten-free diet is very different because gluten really does cause inflammation in millions of people, most of whom don’t even know it yet. The Wheat Belly books are helping to get the word out, which is a good thing because it hadn’t been well publicized before that.

      One of the bad things that has happened because there is no one clearing house for all the gluten-free information is the lack of common protocols for restaurants. Perhaps restaurant staff could ask patrons if they are gluten-free because of celiac or for less serious concerns in order to better judge how to treat their food? I’m not sure, but someone, somewhere needs to figure it out and get everyone on the same page.

      Thank you for your thoughts!!

      very best,
      Annalise

  14. Rosemarie Hanssen says:

    I’m so glad I ran across your book early on! It is getting shabbly with extra pages stuffed in that I have printed off your website! I really should replace it! I would like to see the flour mix more readily available, but stores have SO many options to choose from! Thank you!

    • Annalise says:

      You are very welcome! It’s good to hear you are happily enjoying the recipes in my book and website. And I also wish the flour mix I prefer was available everywhere. Too bad the people who make the buying decisions for the stores don’t understand what really is in all those little bags they line on in their gluten-free sections.

  15. Gina says:

    You’re working on another cookbook? That makes my day!

    I first bought GF Baking Classics on a lark when my mom was diagnosed with celiac about 6 years ago. She gave it such rave reviews that it was the first book I bought when my daughter wasdiagnosed last year. In fact, my copy is already so dog-eared that I’ve thought about buying a back-up copy — I can’t imagine being without your book and I’ve often wanted to thank you. So…thank you for your voice and your recipes, and for letting us know there’s a new cookbook on the way!

    • Annalise says:

      Thank you so much for your hearty endorsement of my efforts! It really is good to know that all the time and care I put into my recipes and my writing have made a difference to you and your family. Makes it all worthwhile!

  16. Anthony Acker says:

    I just thought I would throw out there the information coming out about natural yeast which has been used to raise wheat products for thousands of years is needed to help our body break gluten down and that the center of bread when done in a wood fired oven does not exceed 175 degrees leaving the yeast alive to help our bodies break gluten down and also does so in the natural sourdough process. As a longtime baker I sort of laugh at the more protein theories in wheat since gluten % is determined in every flour for along time (how could we bake with these 300% more protein flours?) or else our recipes would be pretty bad. Since now we use baking powder, soda and instant yeast we are not getting this bacteria. Similar to natural sauerkraut helping to break down meat, kimchee helping to break down food, kefir for heavy dairy and yogurt (naturally fermented of course) and fermenting tofu, etc etc These all help with foods we are not naturally suppose to eat or did help in those societies that we have now moved away from … it is after all all about the bacteria …

    • Annalise says:

      hi!
      Bacteria is completely different than yeast. But we do need it!
      And yes, yeast contains enzymes that break can down gluten. And yes, there have been several studies of sourdough breads treated with special enzymes that several gluten sensitive people in the studies were able to digest without a huge amount of distress. But it is not recommended for people like me who have celiac.

      Keep baking!

      Very best,
      Annalise

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