Media picks up on Celiac Disease

Emma talking to FOX 9 reporter Scott Wasserman

Finally some attention! Celiac disease got major media attention on Wednesday with a big  report that came out from the Mayo Clinic.  I reported on it as did many other blogs and some local news organizations from Atlanta to San Francisco.  But later in the afternoon I got a call from FOX 9, our local FOX affiliate in the Twin Cities.  They wanted to see if I would be interested in talking with them for a story that evening.

They stopped by late in the afternoon and talked with both my celiac daughter, Emma, and I.  We talked through the gluten-free lifestyle, managing it and getting educated about it.  The reporter, Scott Wasserman,

asked about a restaurant that caters to the gluten-free lifestyle and I recommended

Michello’s, a “mom and pop” shop that is near my house, which has great gluten-free pizza.  Michello’s was on board and also did a great interview and gave him fantastic access.  Take a peek at the video to the right, or see the FOX 9 report on FOX’s website.

KARE 11 did the story as well,  even leading their 10:00 p.m. newscast with it.  Boyd Huppert talked to an expert and a patient.  Great coverage on that station too!  The Minneapolis Star Tribune reported the story Wednesday morning when the news embargo (which keeps reporters from revealing the study’s results until a certain time) was lifted.

From the looks of things, the story was covered more heavily in Minnesota — most likely because the Mayo Clinic is based in Rochester, Minnesota.  I could not find the story on CNN or MSNBC (and they have anchors who have celiac disease). The New York Times published it late this morning.  At any rate, the study received a great amount of coverage and hopefully helped bring celiac disease to light for so many people who may not know about it!  Keep up the good work!

Loads of information came out of the Mayo Clinic today on celiac disease, it could contribute to the way celiac disease is handled in this country in the future.  Here are the headlines:

A change in the environment appears to have made celiac more common than 50 years ago

Undiagnosed or “silent” celiac is associated with nearly quadrupled mortality.

May need to consider celiac testing for general population.

Wow! I found those headlines from the Mayo Clinic eyepopping! First of all I love the Mayo Clinic. They do tons of research for all kinds of different health issues. But the clinic and Dr. Joseph Murray have been particularly supportive of celiac disease.

The research which was reported in the journal Gastroenterology was held for a big news release today, which is why you might be seeing everywhere right now.

Celiac Disease is more common

The headline of the news release for the study reads “Celiac Disease Four Times More common than in 1950s”.*

“The Mayo Clinic research team tested blood samples gathered at Warren Air Force Base (AFB) in Wyoming between 1948 and 1954 for the antibody that people with celiac disease produce in reaction to gluten. They compared those blood test results with those from two recently collected sets from Olmsted County, Minn. One [group] matched the ages of those from the 1948–1954 testing at the time of the blood draw, and the other [group] matched their birth years. Researchers found that young people today are 4.5 times more likely to have celiac disease than young people were in the 1950s, while those whose birth years matched the Warren AFB participants were four times more likely to have celiac disease.” – Mayo Clinic

“Celiac disease has become much more common in the last 50 years, and we don’t know why,” said Joseph Murray, M.D., the Mayo Clinic gastroenterologist who led the study.

What is making celiac more common?

“Something has changed in our environment to make it more common,” Dr. Murray said. But it appears they don’t know what.**

Dr. Murray says the study’s findings highlight the need for increased awareness of celiac disease both among physicians and patients. “Part of the problem is that celiac disease symptoms are variable and can be mistaken for other diseases that are more common, such as irritable bowel syndrome.” Dr. Murray continued, “Some studies have suggested that for every person who has been diagnosed with celiac disease, there are nearly 30 who have it but are not diagnosed.”

Undiagnosed celiac associated with quadrupled mortality

“Subjects who did not know they had celiac disease were nearly four times more likely than celiac-free subjects to have died during the 45 years of follow up,” reports the Mayo Clinic’s news release. “The increasing prevalence, combined with the mortality impact, suggests celiac disease could be a significant public health issue,” says Dr. Murray.

What’s next?

Well nothing’s for sure. Dr. Murray suggests a potential need for larger-scale action:

“We may need to consider looking for celiac disease in the general population, more like we do in testing for cholesterol or blood pressure.”

I wish this would happen. I think there are too many people out there having health troubles and not understanding why or “poo-pooing” the idea of celiac disease.  I will be impressed and surprised if mass testing ever happens. I sure hope it does – but it will definitely take years of more research and likely some political lobbying to make it happen. In the meantime, we all need to keep spreading the word online and in our communities to let people know about celiac disease.

*Hear and see more! Mayo Clinic’s on-camera interview with Dr. Joseph Murray

**Amy’s two cents: What isn’t addressed in this study is whether more widespread education has helped increase the diagnoses as well. Yes, education in the public and in the health care industry continues to be very poor, but I think more people have heard about celiac disease now than ever before, which could be leading to some additional diagnoses. Surely not the entire 4-fold increase the clinic is talking about, but it may have contributed somewhat. That however is my take – not the Mayo Clinic’s.

Homemade, Gluten-Free Strawberry-Rhubarb Jam

Okay it is rhubarb time and my neighbor Kathryn was on a mission recently, when she harvested her crop. Within hours she was handing over a nice handy jar of homemade strawberry-rhubarb jam for our family. What’s more is that it’s gluten-free.

The jam is a really nice combination of tart and sweet. It also has a very nice texture. “I just love it,” said Kathryn about her recipe, “my kids do, too. They love to help me throughout the whole process and actually take great pride in the finished product.” Sounds like a good summer project too!

She was generous enough to let me share the recipe with you!

Gluten-Free Strawberry-Rhubarb Freezer Jam

4 cups rhubarb diced small

1/4 cup water

3 1/4 cups sugar

Yum! Jam on GF Toast

1 3oz package Jello (strawberry or raspberry)

Cook the rhubarb and water covered, stirring occasionally until mushy. (I like to use the spoon against the side of the pot to smash the rhubarb as much as possible- I don’t like my jam super chunky but this would be personal taste.)

Add sugar and stir until dissolved.

Keep heat on low. Add 1 pkg. Jello and stir well until completely dissolved. This takes some time- don’t rush it.

Pour into jars, cover and freeze.

Makes 3 pints.

Oh those painful mouth sores — technically they’re called aphthous stomatitis — many of them are more commonly known as canker sores.  Now new research shows that their cause may lie much deeper than what you think.

It’s crazy how many maladies with our bodies can be traced back to undiagnosed celiac disease.  New research in BMC Gastroenterology now confirms consistent mouth sores can also  be a symptom. On Monday Reuters printed an article about the study which says for 5 percent of the celiac population their only symptom of the disease is a mouth sore.

“Aphthous stomatitis is a painful open ulcer, such as a canker sore, in the mouth that is white or yellow and surrounded by a bright red area.  They tend to reappear in times of stress and are associated with viral infections, food allergies and other conditions” — Reuters, June 29, 2009

Researchers at Tehran University of Medical Sciences in Iran studied  247 patients who had at least 3 mouth sores a year and researchers tested them for celiac disease.  Positive test results for seven patients led to an endoscopy and biopsy of the small intestine — the gold standard for diagnosing celiac disease.  While the endoscopy said only two of the patients had celiac, the biopsy proved otherwise, confirming all seven with celiac disease.

The research says these seven patients complained that they did not respond “to conventional mouth ulcer medications, including topical corticosteroids, tetracycline and colchicine.”  Of the seven patients, four started on a gluten free diet and “all showed significant improvement within 2- 6 months.”  Officially the research concluded, “Gluten-sensitive enteropathy [celiac disease] should be considered in aphthous stomatitis patients.”   Also “a lack of response to conventional treatment could be another indicator of celiac disease risk.”

Other articles support this new research

Fellow blogger Kyle Eslick at celiac-disease.com explored this issue in January.  He quoted the Expert Doctor’s Health Tips Blog when talking about a possible reason why canker sores are a problem for celiacs:

“Some experts think it’s associated with the body’s immune system. Here again it could also relate back to celiac disease because gluten flattens the villi in the small intestine and nutrients can’t be absorbed so the immune system suffers and its defenses are broken down. So nutritional deficiencies could play a part.”

Health911.com also suggests celiac as a possible cause for canker sores:

“Individuals with celiac disease – the inability to digest the gluten in some grain (wheat, oats, rye and barley) foods – have a greater incidence of canker sores. Even without celiac disease, however, a person who is prone to canker sores may be more sensitive to gluten.”

Certainly not all people with canker sores have celiac disease — just like not everyone who has liver disease or osteoporosis has celiac.  But this new research suggests that if you have canker sores and nothing helps them — maybe you should explore the possibility.  The cause could be much deeper than you think.

Liz Lovely

Congratulations to Laura who won the drawing for Liz Lovely gluten-free cookies!  I reviewed the product earlier this week and found them to be very tasty!  My daughter randomly drew Laura’s name from our list of registered users for thesavvyceliac.com.

Congratulations to Laura.  I will email her to get her address and ship them out!

Davanni’s Gluten-Free Taste Test

CALLING ALL PIZZA LOVERS! Davanni’s and French Meadow Bakery are teaming up on some gluten-free pizza and they need you!  The French Meadow Bakery is conducting a gluten-free pizza taste-test at the Davanni’s location in Edina (Highway 100 and Vernon).

The event is coming up on July 15th from 5:30- 8:30 p.m.  Stop by any time during those three hours to sample the pizza.  You’ll fill out a questionnaire and offer feedback.  Today, Diane at French Meadow Bakery reminded me how important it is for people to RSVP to this event.  You can do so via email — diane@frenchmeadow.com.

For the last several years I, and I am sure many of you, have been watching as the Food and Drug Administration takes on gluten. First it began with the Food Allergen Labeling and Consumer Protection Act of 2004 – but only the word wheat affects us there (no barley, rye or possibly oats – sorry if the label doesn’t tell me the oats are gluten-free I will just assume they’re contaminated).

However this summer, the FDA is expected to announce its decision about how companies will handle their volunteer labeling of the words “gluten-free”. According to the Celiac Sprue Association, the FDA should be in its final stages now. It is conducting a survey to celiacs and non-celiacs about different wording on labels:

” The study will survey a group of 5,000 adults on their perceptions of characteristics related to the claims of ‘gluten-free’ and its allowed variants. The survey will also gauge perceptions of claims such as ‘made in a gluten-free facility’ or ‘not made in a facility that processes gluten-containing foods’. The study will also assess consumer understanding of ‘gluten-free’ claims on foods that are naturally free of gluten. Finally, the study will gauge consumer reaction to a product carrying a gluten claim along with a statement about the amount of gluten the product contains.”

The FDA is also considering 20 PPM as the maximum standard for gluten in “gluten-free” food. This standard has already been approved by the The Codex Alimentarius Commission -a joint effort of the Food and Agriculture Organization of the United Nations (FAO UN) and the World Health Organization (WHO).

Tell us what you think!

I have been hearing many different opinions on the potential 20 PPM rule in the last 6 months, and I want to know what you think! I have created a 4-question survey for a future post and I would love for you to take it and tell us what you think!  Take the survey now.

Liz Lovely's GF Cookies are Tasty!

Hey I’ve got a cookie review for you-and it includes a freebie for one of my registered users! The Linden Hills Co-op provided me with Liz Lovely cookies to sample. I’d never had them before. It’s possible I’ve seen them around and not realized they existed, but it seems like I’ve never heard of these before. I won’t soon forget them…those cookies are tasty.

Gluten-Free Chocolate Chip and Chocolate Fudge Cookies

The chocolate chip cookie was very tasty. It has the essence more of cookie dough than of a regular fluffy chocolate chip cookie or even a gooey undercooked cookie. It was very good. Grace my 7-year-old loved them. However, Emma my celiac girl thought they were a bit dry. I don’t think she entirely understood the vision of the cookie to be honest.

The chocolate fudge was slightly more brownie-tasting, with a sugar coating on the outside. It is also very good and very rich.  My friend Brenda told me she thought these cookies would be great crumbled over ice cream!

Chocolate Fudge and Chocolate Chip Cookies

I honestly think if I had a hankering for a good cookie I would totally pick this out. But I wouldn’t be able to eat much at one sitting, because they’re so rich – and big (not necessarily a bad thing). The cookies are about three inches in diameter and are quite thick, so when you buy a two-pack, one cookie should be enough for one person. In fact, if you’re watching your waistline, you might want to watch how many cookies you eat. The serving size is a half a cookie and the calories per serving are 190 (for the chocolate chip) and 170 (for the chocolate fudge).  For some of us cookie lovers, calories may not matter when it comes to taste — especially for a gluten-free product!

However one healthy upside is that the cookie is made of certified organic ingredients and it is also vegan, dairy-free and egg-free with zero trans fats. I really appreciate how this company has put a tasty product on the shelves while adhering not only to dietary constraints so many of us have, but clearly Liz Lovely is sticking by her beliefs and using healthier ingredients.

You can find these gluten-free products in the forms of snickerdoodles, peanut butter, German chocolate cake, and ginger molasses — as well as the aforementioned chocolate chip and chocolate fudge. They retail for around $4.00 for a two-pack. You can always find these at the Linden Hills Co-op in Minneapolis. But if you can’t get there, check out Liz Lovely online!

Win your Gluten-Free Liz Lovely cookies!

I have a 2 pack of chocolate chip cookies to give away. I will randomly draw a name from registered users of thesavvyceliac.com. You must be registered by 11:59 p.m. Tuesday (June 23, 2009). I will conduct the drawing on Wednesday (June 24, 2009) and announce the winner on my blog. I will also email the registered user, so I can get their mailing address and send them out! If you have already won a prize this year, you are not eligible.

This weekend I posted about seeking a gluten-free meal at a traditional non-gluten-free friendly locale: Old Chicago. Known for its pizza and calzones, Old Chicago really is a gluten-lover’s dream. Last night we went there and here’s how it went….

Ordering a Gluten-Free Meal

I was in luck; as soon as we arrived our friends already had a table and had given a head’s up to our server about us needing a gluten-free meal. What our server didn’t know was that I had prearranged our meal already.

When we were seated, she came out with a sheet of paper entitled “Gluten 101″. It appeared to be an educational sheet for staffers about gluten and the challenges of avoiding gluten at their establishment (more on this in a moment). I told her I had talked to a manager from an earlier shift who arranged a non-seasoned burger that will be cooked in the oven for our daughter. She went and checked with the cooks and they knew exactly what we were talking about! Whew! Big step accomplished!

When we officially ordered, I reiterated what I wanted for my gluten-free girl, Emma, and then said, “Please, please, please don’t put a bun on it!” She said the cooks had already told her it wouldn’t come with a bun. Yeah! Everyone else ordered their calzones, pizzas etc.**

Getting the Meal

Everything was perfect! The communication, knowledge of the staff; ultimately the order came out just right. Emma was very happy with her meal which officially consisted of a burger patty and raw veggies. I also brought some chips for her. She ate it right up and was completely content! I need to give Old Chicago a big “pat on the back” for accommodating us on this trip.

“Gluten 101″

I mentioned this sheet of paper that came to the table called “Gluten 101″. It looks like information for staff about how to handle gluten-free clientele. What’s good about the sheet is that it is a quick read for anyone who suddenly has a customer with this concern. It defines gluten, Old Chicago’s “position”, “The Upside”, and staff education.

There are a few things I wanted to highlight here and it may very well deter some celiacs from ever trying to eat there — but I think it’s important to know. According to the company information on gluten, the company “position” is:

“Given our homemade pizza concept, it would be inappropriate to encourage gluten intolerant persons to make us a gluten-free destination through special menuing.” — Old Chicago position on gluten

But then it goes into “The Upside: We have many items that may be considered free of gluten ingredients…”

“All of our spec [sic] Ken’s dressings are gluten free as well as many of our meats. Vegetables, salad mixes and corn chips are also appropriate selections. In addition, we’re pretty good at tailoring special meals (e.g. bunless burger). A few of our gluten-free meats include: Steak, Ham, Turkey, Chicken breast (when gf is available– check with manager)…”

The list also includes some of their pizza toppings. Another upside they don’t list is that our Old Chicago’s bar was stocked with Redbridge (gluten-free) Beer. This should totally be on their Gluten 101 list.

Finally under Staff Education, I think it had the most important statement for celiacs.

“Please ensure they understand that because we are a make-from-scratch pizza and cookie kitchen, there is always some level of flour in the air. Nonetheless, we still have (or can put together) items that do not directly contain gluten.”

So this information definitely lays out the risks a celiac is taking by eating there. I know many who would choose not to eat at Old Chicago based on the last statement. In fact I may have reconsidered our outing there had I known.  But you have to give the company credit. They are managing expectations of their gluten-free clients (although some might say they are covering their butts). No matter how you characterize it, the flour in the air is a real issue that celiacs need to be aware of.

Overall, our family had a very successful trip to Old Chicago in Uptown Minneapolis.  In fact, when I was arranging the meal earlier in the day the person I talked to said the company was looking into ways to make its menu more gluten-free friendly. However, I would say their “Gluten 101″ statement might need to change a bit if that happens.

**Just as a side note, Emma really doesn’t like pizza. I have noted that in other pizza posts before. She’s tried a few places, but continues to not have any desire or craving for it. So no one should feel bad that she had a burger in a place that does mostly pizzas.

So tonight our family is meeting up with close friends for dinner before heading out to an improve place called ComedySportz. Our friends are already planning to dine at Old Chicago. I thought before I make the decision to eat at home or somewhere else, I would check with the restaurant to see if they could accommodate!

Asking all the questions

I called Old Chicago, which as you may know is known more for its pizza than anything else. Since pizza is out of the question, I called and asked them about their hamburgers. I made the call just before they opened for the day at 10:55 a.m; a time when I knew they wouldn’t be too busy. The chef I talked to said the burgers there do get seasoned so he wasn’t sure on the gluten-free status of the seasoning.

I also threw out to him my back-up question of whether they would cook noodles in clean water for us if the burger option wasn’t possible and he said yes, and they have done that before for other customers. So knowing all of that, I felt good about our conversation. So he took my name and number and talked through options with his kitchen manager when he got in about an hour later.

Getting the answers

I got my phone call back and they said they could grab a hamburger before the seasoning is put on it and they would bake it alone in the oven to avoid cross contamination. He gave me the name of the manager who will be on duty tonight. And he told me he would spread the word in the meantime. I also mentioned the approximate time we would be there.

How will it turn out? Good question…I’ll have the answers for you in a post on Sunday.

I was doing some research tonight when I stumbled upon what I consider a most disturbing celiac-related confession on a website that appears to highlight anonymous revelations. The title was I’m Dying and I’m 19…

“I have Celiac Disease and even though I know it’s killing me I still eat and use products containing wheat and flour…I don’t know how to stop doing this to myself and apparently death isn’t good enough reason for me to quit : / I have also recently been diagnosed with cancer and had surgery to remove it and my appendix where it was found.” — Anonymous on experienceproject.com

The skeptical news person in me questions how realistic the preceding “confession” is, but whether it’s real or not, I believe the idea of non-adherence to the gluten-free diet is a real issue and deserves some space on this blog. So allow me to use it as a launching point for a serious discussion.

Sticking and not-sticking with the gluten-free diet

Just last month on Celiac.com a woman started a thread  which said on occasion she just couldn’t “stop binging on gluten”. Then the outcry of support came from readers: concerns about depression, nutritional deficiencies, and maybe an eating disorder. The woman said she’d get help and turn things around – and that she appreciated the support.

Even knowing that infertility, osteoporosis, cancer and more can all be a result of untreated celiac disease, what causes a celiac to turn away from the very diet that could prevent all of these ailments? Is it just because someone told them they can’t have it -now they want it more? Is it because they crave certain favorites so much they just feel they cannot deny themselves? Is it pressure to fit in, in our processed-food culture?

One survey conducted two years ago and printed in Medscape showed that the gluten-free diet is is followed in only 50-75% of patients. The reasons: “unclear food labeling, low levels of knowledge about the diet, reliance on processed foods and the cost and availability of gluten-free foods.”

“Only 2 factors were associated with worse adherence, concern that cost made a gluten-free diet more difficult to follow and the admission that changes in mood and stress levels affected the ability to adequately follow a gluten-free diet.” –Dr. Daniel Leffler, MD Beth Israel Deaconess Medical Center, Boston, MA

Increasing Adherence to Gluten-free Diet

So how do you fix this problem? One thing to do, according to the aforementioned research, is to join a support group. This helps increase your knowledge base about celiac and the gluten-free diet, which will help you sort through any unclear labeling and reliance on processed foods -which were mentioned as problems earlier. I know it really helped me shortly after Emma’s diagnosis.

More recently a few studies have other, what could be considered more-clinical, suggestions. One study profiled on thesavvyceliac.com last month recommended doctors begin using a 7 question survey to determine gluten adherence, and then work with the patient to increase adherence.

Another study I found on the National Institutes for Health website recommended trained nutritionist evaluations as the best to help people adhere to the gluten free diet.

With any luck, the person who posted the “confession” will hopefully get some help and begin to follow the diet. And we all wish him or her the best as they go through the process of an early cancer diagnosis.

If you have celiac disease and are struggling with staying on the diet, I highly recommend getting involved in a support group or a celiac organization of some kind. Knowing you’re not alone really can help your psyche. If you think it goes deeper than that, consult your physician about other steps you can take to help you help yourself and get better!