In the Blink of a Celiac Click

Add $45 million to the lengthening list of big numbers associated with celiac disease. That’s the amount the family of a grateful patient from Indiana is donating to the University of Maryland Center for Celiac Research for the study of celiac disease and other autoimmune disorders such as multiple sclerosis and Type 1 diabetes. Alessio Fasano, MD, professor and director of the Center for Celiac Research, will be the first director of the new research enterprise.

I am astounded by the amount of the donation but not that this family has chosen Dr. Fasano to be the recipient of their generosity. He certainly deserves it.

I met Dr. Fasano nearly 20 years ago at a medical meeting shortly after I had been diagnosed with celiac disease. He was new to this country and not as fluent in English as he wanted or needed to be. His language frustration was palpable, but it didn’t last for long. While plenty of funny constructions still seep into his heavily accented English, language is absolutely no barrier in his life.

I like to say that Dr. Fasano landed on US soil, held up a celiac disease flag, and has not put it down since them. There has been success after success and we have him to thank for many of them. But it seems he’s just getting started. He is indefatigable, brilliant and an awful lot of fun to be around. My favorite Alessio slip was this comment referring to the speed with which one gets answers on the web: “It happened in the blink of a click,”

It’s easy to get lost in the challenges of leading a gluten-free life and to forget the damage autoimmune disease brings to the human race. Dr. Fasano once said, “If I had to have to have an autoimmune disease, I would want it to be celiac disease.” I couldn’t agree more. Diabetes, for example, is one of the leading causes of illness and death not only in this country but around the world. It is a constant hassle and those who cope with diabetes cannot let their guard down for one minute. I actually take some pride in thinking that study of “my” disease might bring some help to those who are challenged with diabetes.

Multiple sclerosis patients deal with many physical challenges and often with a shortened life. This simple explanation from the Mayo Clinic says it all:

“Multiple sclerosis (MS) is a potentially debilitating disease in which your body’s immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Ultimately, this may result in deterioration of the nerves themselves, a process that’s not reversible.”

I grew up in the 50s and was one of the original ardent fans of the Mickey Mouse Club. Annette Funicello was perhaps the most outstanding of the Mousekateers on the show and went on to star in several teen-oriented flicks. She was the one who usually got the guy, who was usually played by Frankie Avalon, one of my teen heartthrobs. To say I was jealous would be an understatement.

Funicello was diagnosed with multiple sclerosis in her forties. One of the sadder aspects of MS is that it tends to strike when people are relatively young. I’ve seen her on television where she sometimes appears as MS spokesperson and, like Michael J. Fox does with Parkinson’s Disease, she does not hide her symptoms. That takes courage.

My point is that other autoimmune disease, like diabetes and MS, seem to have a much more profound effect on our ability to live a happy, healthy life than does celiac disease. It might even be safe to say that CD might not receive the research attention it does now were it not for these connections.

But all this is not meant to debate which is the worst autoimmune disease on the planet. It would be great to get rid of all of them. The $45 million that the Center for Celiac Research will receive will be put to good, targeted use and those of us with celiac disease will likely be prime beneficiaries. Please join me in congratulating Dr. Fasano and in hoping this money gives him to opportunity to do great things for this planet. And, of course, it wouldn’t hurt if your congratulations come attached to a monetary donation to the CFCR. Here is a link to the website. In the blink of a click, you can contribute to what is certainly a noble effort.

Blood Types and Celiac Disease

Many years ago, when I was wandering around from doctor to doctor trying to figure out what was wrong with me, I happened to visit one of the Dr. D’Adamos (there is more than one Dr. D’Adamo pushing the blood type theories) at the suggestion of my then yoga instructor, who I liked a lot. That’s probably why I followed up on her suggestion. She seemed to know a lot about health and a lot of doctors didn’t seem to know anything at all about my health in general and my many physical complaints in particular. Plus, his office was not very far from my home.

The Dr. D’Adamo I saw said I had Type O blood and therefore I should eat meat. I was getting desperate, so I did begin to eat a lot of meat. At that point, I was avoiding a lot of food items thinking they made me ill, so the meat I ate was probably plain and therefore gluten free.

But I didn’t get any better because what I really had was celiac disease. Dr. D’Adamo did not advance my health one bit. In fact, he set me back while I experimented with the idea that eating meat would make me better.

The blood type theory arises every few years or so but to be honest, I don’t think it ever pans out in any helpful way. I vaguely remember a quote we had in one issue when a reader wrote in asking about the Blood Type theories. The doctor said (and I am paraphrasing from memory), if that were true, meaning blood type can guide treatment, then wouldn’t we all be much healthier than we are today?

I have been diagnosed with celiac disease for 20 years. I will agree that there are still, in 2010, medical doctors who don’t know squat about celiac disease. But I do know that theories I might term “outré” can delay a celiac disease diagnosis.

Certainly Dr. D’Adamo did me no good and some harm while I toyed with his theories. So I take issue with the idea that knowing your blood type will help you manage your gluten-free life. Frankly, I don’t think it will do you any good at all.

101 Suggestions – All Gluten Free or Easy to Make Gluten Free

I try to keep my excitement at all the new developments in the gluten-free world well controlled, otherwise I would be way too excited to get any real work done. But I do want to tell you about this. I picked up the dining section of Wednesday’s NY Times to see a special from Mark Bittman, cookbook author and television chef, called “101 Reasons to Light the Grill.” He does 101 “somethings” from time to time and I love them. They’re always full of exciting ideas that are doable and often gluten free.

In this case, if you substitute gluten-free flour, bread and soy sauce (all easy substitutions) for the few times these items appeared, you’ll get all the way to his 78 th suggestion before you find gluten in the form of miso. According to Amy Ratner, our ingredient expert, miso, which is made from beans and grain, comes in gluten free and gluten-containing versions. Sometimes the name tells you the ingredients. Mugi miso always contains barley and tsubi miso always contains wheat. But brown rice miso is one example that would be gluten free. As always, read the label. According to Bittman, you can substitute hoisin sauce, but that is unlikely to be gluten free. Amy suggests mixing equal parts ketchup and molasses as a substitute

Bittman specifically mentions a flour tortilla (#87) but it would be easy to substitute corn. And there is also an odd mention of pita as a bread substitute, grilling shortbread (possibly available in a gluten-free version) as well as pound cake and angel food cake (both are available in a gluten-free version) and a rather standard suggestion for grilled s’mores which does call for wheat-containing graham crackers, but there are a few gluten-free substitutes. That means for the most part you have 101 reasons for lighting the grill, all of which you can try — which should keep you busy for the summer, never mind this holiday weekend.

I was a bit taken aback by his direction to simmer octopus tentacles until tender, cool, then grill and “cut into attractive little rounds.” I find it very difficult to imagine octopus tentacles even eaten never mind cut into “attractive little rounds,” but this might appeal to some of you and be my guest! I’ll stick to the tried and true.

And maybe these suggestions, which are stunning in terms of their simplicity: “# 61. Odd but good: Strawberries and cherry tomatoes, finished with basil-laced balsamic vinegar.” or
“# 72. Char iceberg wedges and cherry tomatoes (skewer these first). Top with blue cheese dressing.” (Yes, blue cheese is gluten free but be sure to read the label if you use a prepared dressing.)

You’ll find all 101 suggestions at Enjoy as many as you’d like – and have a great holiday weekend!

Last Word on Vinegar: It’s Safe

vinegarWhen I was diagnosed with celiac disease nearly 20 years ago, vinegar was a big issue.

Although information was scarce, reputable sources, primarily the national support groups, said distilled vinegar could contain gluten. If the national support groups said it, then doctors, dietitians, reporters and everyone else picked it up as gospel truth.

Worrying about vinegar complicates the gluten-free diet considerably because vinegar is in a lot of foods. Salad dressings took the brunt of the fear and many of those diagnosed with celiac disease carried packets of “safe” salad dressing around in their pockets or purses, just in case.

A few years after I was diagnosed, I launched Gluten-Free Living as a newsletter and gradually gained a reputation for publishing reliable information. Readers asked us to use our journalism skills to look into the vinegar question. I resisted. It was a powder keg of an issue that I was reluctant to face.

But the requests kept coming, wore down my resistance, and, in late 1999, I decided to take the plunge and begin an investigation of the question, “Does vinegar contain gluten?”

Five minutes after I started, I realized that the question should not have been asked in the first place. Consider this:

Most distilled white vinegar is made from corn, a safe ingredient.

The single word “vinegar” on a food label indicates apple cider vinegar.

Distillation, one of the oldest scientific processes on earth, successfully removes gluten from the final product.

The only place in the world where vinegar was questioned was the US.

Knowing the hold fear of vinegar had on those who follow a gluten-free diet, I continued my investigation. I spoke with scientists, all of whom said distillation was a reliable process. Donald Kasarda, a respected American grain scientist, who provided scientific- and research-based guidance to American celiacs for many years, said, “There is no scientific evidence for gluten peptides in alcohol or vinegar that I am aware of. I have never encountered a single chemist who thinks there are gluten peptides in distilled alcohol from wheat grain. I have not personally researched this matter because it is such an unlikely possibility, and to prove the absence of gluten peptides that might be present in minute amounts is likely to be a major, costly undertaking and not at all easy.”

Lingering concern about vinegar seemed to grow out of fear that large-scale distillation might not be as precise as small laboratory distillation, so gluten peptides might sneak through the distillation into the distillate used to make vinegar.

Carrying that fear to a logical conclusion is not possible and suggests we need to be concerned about a lot of things we take for granted. It’s a bit like questioning whether an entire cup of water in a single teapot put on the stove to boil does in fact boil or does some minuscule portion of water not reach the boiling point.
Here is what I wrote nine years ago in the article that resulted from all my investigating:

“Of course things go wrong in the real world. But in this case, what is being distilled is most likely not wheat and whatever the original material is, by the time it’s fermented (the first step in distillation) it’s alcohol, not the original material. Although a small percentage of the original material could remain in the alcohol, in the unlikely event that the starting material was wheat, scientists say any gluten peptides that survived fermentation would not survive distillation. Furthermore, they indicate that should something go wrong during distillation, even the wrongest wrong would still produce a product that is safe for celiacs.”

Despite the impossibility, groups of people, to this day, continue to say they “react” to distilled vinegar and conclude it must contain gluten. Never mind that reactions are an imprecise way of determining whether something contains gluten. Never mind that it’s hard to understand how they know the reaction comes from vinegar since they are not consuming straight vinegar, but a product that contains vinegar and other things. Never mind that if we avoided all the foods that give some celiacs a reaction, we would never eat anything. Those who think they react to distilled white vinegar can choose to avoid it, but the problem does not stem from any gluten content.

As it happens, fear of vinegar persisted despite the existence of pertinent research conducted in the late 1980s by J.A. Campbell, PhD, then chairman of the Nutrition Advisory Board for the Canadian Celiac Association. Campbell was interested in determining the effectiveness of distillation in eliminating residual solids from alcoholic beverages. Whatever he found would be even more true for vinegar since vinegar would use a smaller amount of distillate.

Campbell did find a tiny residue but concluded: “To expose a celiac patient to this level of gliadin would require the consumption of at least 20 liters (21.2 quarts) potable spirits a day. The patient would undoubtedly be more at risk from alcohol than from gluten toxicity. When distilled grain alcohol is used in the production of white vinegar, the dilution factor is still greater and the possible concentration of gluten-like substances even less.”

Our original article on vinegar concluded: “Since there seems to be no firm basis for avoiding vinegar, it would be best for all celiacs if the controversy about this product was laid to rest. Then we can get on to more important things and help celiacs feel more confident about their diet and their health.”

Nine years ago

The original article was published nine years ago. In my naïveté, I imagined that news about the safety of distilled vinegar would hit the celiac community and cause people across the country to cheer. No more fear of vinegar.

But, alas, that didn’t happen. The national support groups ignored the article, which was well-circulated. One year after Gluten-Free Living published the vinegar article, the American Dietetic Association, which had previously said distilled vinegar was not safe for those who followed a diet should stick to Balsamic, apple cider and wine vinegars.

Part of the reason fear of vinegar persists is the Internet. Information is posted and stays there, right or wrong, year after year. That means you don’t have to search very hard to f ind someone who will tell you distilled vinegar is not safe for those who follow a gluten-free diet.

But the persistence of fear of vinegar is more than that. Misinformation about vinegar is like the Energizer bunny. It keeps going and going and going. While the national support groups clearly work for the good of those who follow a gluten-free diet, getting out reliable information about the safety of distilled vinegar has not been a priority. Why doctors and dietitians got on the “vinegar is not safe” bandwagon given their science background eludes me. Dietitians have mended their ways but you will still read ingredient misinformation from the medical community.

This is definitely my last word on vinegar, which is safe except for malt vinegar. We stand by what we publish.

Ann Whelan is founder and editor/publisher of Gluten-Free Living.