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.
