Tag Archives: Celiac



Here’s a write up about just how under-diagnosed Celiac disease is. Most of you reading this know it already, but if you have friends or family with poor health or symptoms that resemble Celiac, have them get tested!


Via Philly Health Day:

THURSDAY, Aug. 2 (HealthDay News) — New research suggests that 1.4 million Americans have celiac disease but don’t realize it, while 1.6 million people are on gluten-free diets — a treatment for celiac disease — even though they might not need it.

The findings, which estimate that 1.8 million Americans have celiac disease — an autoimmune condition — suggest that a whopping 78 percent of sufferers don’t realize they have the condition.

“This provides proof that the disease is common in the United States,” said study co-author Dr. Joseph Murray, a gastroenterologist at the Mayo Clinic, in a clinic news release. “If you detect one person for every five or six [who have it], we aren’t doing a very good job detecting celiac disease.”

People with celiac disease have trouble digesting wheat, rye and barley. A gluten-free diet can help, but about 80 percent of people on such a diet haven’t been diagnosed with celiac disease.

“There are a lot of people on a gluten-free diet, and it’s not clear what the medical need for that is,” Murray said. “It is important if someone thinks they have celiac disease that they be tested first before they go on the diet.”

The researchers came to their conclusions by examining blood-test results and the findings of a national survey.

Celiac disease appears to be especially common in white people.

“Virtually all the individuals we found were non-Hispanic Caucasians,” said study co-author Dr. Alberto Rubio-Tapia, a Mayo Clinic gastroenterologist, in the news release. But, he said, the results are head-scratching because research in Mexico has suggested celiac disease is common there.

The research was funded in part by the U.S. National Institutes of Health and the U.S. Centers for Disease Control and Prevention.

The study appears July 31 in the American Journal of Gastroenterology.

More information:

For more about celiac disease, try the U.S. National Library of Medicine.


Going For It: World’s Largest Gluten Free Cake

World's Biggest Gluten Free Cake, at a massive 16 layers tall.

As a kid I used to be drawn to the ‘Guinness Book of World Records‘ books like a fly to a lightbulb.  Seeing glossy photos of biggest, oldest, oddest was addictive. I’m glad to say I outgrew that phase, but I’m never one to pass up a good record if I see it.

And John Forberger is making that record, with the world’s largest gluten-free cake. Diagnosed as someone with extreme gluten intolerance, he works as a manager at Oxford Communications.  His cake is a collaboration with author Jules Shepard, and follows up on their website 1in133.org, a nonprofit that is working to push the FDA into compliance with the Food Allergen Labeling and Consumer Protection Act.  The website’s name comes from the Celiac Disease Foundation statistic that 1 in every 133 people has the disease.

Via Rutger’s University:

John Forberger is all about getting the message across.  He majored in film studies while at Rutgers, which he says taught him to think “about the bigger picture at all times.”

For Forberger, part of that big picture extended beyond his clients at work and into his life.

Forberger has what is diagnosed as “an extreme gluten intolerance,” where ingesting gluten, a protein found in wheat, barley, and rye, triggers chronic pancreatitis. It’s so severe that gluten reactions have sent Forberger to the hospital more than a dozen times.

This intolerance brought Forberger, who is also a triathlete, closer to the celiac disease community. For the 18 million Americans who suffer from celiac, gluten will trigger the person’s immune system to attack itself, specifically the villi of the small intestine. Villi are how your body absorbs food, and if destroyed by a gluten-triggered response, can prevent the body from getting crucial nutrients.

This can then lead to a host of problems: in the short term, abdominal pain, lactose intolerance,nosebleeds, hair loss, ulcers, even seizures and, in children, delayed growth and delayed puberty; in the long term, autoimmune disease, bone disorders like osteoporosis, intestinal cancer, anemia, infertility and liver disease. There is no cure.

Forberger and Shepard

Credit: Charles Votak | John Forberger and Jules Shepard launched 1in133 to advocate for those with celiac disease and gluten sensitivity.

Making gluten intolerance even more difficult to manage, it isn’t easy for those with celiac or gluten sensitivity to know if the protein is in their foods. There isn’t exactly a “gluten” space listed on the side of the box, and, right now, no standards for what can and cannot be labeled “gluten-free.”

In 2007, the Food Allergen Labeling and Consumer Protection Act ordered the FDA to finalize standards for gluten-free labeling. FDA officals were supposed to get their recommendations back to Congress in 2008.

As of 2011, they hadn’t done so.

“Although there are many trustworthy manufacturers providing delicious gluten-free options, the industry is a self-regulating one . . . anyone can slap the words ‘gluten-free’ on a product and charge a premium,” Forberger says.

Forberger connected with Jules Shepard, an author and celiac-patient expert, on Twitter. After one phone call in which Forberger dared her to make the world’s largest gluten-free cookie, they decided to form 1in133, a nonprofit that aims to push the FDA to comply with the Food Allergen Labeling and Consumer Protection Act. The group’s name comes from the statistic from the Celiac Disease Foundation that 1 in every 133 people has the disease.

Forberger and Shepard connected with the American Celiac Disease Alliance and created a drive to send 5,000 letters to the FDA to standardize gluten-free labeling. They also started an online petition signed by more than 10,000 people with the same message.

And then the icing on the cake – literally (and gluten-free). In May,  Forberger and Shepard  launched the Gluten Free Food Labeling Summitt in Washington DC. The event included a representative of the FDA and Congresswoman Nita Lowey, who sponsored the original Food Allergen Labeling and Consumer Protection Act, as well as the world’s largest gluten-free cake, all nine layers of it.

The summit and letter writing campaign worked. In August of this year, the FDA announced that it would once again invite comments from the public on gluten-free labeling with the goal of creating a uniform and enforceable definition by next summer or fall.

“Purchasing gluten-free food for many people is a medical necessity, and until there’s a cure for celiac disease, eating foods free of gluten is the only treatment,”  says Forberger, who graduated from Rutgers-Camden in 2002. He credits his college experience for helping him hone his organizational and communication skills.  “I met so many people of different backgrounds, which equipped me early on in my career to rightly communicate with anyone from anywhere..”

Over 600 pounds of frosting were used in the cake.

Teamwork for the giant cake.

Nearly finished with the enormous cake.

For more information on 1in133, visit www.1in133.org. You can also find out how to submit comments on what should be required for a “gluten-free” label here.

Why is Celiac Disease on the Rise?

Via Yahoo Health:

Nearly five times as many Americans have celiac disease today than in the 1950s, a recent study of 9,133 young adults at Warren Air Force Base found. Another recent report found that the rates of celiac disease have doubled every 15 years since 1974. The debilitating digestive disease is now estimated to afflict about 1 in 100 Americans. Why is exposure to gluten–a protein in found in barley, wheat, rye, and possibly oats, as well as other everyday products, including some brands of lipstick, vitamins and lip balms—making more people sick than ever before?

To find out more about celiac disease and the health effects of gluten-free diets, I talked to Christina Tennyson, MD of the Celiac Disease Center at Columbia University in New York City.

Eating gluten-free requires planning your meals: Tips for Stress-Free Cooking.

What is celiac disease? A debilitating digestive disorder, celiac disease is a chronic autoimmune disorder triggered by gluten. When people with the disease eat foods that contain gluten, a damaging reaction occurs in the lining of the small intestines, blocking its ability to absorb certain nutrients. This can lead to vitamin deficiencies and malnutrition, even if the person is eating a seemingly healthy diet.

What are the symptoms? One reason why this autoimmune disease often goes undiagnosed for as long as 10 years is that symptoms can vary from person to person. Among the more common warning signs of celiac disease are abdominal pain, bloating, gassiness, diarrhea, constipation, lactose intolerance, nausea and fatigue.

How serious is it? Because celiac disease robs the body of vital nutrients, people who have it are at increased risk for anemia and osteoporosis. People who have celiac disease and don’t eat a gluten-free diet also face a higher threat of bowel cancer and intestinal lymphoma. The Air Force Base study found that during 45 years of follow-up, those with undiagnosed celiac disease were four times more likely to die.

What causes it? Although the cause isn’t fully understood, two genes are known to play a role, says Dr. Tennyson.

Why are rates rising? One theory is that today’s grain-based foods contain more gluten than they did in the past. Another is that kids are exposed to gluten at an earlier age, contributing to increased risk. A frequently proposed explanation is the “hygiene hypothesis,” the theory that we are too clean for our own good, resulting in weaker immune systems because we’re not exposed to as many diseases.

Does a gluten-free diet help people lose weight? Many gluten-free foods are actually higher in calories than their gluten-containing counterparts and therefore lead to weight gain, reports Dr. Tennyson. “One of the pitfalls is that these foods are often highly processed and high in fat. Some ingredients that are used are low in fiber, such as white rice flour, tapioca and corn starch, causing constipation.” To avoid these problems, people with celiac disease should work with a nutritionist, she advises.

Don’t be fooled by fad diets. 23 Diets Reviewed: Which one is right for you?

Does a gluten-free diet have any health benefits if you don’t have celiac disease? Possibly. In a randomized study in which neither the researchers nor the participants knew if the foods they were eating contained gluten or not, 68 percent of people who thought that a gluten-free diet improved their GI symptoms reported worsening of their symptoms when they were fed gluten-containing foods without their knowledge. However, the study only looked at 34 patients. Use of gluten-free diets for other conditions, such as autism, is highly controversial.

How trustworthy is gluten-free labeling? While products as diverse as lipstick brands to chocolate and many types of groceries carry gluten-free labeling, right now, there are no legal standards that have to be met in the US. In 27 other countries, food labeled as gluten-free food can’t have more than 20 parts of gluten per million. Nearly three years after the FDA’s deadline for a rule to define “gluten-free,” the agency is finally getting serious about tackling the dangerous risks people with celiac disease can face due to misleading labeling.

What’s the treatment? Although there’s no cure, symptoms can be effectively controlled through dietary changes to avoid all foods with gluten. However, if you think you might have celiac disease, don’t start a gluten-free diet until you’ve been tested for the condition, since eliminating gluten can cause misleading test results, cautions Dr. Tennyson. Because the disease can also spark vitamin and mineral deficiencies, patients may also need supplements. For people with severe small intestine inflammation, doctors sometimes prescribe steroids.

Gluten Free in Church

Well, I don’t personally attend church, but I have wondered how GF devout folks handle the Communion issue, since Communion wafers are not gluten-free. It seems at least one church is changing to adapt to a more diverse congregation.

Via Chron:

Christians with celiac’s rejoice: More churches adopt gluten-free communion

For thousands of years, Christians have remembered their Savior through the sacrament of communion, taking in his blood and body through consecrated wine and bread.

But now that celiac disease and gluten intolerance is increasingly common, bread has become a bad word, at least for the one in 133 Americans who can’t eat wheat.

People with celiac disease can find gluten-free options at grocery stores and restaurants, as the gluten-free industry grows to accommodate their dietary restrictions, but when it comes time to break bread at church, it’s not as easy.

Starting this Sunday, Palmer Episcopal Church in Houston will offer gluten-free wafers, eliciting hardy amens from the parishioners who were unable to take communion without getting sick.

“It’s just a way of including folks, and I think that was Jesus’ intention, to open his table,” said the Rev. James Nutter, the church’s rector.

Those taking communion may request the gluten-free wafers and a separate chalice of wine, both kept apart from regular wafers to keep from contaminating them with dust. Even very small amounts of gluten can have health effects and prompt an autoimmune response.

While Jesus instructed his followers to consume bread and wine, “I don’t think the presence of Jesus is confined by the content of wheat,” in the bread, Nutter said.

Ecclesia Church in Montrose uses homemade bread in its sacrament, and church bakers have volunteered to also make a loaf with gluten-free flour to accommodate food allergies in their congregation.

“I don’t think the presence of Jesus is confined by the content of wheat,”

The United Methodist Church of The Woodlands is one of a handful of other local bodies who make gluten-free communion available.

When it comes to the Catholic Church, though, officiants must comply with stricter rules over the Blessed Sacrament as a way to preserve church tradition and follow the instructions given by Christ during the last supper.

For the matter used in the sacrament to be valid, bread must be only wheat flour and water, not a rice cake or any other form, and wine must be fermented, not grape juice, explained Msgr. Frank Rossi, pastor of St. Michael Church in Houston and Vicar General for the Archdiocese of Galveston-Houston.

“Obviously there is some tension and pastoral concerns when someone is a celiac and cannot break down wheat or is an alcoholic or has an allergy to wine,” he said.

Since 2003, the Catholic Church has made available low-gluten hosts, which have a very minimal amount of gluten (0.035 millionths of an ounce), as well as mustum, a form of wine that is in a suspended state of fermentation and doesn’t yet taste alcoholic.

Sister Jeanne Crowe wrote about the decade-long process to develop a suitable communion option for most Catholics with celiac’s in an issue of Gluten Free Living.

“For a long time, the inability to receive communion hosts, which are made primarily from wheat and water, was a major frustration for Catholics who follow a gluten-free diet,” she wrote.

Communion is a central practice for Christians and a hard one to skip, even for health reasons.

As more people continue to bring concerns over communion to their pastors, more churches will be adopting, “This is my (gluten-free) body, broken for you.”

Over 80 Listings on the Site!

A little while ago, I wrote that GlutenFreePDX.com had surpassed 70 listings on the site.

We’re now well over 80 verified, local listings for restaurants, bars, food carts and coffeeshops. And many, many more coming soon. With summer just around the corner, look for an expanded and updated Food Cart page, as well as additions to our Happy Hour page, including best places to find gluten-free happy hour specials, and where to find the elusive gluten-free beer on tap.

So thanks for visiting, and be sure to drop us a note if you notice an obvious exclusion from our ever-growing list of Gluten-Free PDX.

CNN Declares a Gluten-Free Diet as…Sexy!

Drop that bag of….flour. (?)  Yes, we’re cool, people. You and I already knew it, but thanks to celebrities publicly getting in on the game, we’ve now gone from legitimate to LEGIT. 😉

All kidding aside, it’s good to have a gluten-free diet being talked about, discussed, and shared. It will help increase awareness, food options, and perhaps even treatments. Let’s just hope things don’t backfire, and the demanding celebrities don’t turn our lifestyle into a ‘fad’ that is here today, gone tomorrow.

via CNN Eatocracy:

Jennie Bragg is an Editorial Producer in CNN’s Money Unit. Previously – Gluten-free and well-fed: the sneaky stuff

Fashion week has come and gone here in New York, but with all the models, designers and wanna-be fashionistas roaming about town just a week ago, I got to thinking a bit about trends. Like shoulder pads and last season’s romper, diets tend to go in and out of style.

So what’s hot right now? You guessed it: the gluten-free diet.

Popularized by celebrities like Gwyneth Paltrow and Elisabeth Hasselbeck, the G-free diet is all the rage. Once a solution for those diagnosed, like me, with celiac disease, now 93% of gluten-free interested dieters have never been diagnosed with celiac, according to research by the Hartman Group, a consumer research group.

So if you don’t have a gluten allergy or intolerance, why are you eating gluten-free?

Maybe you have ADHD or migraines or another medical reason; there are dozens. Cutting out gluten has worked health wonders for lots of folks. But eating G-free is tough, and if you are on this diet to lose weight, you may have chosen the wrong path.

First, you have to consider the way you are eating. A gluten-free diet can be similar to many other diets if you do it right; it’s high in protein, low-carb, lots of fruits and veggies. This all sounds very familiar. We have heard it from doctors, nutritionists, and weight-loss books for years. On the other hand, if you are simply planning to substitute gluten-packed foods with gluten-free foods, you may find the weight loss more challenging.

Many gluten-free products substitute wheat flour with ingredients unusually high in carbohydrates, like potato, rice or corn starch. This can often lead to a spike in blood sugar, and according to many medical professionals, you may end up packing on a few pounds, rather than losing them. (Fashion Week models, don’t try this at home.)

I did not go gluten free to lose weight – and believe me, I didn’t lose any. I was diagnosed with celiac disease and was trying to get healthy first and foremost, but I must say, the super-trendiness of this “diet” has worked in my favor. Thanks to millions of dieters testing the gluten-free waters, G-free products and G-free restaurants abound. While it may not be for everyone, I hope the gluten-free trend doesn’t go the way of the shoulder pad anytime soon. It is certainly working out for me.

NY Times: The Expense of Eating with Celiac Disease

Kelly Oram and his daughter Micaela make gluten-free bread at home. Mr. Oram suffered for years from celiac disease before a doctor thought to test him for it.

Kelly Oram and his daughter Micaela make gluten-free bread at home. Mr. Oram suffered for years from celiac disease before a doctor thought to test him for it.

VIA NY Times: YOU would think that after Kelly Oram broke more than 10 bones and experienced chronic stomach problems for most of his life, someone (a nurse? a doctor?) might have wondered if something fundamental was wrong with his health. But it wasn’t until Mr. Oram was in his early 40s that a doctor who was treating him for a neck injury became suspicious and ordered tests, including a bone scan.

It turned out that Mr. Oram, a music teacher who lives in White Plains, had celiac disease, an underdiagnosed immune disorder set off by eating foods containing gluten, a protein found in wheat, rye and barley.

Celiac disease damages the lining of the small intestine, making it difficult for the body to absorb nutrients. Victims may suffer from mild to serious malnutrition and a host of health problems, including anemia, low bone density and infertility. Celiac affects one out of 100 people in the United States, but a majority of those don’t know they have the disease, said Dr. Joseph A. Murray, a gastroenterologist at the Mayo Clinic in Minnesota who has been studying the disease for two decades. The disease can be detected by a simple blood test, followed by an endoscopy to check for damage to the small intestine.

Seven years after receiving his diagnosis, Mr. Oram, who is married and has one daughter, is symptom-free, but the cost of staying that way is high. That’s because the treatment for celiac does not come in the form of a pill that will be reimbursed or subsidized by an insurer. The treatment is to avoid eating products containing gluten. And gluten-free versions of products like bread, pizza and crackers are nearly three times as expensive as regular products, according to a study conducted by the Celiac Disease Center at Columbia University.

Unfortunately for celiac patients, the extra cost of a special diet is not reimbursed by health care plans. Nor do most policies pay for trips to a dietitian to receive nutritional guidance.

In Britain, by contrast, patients found to have celiac disease are prescribed gluten-free products. In Italy, sufferers are given a stipend to spend on gluten-free food.

Some doctors blame drug makers, in part, for the lack of awareness and the lack of support. “The drug makers have not been interested in celiac because, until very recently, there have been no medications to treat it,” said Dr. Peter Green, director of the Celiac Disease Center at Columbia University. “And since drug makers are responsible for so much of the education that doctors receive, the medical community is largely unaware of the disease.”

As awareness grows and the market expands, perhaps the prices of gluten-free products will come down. Meanwhile, if you suffer from the disease, here are some ways to keep your costs down.

When people first learn they have celiac disease, they tend to stock up on gluten-free versions of breads, crackers and pizza made from grains other than wheat, like rice, corn and buckwheat. But that can be expensive and might not even be that healthy, since most gluten-free products are not fortified with vitamins.

“The most important thing to do after being diagnosed is to get a dietary consultation,” Dr. Murray said. With planning, you can learn to base your diet on fruits, vegetables, rice and potatoes. “I have some patients who rarely use those special gluten-free products,” he said.

Get in the habit of reading labels, advises Elaine Monarch, executive director of the Celiac Disease Foundation, a nonprofit organization in Studio City, Calif. Soy sauce, for instance, often has wheat protein as a filler. But Ms. Monarch found a brand of light soy sauce at her local grocery with no wheat that cost much less than one specifically marked as gluten-free. “There are often alternatives to specialty products, but you have to look,” she said.

Gluten-free bread is more expensive than traditional bread and often less palatable. And that holds for many gluten-free items. Some people, including Mr. Oram, end up buying a bread machine and making their own loaves. Nicole Hunn, who cooks gluten-free meals for her family of five and just started the Web site glutenfreeonashoestring.com, avoids mixes, which she says are expensive and not that tasty, and instead bakes with an all-purpose gluten-free flour from a company called Bob’s Red Mill, which can be used in place of wheat flour in standard recipes.

If you’re too busy to cook, look for well-priced gluten-free food at large chains like Whole Foods Market and Trader Joe’s. “Trader Joe’s now carries fantastic brown rice pasta that is reasonably priced and brown rice flour tortillas that can sub for bread with a variety of things,” says Kelly Courson, co-founder of the advice site CeliacChicks.com. Ms. Courson put out a Twitter message to her followers and learned that many were fans of DeBoles gluten-free pastas, which can be bought in bulk on Amazon, and puffed brown rice cereal by Alf’s Natural Nutrition, just $1 a bag at Wal-Mart.

Finally, it may be worthwhile to join a celiac support group. You can swap cost-cutting tips, share recipes and learn about new products. Many groups invite vendors to bring gluten-free products to meetings for members to sample — members can buy items they like at a discount and skip the shipping charges. Support groups typically have meetings, as well as newsletters and Web sites where you can post questions. Groups to check out include the Celiac Disease Foundation and the Gluten Intolerance Group of North America.

Finally, if you itemize your tax return and your total medical expenses for the year exceed 7.5 percent of your adjusted gross income, you can write off certain expenses associated with celiac disease. You can deduct the excess cost of a gluten-free product over a comparable gluten-containing product.

Let’s say you spend $6.50 on a loaf of gluten-free bread, and a regular loaf costs $4; you can deduct $2.50. In addition, you can deduct the cost of products necessary to maintain a gluten-free diet, like xanthan gum for baking. If you mail order gluten-free products, the shipping costs may be deductible, too. If you have to travel extra miles to buy gluten-free goods, the mileage is also deductible. You’ll need a doctor’s letter to confirm your diagnosis and your need for a gluten-free diet, and you should save receipts in case of a tax audit.

Do you have a flexible spending account at work? Ask the plan administrator if you can use those flex spending dollars on the excess cost of gluten-free goods — many plans let you do this. For more on tax deductions, go to the tax section of the Celiac Disease Foundation’s Web site.  Yes, managing the disease is a hassle. But untreated celiac disease can wreak havoc with your health. A study published in the July issue of the journal Gastroenterology found that subjects who had undiagnosed celiac were nearly four times as likely to have died over a 45-year period than subjects who were celiac-free.

“Sometimes I resent how time-consuming it is to cook from scratch,” Ms. Courson of CeliacChicks.com said. “But I remind myself that my restrictions actually help keep me in line, more than the next person with unhealthy foods readily available.”