Guest Post - Shirley Braden

Don't these Coconut Meringues look delicious? Well, they're naturally gluten free and dairy free. Today, we are lucky enough to have a Guest Post written by Shirley Braden, owner and writer of the blog/website "gfe--gluten free easily."

I've recently become a huge fan of her blog. While I haven't met Shirley in person, from her blog posts, emails, and comments, I sense real warmth and caring. She's an awesome cook and shares her knowledge about eating gluten free. Shirley is also Leader of King George Celiac and Gluten Intolerance Group, King George, Virginia.

Below is her post and a wonderful recipe. Oh and I first found Shirley from her comments on Dept. of Nance. So thanks to Nance for leading me to her. And a huge thank you to Shirley for taking the time to join us here today! I really appreciate it! Oh and one small disclaimer. To my knowledge, Shirley is not a medical doctor and nothing in her post should be construed as medical advice. Please consult your family doctor if you have any medical questions.
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May is National Celiac Awareness Month. Or, is it? Most organizations that are associated with celiac/gluten intolerance do, in fact, conduct this observance in May. However, to date, no national month has been formally established and some associated organizations and even individual states, have adopted other months for this observance. So, as it stands now, there’s confusion. Confusion also extends to current testing and diagnosis of celiac. (Note: While health issues caused by gluten extend beyond celiac, such as non-celiac gluten intolerance and non-celiac gluten sensitivity, the focus of this article will be celiac.)

In simple terms, celiac is a genetic autoimmune disease caused by a reaction to gluten. Gluten is the protein found in wheat, rye, barley, and usually oats (via cross contamination). Celiac is the most common and most undiagnosed autoimmune disease in the United States. A landmark study, from 2001 through 2003, led by Dr. Alessio Fasano (Director of the University of Maryland Center for Celiac Research), established the prevalence rate of celiac in the U.S. as 1 in 133. The 1 in 133 prevalence rate equates to at least 3 million people in the U.S. with celiac.

While this number is clearly huge, it’s still hard to get a feel for how common the disease really is. Therefore, I appreciate the data points that the University of Chicago Celiac Disease Center (hereafter, referred to as UCCDC) provides. (Please view Celiac Disease Facts and Figures--a PDF file , that is also present on the sidebar under gfe’s favorite resources.) Again, celiac affects at least 3 million. In comparison, epilepsy affects 2.7 million, rheumatoid arthritis affects 2.1 million, Parkinson’s disease affects 1 million, Crohn’s disease affects 500,000, and multiple sclerosis affects 400,000. The UCCDC states that it would take 936 cruise ships to carry everyone with celiac or 4,400 Boeing 747 airplanes. Wow---that’s quite a visual, huh? Furthermore, the number of people with celiac is about equal to the population of Nevada. Significantly more individuals have celiac than the number of people who live in such states as Delaware, Hawaii, Maine, New Mexico, New Hampshire, or Vermont (all of which have populations less than 2,200,000).

Again, three million people have celiac. But, here’s the kicker … today, 6 years after Dr. Fasano published his findings on the prevalence of celiac, 97% of individuals with celiac remain undiagnosed or misdiagnosed with other illnesses. Yes, you read that information correctly. Only 3% of those with celiac have been diagnosed to date. The reasons are varied and numerous, some of which I’ll share here.

Per the UCCDC, physicians were taught during medical school that celiac disease was so rare that they would never encounter a patient with celiac in their entire career. Even today, the education on celiac disease in medical school may consist of a single 30-minute lecture during four years of classes. Furthermore, medical textbooks still contain outdated information. For example, while celiac used to be called “the wasting disease” and the literal picture of celiac was an individual who was extremely underweight with a malnourished appearance, the reality is that less than 5% of those with celiac “present” that way today. Many individuals who have celiac are, in fact, overweight or obese. Others may be of average weight.

In fact, symptoms of celiac are widely varied and may change over time. Dr. Fasano has called celiac a “clinical chameleon.” Numerous sources cite hundreds of symptoms related to celiac. The National Foundation for Celiac Awareness states that there are more than 300 symptoms associated with celiac. No two individuals will have exactly the same symptoms and no two authoritative resources will list the same symptoms. One person may have one symptom; another might have 12 symptoms, and those symptoms could change over the years---some going away with time only to be replaced by new symptoms. All of those symptoms could be attributed to different medical conditions by one’s doctor. To further complicate the face of celiac, about 40% will exhibit no symptoms. However, it is likely that these individuals with “silent” celiac could develop a major illness later in life (e.g., intestinal lymphoma, another autoimmune disease). Although celiac was thought to be solely a digestive disease for many years, recent research has shown serious, negative impacts to almost all of the human body. Please take a moment to review 20+ Reasons You Should Be Tested for Gluten Issues to see if you (or others you know) have these symptoms.

The only acceptable treatment today for celiac disease is a gluten-free diet, which means there is no pharmaceutical tie-in. Because doctors see many patients in their typical day and bear increasing paperwork responsibilities, the reality is that many of them get their day-to-day education from pharmaceutical representatives. Because no drugs are approved for the prevention or treatment of celiac at this time, celiac is neither on the radar of the pharmaceutical reps, nor on that of the doctors’. And, for very much the same reason, it’s not even on our, the patients’ radar---how many of us get our education on illnesses and treatment through pharmaceutical ads on television today?

Furthermore, the “gold standard” for celiac testing and diagnosis is positive blood testing followed by an endoscopic biopsy. However, current testing methods are not highly accurate. Some folks who test negative on the blood test actually test positive via the biopsy. A study by Dr. Peter H.R. Green (Director of Columbia University’s Center on Celiac Research), et al, showed the number of false negatives via blood testing to be about 30%. However, biopsies are typically not performed when a patient has a negative blood test. In fact, the UCCDC states that one fourth of patients with a positive blood test were not biopsied because either their doctor refused to perform the procedure or their insurance company would not cover it. In addition, Dr. Green (in Celiac Disease, A Hidden Epidemic, co-authored with Rory Jones), states that for those with dermatitis herpetiformis (DH), the skin manifestation of celiac, about 30% will not test positive for celiac through blood testing because they do not have the intestinal damage that others with celiac have. The gold standard for a diagnosis of DH is made through a skin biopsy. However, these biopsies continue to be performed incorrectly by dermatologists. (I can personally attest to this occurrence, because my own son was subjected to a DH biopsy performed on the skin eruption versus the adjacent area as required.)

On the flip side, many folks who test positive on the blood test will not test positive on the biopsy. In a presentation by Dr. Fasano (which I attended a few years ago), he indicated that a large number (about 40% if I remember correctly) of biopsies were taken and/or interpreted incorrectly. The scope, itself, used for the endoscopy also has physical limitations. Some folks are reporting celiac diagnosis via pill cam today, which basically goes where a scope can not.

Dr. Green has stated that individuals can have celiac disease for years before it can be revealed by current testing. He has also stated that once there is a pharmaceutical buy-in (e.g., pending FDA approval of a drug(s) to prevent celiac or allow affected individuals to safely eat gluten), he expects the pharmaceutical companies to invest in medial research to improve celiac testing. The reason, to me, is clear. These companies will want as many lifelong customers for their medications as possible. My expectation is that not only will the accuracy of celiac testing be greatly improved as a result, but the scope of what constitutes celiac is also likely to be broadened. In fact, I expect the outcome will be that both non-celiac gluten intolerance and non-celiac gluten sensitivity will finally be recognized as valid medical conditions by all in the medical profession.

The pharmaceutical tie-in is likely to occur in the fairly near future as there are currently several drugs associated with celiac in the research and testing phases. One is a vaccine being developed in Australia. The most publicized drug for those with celiac is being developed by Alba Therapeutics (of which Dr. Fasano is a co-founder) to allow individuals to safely eat gluten. The Alba Therapeutic drug, now designated as AT-1001, is on FDA’s “Fast Track” program. Personally, I do not plan to ingest any drug that is approved for the treatment of gluten-related issues. In my opinion, the gluten-free diet is the best treatment because it is without side effects or risk factors---something that no drug is ever proclaimed to be. I live a fabulous life and feel great gluten free, so I see no reason to change. The easiest, healthiest, and least expensive way to eat gluten free is to focus on “real” foods (meat, seafood, fruit, vegetables, and dairy) and throw in some gluten-free mainstream processed foods and a few gluten-free specialty foods. I call this approach gluten free easily (gfe)---no drugs required.

My belief, and one that is shared by others, is that many folks are going gluten free on their own because they can’t get a diagnosis of celiac due to many of the circumstances I’ve cited above. Once one is eating gluten free, it is highly unlikely that a celiac diagnosis can be obtained from the “gold standard” testing. The antibodies measured in blood testing immediately start decreasing and the villi of the small intestine start healing. The lack of a celiac diagnosis can lead to dismissal of a patient’s symptoms, misdiagnoses, and many, many years of ill health. There is much discussion and controversy on whether individuals without a celiac diagnosis should follow a gluten-free diet, but again, the focus of this article is celiac. (For the record, I advocate celiac testing, but if one can’t get a definitive diagnosis and sees their health improve by eating gluten free, then to me the answer is to continue to eat gluten free.)

Those of us who are close to the cause of celiac are committed to increasing the diagnosis rates by educating medical professionals and individuals through awareness events (e.g., fundraiser walks), conferences, support groups, blogs, and articles. Also, please urge your legislators to support the National Celiac Awareness bill currently before Congress (re-introduced by Rep. Nita Lowey of New York) by going to the American Celiac Disease Alliance site and clicking on the blue “write” button. This bill will ensure that May is established as the National Celiac Awareness Month and promote celiac awareness. Finally, please educate yourself to see if you might be the one in 133 by reviewing the data presented in this article (and via links) and spread the word to others by reading/sharing celiac education sites and gluten-free blogs. Be thoughtful towards gluten-free friends, by purposely choosing to dine with them in restaurants that have gluten-free menus (or can easily prepare safe gluten-free meals) or by training yourself and serving them naturally gluten-free meals when you invite them for dinner.

Here’s a treat that both you and any of your guests can enjoy … sort of bite-sized equivalents of coconut pie!

Shirley Braden's Coconut Meringues (naturally gluten free and dairy free)Makes about 20 cookies.
1 and 1/2 cups sweetened shredded coconut
2 egg whites
1/4 tsp vanilla extract
dash of salt
2/3 cup granulated sugar

Beat egg whites and dash of salt until soft peaks form. Gradually add in sugar while beating until peaks are stiff and glossy. Fold in coconut and vanilla. Drop by rounded teaspoon onto greased baking sheet.

Bake at 325 degrees about 18 - 20 minutes until set and very slightly browned. Center will still be soft. (If cookies harden while removing and are difficult to remove, just pop back in the oven for a few seconds and try again.)

Thanks so much to Anali for giving me the opportunity to address this very important topic!

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