Celiac Disease Awareness and an Idaho story March 10, 2009

Two years ago I posted this on my local on-line news service.  I received some interesting feedback and I want to share it because someone may be helped by this information:

I am trying to raise awareness of celiac disease. Many people suffer for years without a diagnosis. I just found this article on www.celiac.com which may be of interest to some of you.

CNN Newsroom Anchor Heidi Collins to be Official Spokesperson for the National Foundation for Celiac Awareness

Copyright © 1995-2006
Scott Adams.
Celiac.com 11/28/2006 – The National Foundation for Celiac Awareness (NFCA) is thrilled to announce that CNN Newsroom Anchor Heidi Collins has signed on as the foundation’s official spokesperson.

As a fellow celiac and a member of the news media, Heidi will bring a wealth of knowledge to NFCA. Every weekday, Heidi anchors CNN Newsroom from 9am-Noon EST. Previously she has provided in-depth reports for Anderson Cooper 360°, Paula Zahn Now, and The Situation Room, as well as served as a news anchor for CNN’s American Morning. Heidi has received three Edward R. Murrow awards as well as an Associated Press Award in the best documentary category.

Heidi’s journey with celiac disease began shortly after she finished graduate school and began her first television job as an anchor at a station in Wichita Falls, Texas. About one year after she started this job, she learned she was pregnant, news that thrilled both Heidi and her husband Matt. The couple kept the secret for quite some time, but finally six months into the pregnancy, Heidi announced on air that she would be having a baby. Sadly, just a few weeks after announcing her pregnancy, Heidi lost the baby. She received very little explanation from her doctors about why the tragic loss had occurred other than from fetal demise.

During Heidi’s next television job in Colorado Springs, she developed a near fatal blood clot in her leg. After four months in the hospital and arterial bypass surgery, a vascular surgeon told Heidi she would never be able to have children. The doctor explained that her blood vessels would not be able to handle the strain of a pregnancy. Heidi and Matt were devastated.

Heidi’s next television job brought the couple to Denver, where after a lengthy search, they found a high-risk obstetrician who felt that having a child would not be impossible after all. Nine months later, two injections a day of blood-thinner and constant observation by a team of physicians, Heidi gave birth to her son Riley. She says it was the happiest day of her life.

However, Heidi continued to deal with stomach pains, severe headaches and anemia. The constant health issues grew nearly intolerable as she moved to CNN’s New York office. She continued visiting doctors until finally after 15 years of one health problem after another, her general practitioner diagnosed her with celiac disease. With one simple blood test, Heidi had found a diagnosis that would allow her to work toward a cure for her chronic medical conditions and an answer as to why her pregnancy had failed.

“Through being the spokesperson for the National Foundation for Celiac Awareness, I hope to significantly reduce the time it takes for people with celiac disease to be accurately diagnosed and empower people to reclaim their health and restore their lives,” Collins said. “It is through the power of my personal story and my ongoing struggle with celiac disease that I hope to encourage people to get tested and make a positive change in their lives.”

The National Foundation for Celiac Awareness (NFCA) is a non-profit organization dedicated to raising celiac awareness and funds for research. NFCA is made up of professionals, medical specialists, and volunteers—all dedicated to working with leading researchers around the world to better understand celiac disease. Visit www.celiaccentral.org or call 202-904-7865 for further information.

(withheld name) Says:

December 7th, 2006 at 4:16 pm
A little personal story to share:

This year’s Labor Day weekend was a milestone in our family in that one year had passed since our 2-year old son , Carter, was diagnosed with Celiac’s. When we were admitted into Dr. Henry Thompson’s care at the Idaho Pediatric Gastroenterology office in Boise just before Labor Day 2005, Carter was, in his words, within a month of dying. His then-unknown aliment had taken its toll on my son–he was listless, would not walk, would not talk and would barely eat solid food. All he wanted to do was to be held by my wife or I. After spending 4 days at St. Lukes, and under Dr. Thompson’s excellent care, the diagnosis of Celiac Disease was given. We had never heard of such a disease. The people we told about the disease didn’t know what it was either. Some facts in case you don’t know:

*Coeliac disease or celiac disease is an autoimmune disorder of the small bowel that occurs in genetically predisposed individuals in all age groups after early infancy. Symptoms may include diarrhoea, failure to thrive (in children) and fatigue.

*Coeliac disease is caused by an abnormal reaction to gliadin, a gluten protein found in wheat. Upon exposure to gliadin, the body’s immune system cross-reacts with the enzyme tissue transglutaminase, causing an inflammatory reaction that leads to flattening of the lining of the small intestine, which interferes with the absorption of nutrients. The only effective treatment is a diet, lifelong in principle, from which gluten is absent.

*Gluten is an mixture of proteins found combined with starch in the endosperm of some cereals, notably wheat, rye, and barley. It constitutes about 80% of the proteins contained in wheat, and is composed of the proteins gliadin and glutenin.

*The prevalance of Celiac Disease is thought to be approximently 1 out of 125 people, which is about 1.1 million people in USA. It is a chronically undiagnosed and misdiagnosed condition that is thought to be hereditary.

*It can take years to get a correct diagnosis (as shown in above story), yet can be detected with a simply blood test.

*Celiacs Disease is NOT an allergy, it is a genetic disorder.

The day we found out, I went to a book store and bought 3 different books on the disease. Before leaving the hospital, Dr. Thompson gave us the encouraging news that the extensive damage that wheat had done to my son’s intestinal tract could be cured, in time, with a simple change of diet. On our way back to the valley, we stopped at the Boise Co-op and purchased a wide variety of gluten-free foods.

Back home, we spent days roaming the internet and printing off volumes of material to get an idea of what it meant to be “gluten-free” and how to eat correctly so our son could heal. We began food shopping at The Health Food store in Twin. We were thrilled when the FDA mandated that manufacturers list the major allergens on food labels–how much easier it is to shop this way! We found that hundreds of food items made for Wal-mart are clearly labeled with “Gluten-Free” on them. We were able to go out to eat again, because the chain restaurant Outback has a gluten-free menu. We discovered an extremely tasty rice pasta called Tinkyada. It’s sold at Atkinson’s and if you haven’t tried it, I encourage you to buy a package and see how good it is. Locally, I’ve heard that the the Full Moon Restaurant will prepare your food gluten-free if you ask for it that way. Albertson’s sells several kinds of gluten-feed food, such as Bob’s Red Mill cookies and cakes, pancake mixes and bread dough. Atkinson’s sells a delicious spice cake made by a company in Coeur D’Alene called Namaste. We have learned a lot since a year ago, but learn something new almost every week.

Unfortunately, there is no support structure in the valley. The nearest Celiac Awareness groups are in Boise and one just started in Twin. Hopefully this blog will initiate something here in this valley. I personally know of one other family that share our diet-restrictions due to wheat/gluten issues. I am sure there are more.

Sorry is so long, hope you learned something!

nb

December 8th, 2006 at 10:20 am
I would be remiss in not mentioning that KB’s has also been very accommodating towards our family eating (and enjoying) a gluten-free meal.

Chia cereal February 3, 2009

Ruth's Chia Apple Almond Cinnamon cereal

I tried this cereal, Ruth’s Chia Goodness Apple Almond Cinnamon, recently and was pleased with it.  Chia is a seed which is gaining popularity and is gluten free.  It contains more than five times the calcium of milk.  It is also a good source of fiber which is good for people on a gluten free diet because many of the grains we can eat are not high in fiber. 

This cereal is good hot or cold.  The cereal gets thicker as it stands in liquid.  You add water or milk to the cereal and let it sit for 3-5 minutes and you have a nice thick and tasty cereal. 

It’s worth a try if you are looking for a new gluten free cereal.  It is available in 2 other flavors, too.  I purchased it from the Gluten-Free Mall.

“To celiac disease sufferers, gluten is the evil ingredient” by Debbie Gilbert January 21, 2009

I found this excellent article about celiac disease by Debbie Gilbert on the Gainsville Times on-line edition. 

She talked with Dr. Ben Gold, a pediatric gastroenterologist, Professor of Pediatrics and Microbiology,
Marcus Professor and Director, Pediatric Gastroenterology, Hepatology and Nutrition at Emory University and Dr. Stephen Moore, a Gainesville gastroenterologist.

I especially like Dr. Moore’s advice:

Moore sees no reason for anybody to be on a gluten-free diet if they don’t have celiac disease.

“It’s a difficult diet to follow,” he said. “I don’t think it’s a good idea to put a child on the diet if they haven’t been tested and diagnosed as gluten-intolerant.”

I cried when I saw (fill in the blank) that I could eat! January 7, 2009

I saw this article from MSNBC/Associated Press about business booming for gluten-free products. The first sentence is:

“Mary Burgdorff said she cried the first time she walked into Molly’s Gluten-Free Bakery in Pewaukee, Wis., because she’d found treats her son could eat without getting sick.”

Only a celiac sufferer could understand this feeling. I remember my first (almost) cry. I was in New Zealand wandering around Queenstown and glanced at a menu from a restaurant on the street. “Gluten-free pizza”. My heart fluttered but I didn’t really believe it.  I went in to check it out. Yes, their pizza was gluten-free. It was my first piece of pizza in 2 years. It was pretty good, too.

As I’ve traveled around the world to a few places I have also felt this feeling upon finding the simplest things.  When I found rice cakes in a little shop on the island of Andros in Greece I didn’t know whether to laugh or cry.  Finding gluten-free cassava crackers in the Dominican Republic was another delicious moment.

What have you cried over?

Gluten-free diet article in U.S. News and World Report December 19, 2008

I caught up on some reading lately and in the December 8, 2008 issue of U.S. News and World Report there is a section containing many articles on digestive disorders. 

The first article talks about many disorders but doesn’t mention celiac disease.  Same with the second article.  I was getting disgusted with the reporting when I turned the page and was happy to see the third article.  It is titled “Gluten-Free Diet: a Cure for Some, a Fad for Most” by Adam Voiland. 

The article states that not quite 1% of Americans have celiac disease.  But we know that the majority of them don’t know they have it and are suffering the consequences.  1% of the U.S. population is over 3 million people.

I like the last paragraph of the article where Mr. Voiland brings up the fact that “as gluten-free eating becomes faddish, there’s worry that respect for the diet as a medical treatment could founder.”   He quotes  Carol Shilson, who is executive director of the Celiac Disease Research Center at the University of Chicago, as saying: “We have to be careful that [the diet's popularity] doesn’t negate the seriousness of the situation for people with celiac disease.” 

I agree and I hope we can all stay vigilant.  Many people diagnosed with celiac disease may be wondering why people without a diagnosis decide to go on a gluten-free diet.  Sometimes it can seem like it is a fad.  This can diminish the perception of the disease among the public.  For people diagnosed with celiac disease the diet is mandatory and cross-contamination is a serious matter.

Why get a definitive diagnosis of Celiac Disease? November 15, 2008

Some people are diagnosing themselves with celiac disease. It is important to get a definitive diagnosis. If you have already begun the gluten free diet the tests for celiac disease will be negative so don’t start the diet until you have been diagnosed.

Why?

This information is from the Gluten Intolerance Group.

People that have celiac disease or dermatitis herpetiformis are at greater risk than the general population for developing one or more of the associated autoimmune diseases listed below:

• Addison’s Disease
• Autoimmune Chrinic Active Hepatitis
• Insulin Dependent Diabetes Mellitus (Type 1)
• Myasthenia Gravis
• Pernicious Anemia
• Raynaud’s Phenomenon
• Scleroderma
• Sjogren’s Syndrome
• Systemic Lupus Erythematosus
• Thyroid Disease
• Grave’s Disease
• Hashimoto’s Disease

These disorders hare common genetic and immunological linkages with CD and DH.  Although these conditions are not directly a result of having CD or DH, the tendency to develop associated immune diseases is higher in persons with celiac disease and dermatitis herpetiformis.  The tendency to develop autoimmune diseases is believed to be genetically influenced.

In an autoimmune disorder, the cells of the immune system produce antibodies and other cellular products that begin to react against normal, healthy tissue, causing inflammation and damage.

This is not a complete listing of autoimmune diseases associated with CD and DH.  Anyone who has unexplained, persistent, or recurring symptoms should consult a qualified physician for an evaluation.

This information is from a pamphlet from the Gluten Intolerance Group:

31214 124th Ave SE
Auburn, WA 98092-3667
Phone: 253-833-6655
Fax: 253-833-6675

Yogi Tea – gluten free information November 12, 2008

I bought some Yogi Tea the other day.  When I got it home I re-read the ingredients and noticed that under Other Ingredients they listed Natural Coconut Flavor and Natural Butterscotch Flavor.  There was no indication of what the flavors were made from.  I went to their Website and found:

Natural Flavors Natural flavors are derived from natural sources such as spices, fruit, herbs, roots, or many other plants or foods, whose significant function in food is flavoring.

Of course, this isn’t enough information to find out if the food includes gluten.  I emailed the company and received a prompt reply, within couple of hours:

Dear Kathy:  

 Thank you for the email.   There is no gluten in any of the natural flavors.  Four teas contain barley malt.  They are the Fasting Tea, Calming Tea, Stomach Ease Tea and the Kava Stress Relief Tea.   

Best wishes,   Valerie Crowley Customer Service Representative

Golden Temple, Peace Cereal, Yogi Tea

Phone:  1-800-285-6457 ext. 550

Websites:  www.peacecereal.com, www.yogitea.com www.whaguruchew.com

I hope this information will help someone else wondering about the ingredients in Yogi Tea.  I like their teas.

Celiac Amy Begley Yoder in Olympics 10,000 meter track race August 17, 2008

I found out this morning, just after I had watched the 10,000 meter race, that one of our U.S. runners has celiac disease.  Iron Celiac posted the information.  Amy Begley Yoder won 3rd in the Olympic qualifying race in June.  She ended up placing 26th in the Olympic race.  You can see an article here and see Amy’s journal about her Olympic experience on her website.

What a great motivation it is for all celiac athletes to have a runner make it to the Olympics. Way to go, Amy! Thanks for bringing celiac disease to the sports world and showing it is possible to excel even with a gluten free diet.

Thanks to Iron Celiac for bringing Amy to our attention! His blog has been one of my links for months.

By the way, I finished the Sawtooth Century yesterday! 100 miles which included climbing Galena summit twice. I used Hammer products for fuel: Heed, Perpetuem, Endurolytes and gels. I felt great and had a good ride. Hammer was a sponsor of the ride and we got Recoverite and Endurolytes in our race bag. Heed and some gels were also available at the rest stops.

More on my California trip and staying vigilant July 9, 2008

I reported that I had eaten some oatmeal at the hotel breakfast buffet.  I won’t do that again.  The more I think about it that was not a smart move.  I don’t know for sure if I had a reaction to the oatmeal but I haven’t been feeling well.  I remember that the enterologist who did my biopsy told me if you do get some gluten it will affect you for 2 weeks.  That oatmeal was not worth the risk. 

The lesson is that I need to be sure to be prepared.  That is the key to successful and satisfactory travel while staying on your gluten free diet.  If I had some of my instant quinoa cereal with me, or some rice cakes, I wouldn’t have been tempted to try the oatmeal.

I forgot to mention that while we were in the Monterey area we went to the Central Avenue Bakery in Pacific Grove for lunch.  They had gluten free bread and we had a good sandwich which is always a real treat for a celiac.  They also had some gluten free desserts ~ cookies and cake ~ but we were too full from the sandwich to try them.

My Gluten-free trip to California July 5, 2008

I visited central California last week for a wedding and a brief vacation. I met my son in Cupertino. He is from Maui and also has celiac disease.

As usual, since I was flying, I took some snacks with me. It is hard to find nutritious and gluten-free choices in airplanes and airports. I like Prana and Boomi bars:

 

 

The first night I went to dinner with a large group of friends to a restaurant in Los Gatos, at Manresa. This is a very nice restaurant and the waiters were really helpful with my gluten free questions. I placed an order and after the waiter talked with the chef he returned and told me everything was gluten-free except the dessert and he listed the desserts that I could safely eat. (This was a restaurant that offers a 4 course dinner ~ you make on choice from their list of each course.) They also offer several small appetizers to the table before the 4 courses begin and one of them was a fried ravioli so they brought me another appetizer (shellfish) which was gluten-free. I would recommend this restaurant to anyone in the area whether they need to be gluten-free or not but I feel it is especially nice for a GF patron to be able to enjoy the delicious gourmet food with confidence.

The next night I ate a good dinner at Dio Deka which is a Greek restaurant in the Hotel Los Gatos. It was a nice Greek dinner which was prepared for a large group (a wedding rehearsal dinner). There were things which I couldn’t eat, of course. When the waiter learned I couldn’t eat the pita triangles with the hummus he brought me some freshly sliced cucumber which was greatly appreciated.

I had done some research ahead of time and found out about Dana from Gluten-free Gourmet from Book of Yum’s blog. Dana sells her goods at the Saratoga Farmers Market at 14000 Fruitvale Ave. in Saratoga on Saturdays from 9-1. We had the morning free so we found the market and bought some cherries and blueberries and then we found Dana. She had samples for us to try. We bought the carrot cake and a berry cobbler. The carrot cake was especially delicious and the cobbler was good, too. It is such fun to find something good to eat which you didn’t have to bake yourself. Dana was really friendly and surprised that we had come so far to find her!

We also went to a Whole Foods in Cupertino and found some gf granola, an apple pie (which my son loved) and some other goodies. We don’t have a Whole Foods where I live so it was fun to check out their gf options.

In Monterey we noticed a Thai restaurant, Amarin. We loved our meal. We told the waitress we couldn’t eat gluten or regular soy sauce. We weren’t too worried and really enjoyed the curries we ordered. It is near the Monterey Aquarium.

I did a first since I’ve been diagnosed with CD. At the breakfast offering at the Hotel Valencia in San Jose – on Santana Row – I had a small bowl of the oatmeal. I did fine with it but I don’t know if I’ll do it again. Oatmeal still worries me a little. Do any of you eat oatmeal regularly?

Overall we had a great trip and enjoyed many wonderful gluten free meals and snacks. I’d say these areas in California are friendly for gluten-free travel.