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The Bi-State Celiac Support Group (BSCSG) is a nonprofit 501(c)(3) organization whose membership is free.
Throughout the year we strive to create gluten sensitivity awareness in the St. Louis and Illinois communities. We organize speaking engagments presented by local doctors and registered dieticians. We offer support to newly diagnosed patients and sponsor cooking demonstrations.
We are a community of people of all ages, color, race and religions. We have one thing in common...we live happily gluten-free!
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Kahlert-Dolnick, Kate
Board President |
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I was diagnosed with Celiac Disease in the late 1950's at the age of one. Back then the doctors believed it was a disease that one would outgrow. Around the age of seven, gluten was re-introduced into my diet. I continued to have symptoms off and on, but nothing like when I had been a baby. During my teenage years the symptoms were reduced all the more. Doctors have noticed that during puberty, for reasons they do not know, some sufferers have fewer symptoms during that time frame.
After the birth of my son, twenty-nine years ago, I suffered from anemia, low weight, hypoglycemia, and a host of other maladies. He had been a large baby and I had hemorrhaged during his birth and had to be given two units of blood. I chalked up these health issues to a rough childbirth. However, I continued to suffer and tried what I thought was a gluten-free diet thinking maybe that "Celiac thing" had come back. I was not educated correctly on how to look for all sources of hidden gluten, so, of course, I continued to decline in health.
Finally, in 1995, I threw up my hands and went back to the doctor. Of course, they diagnosed me with Celiac Disease and that is when my quest for more knowledge on this disease began. Eating gluten-free was NEVER an issue for me. I felt better almost right away and was relieved that, by diet alone, I could feel so much better. Since that time, the diet has become easier, tastier, and less time-consuming. The new labeling laws and the increased availability of gluten-free foods have made it a piece of cake (GF of course).
Since then my baby sister, Martha, has also been diagnosed with Celiac Disease. She suffered for eighteen years with a diagnosis of Lactose Intolerance. After multiple miscarriages and many health complications she, too, was diagnosed correctly and is now living happily and healthily GF.
With the idea of raising awareness about Celiac Disease, a small group of us got together in 2001 and formed the Bi-State Celiac Support Group. Our mission was to raise awareness and to coordinate and manage an annual walk for Celiac. We planted our own money in 2002 to kick off our first Walk for Celiac in St. Louis.
I am happy to say two founding members are also still active in our Celiac community - Debbie Adams and Marian Wisnev. Nancy Kroll and Barbara Fehrenbach have moved on to pursue other activities but will always be remembered as helping to kick start the BSCSG.
In 2005 Carol Stolwyk and I served as BSCSG Co-Presidents. In 2006 I am the acting BSCSG Board President. I am proud of how much BSCSG has grown. I hope to see it continue to thrive. There is more work to do in terms of Celiac Disease education, awareness and how to live a healthy, happy and gluten-free life.
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King, Linda
Board Vice President |
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I joined the Bi-State Celiac Support Group Board in September 2006. Due to the fact that my family of five lives happily gluten (and casein free), I am motivated to help spread the word and raise awareness for celiac disease and gluten intolerance.
My husband was biopsy-diagnosed with celiac disease in 2001 a day before we were due to leave on vacation. At that time we had never heard the word gluten and had no idea how to begin living gluten-free. That particular vacation was interesting as we were stumbling around trying to understand our new lifestyle. Needless to say, the internet, celiac experts and recommended books became our teachers. In 2004 our three children were diagnosed with gluten sensitivity.
Our children have become gluten-free educators and advocates in the way they live gluten-free so well-adjusted. They are surrounded with terrific friends who accommodate them when possible and teachers who understand. We have extended family who go out of their way to eat gluten-free on all kinds of occassions. My children and my family have inspired me to go back to school for a second degree in dietetics so that I can help others live as happily and healthy gluten-free as our family is so fortunate to do.
Gluten-free way to be!
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Darter, Linda
Board Treasurer |
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I joined the Bi-State Celiac Support Group Board in September 2006 as Treasurer. I am from the Illinois side of the Bi-State.
Getting to know and meet other people with celiac disease and learning their stories of how long it took to be diagnosed has been interesting. Each person went through a unique set of circumstances before being diagnosed.
I was diagnosed in 1996. In 1989 I began seeing a doctor due to problems I was experiencing. Seven long years later a correct diagnosis was made after undergoing a biopsy. My symptoms were never like the "normal" celiac problems. Mine started out as neurological and I was originally diagnosed with MS. Because of numbness in my leg there were days I could not walk and my head felt as if it weighed 100 pounds. Along with all these problems, I suffered from depression. After three years my neurologist was still unable to conclusively say that I had MS. At times I think he just assumed I was nuts. Prozac was prescribed for my depression but that just made me sick. Over the years I had all kinds of different problems. Eventually the one symptom I had that was associated with celiac was anemia. That is when the biopsy was done and the correct celiac disease diagnosis was made.
In 1996 food label ingredients were misleading, therefore, my first diet was reduced to foods that were extremely safe. Within two weeks I was feeling much better. After one month my blood count was back to normal. I had started to become a different person. To me being diagnosed was a blessing. All I have to do is think back on how sick I was.
How lucky we are that eliminating certain foods will keep us healthy!
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Berger, Barb
Board Secretary |
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I didn't have any symptoms before being diagnosed. My celiac disease was found by accident during an endoscopy for another problem in 1995. My doctor tested for everything else possible. He put me on the gluten-free diet for six months and then did another endoscopy to determine that the villi had begun to heal. To my knowledge, no one else in my family has celiac disease, but my daughter has crohn's disease, another auto-immune disease.
I don't find difficulty living with celiac disease - mostly a loss of spontaneity. I need to think harder about where to eat and what to eat, especially while out and when in situations where I don't have a lot of control - weddings, group luncheons, pot-lucks, etc. That said, I haven't starved yet - I can be creative and find something to eat!
I am a member of the Bi-State Celiac Support Group Board and I have been a memeber of CSA/USA for ten years.
My best advice to newly-diagnosed celiacs is that it definitely gets easier - label reading, family awareness and, in general, managing the diet.
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Adams, Debbie
Board Member |
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I think I suffered with gluten issues nearly all of my life. As far back as I can remember, I was a skinny kid; a tall skinny kid. My parents and doctors were always trying to put weight on me.
I suffered from stomach aches. I had asthma and I was very shy. I look back and remember symptom after symptom, but I never considered myself a sickly person. I just thought it was all normal, sort of, because something within me knew that something was wrong.
My very best years were my late teens and my first two pregnancies. I look back and believe I was in a type of hormonal remission.
Symptoms continued to vary as I got older. When I was diagnosed with severe osteoporosis at age 38 my life started to take a turn. After two years of seeking answers for my osteoporosis and continued loss of bone density, I was fortunate to be seeing a physician at Washington University when a Celiac / Osteo study began. I was the first patient to test positive for Celiac in this study. I was THRILLED to finally have an answer.
Although I was excited to start the diet I also thought I would NEVER again be able to eat pizza, cake, bread, etc,. This was okay because I finally had an answer. However, two weeks into the diet I found myself feeling very sorry for myself; a bit of mourning, so to speak. But life went on, discoveries of new foods were made and after six months on the diet my doctors were astounded to discover a near 11% increase in my bone density. By this time, I had also discovered the many wonderful things I could bake. I literally cried with the first batch of very normal chocolate chip cookies that my family devoured before they had a chance to cool. It was something I didn't think I could ever do for my family again. The simple pleasures that are so often taken for granted are highlights in a person's life when they find their way back after being taken away.
I continued to feel better. I gained weight, until I actually had to start watching how much I ate for the first time in my life. My bruising decreased dramatically. My leg cramps disappeared. I slept significantly better. My energy increased and I exchanged the crabby mom for one that was more pleasant to be around.
Since being diagnosed, my son is also gluten free and makes a conscious decision every day to stay that way because he knows how gluten makes him feel. My dad and my sister are gluten free, as are two nieces.
I am passionate about Celiac Awareness and consider my diagnosis a true blessing. For each person who finds their answer with a correct diagnosis, there is a family and friends who benefit as well.
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Crabtree, Angela
Board Member |
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In February 2006, when I was diagnosed with Celiac Disease, waves of mixed emotions surrounded me. I felt relieved to have answers to life long ailments, but had questions about what Celiac Disease was and who else in my family had the condition but was unaware. My husband on the other hand was ecstatic knowing I was finally diagnosed with something after years of stomach issues and unexplained anemia. Doctors said it was a result of ulcers or stress and anxiety and some suggested I was a hypochondriac.
In my mid-twenties I started having a variety of aliments of hip and joint pain, and constant fatigue. After the birth of my daughter in October of 2003 I was not able to keep food down and was sick up to three times a day and losing weight as a result. Finally I was referred to a GI doctor and they suggested taking a biopsy of the intestine.
Once diagnosed the only path to get healthy would be to switch to a gluten-free lifestyle for the rest of my life (I didn't even get a final meal, which would have made me sick anyway). I educated myself on CD and eventually did not feel so overwhelmed at the scope of change required to feeling better. It was more than a simple diet change, it was a lifestyle change. I embraced this new lifestyle and connected with the Bi-State Celiac Support Group where I have received bountiful amounts of support from others similar to my condition. I do not know what I would have done without the support of this group. Within weeks I felt better, less fatigued and more energetic. Most of my ailments dissipated within 1 month of my diagnosis. My health is now measured with small victories; discovering new gluten free ways to cook old family recipes, finding CD friendly restaurant or receiving new support from family and friends. In January 2007, I was able to donate blood for the first time in my life.
I have become an advocate for gluten awareness and C.D. and enjoy educating people on my experiences and my new lifestyle.
I started attending meetings, social get-togethers and volunteering for every opportunity I could. When asked to participate on the BSSCG board, I jumped at the opportunity to be more effective in promoting CD gluten awareness, help this community grow and establish friends along every step of the way.
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Miller, Anne
Board Member, Registered Dietician |
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It seems that I have lived through a significant part of the natural history of celiac disease in the US. When I was first handed a few sheets of paper with instructions and some recipes for rice flour muffins (1979), celiac disease was thought to be uncommon (1 in 10,000) in most areas. Later I did read that it could be as much as 1 in 300 in parts of western Ireland. In seeking explanations of how or why, I could then say it was the luck of the Irish. Labeling of food was primitive - just a list of ingredients, including mysterious things such as flavorings and seasonings with no other description. Since January 1, 2006 labeling is much improved, but there are some important issues still being resolved such as a legal definition of gluten-free.
Since home computers were not known then and Google was not even on the horizon, the learning process was very individual. I used a standard recipe book and corn meal or corn flour to make whatever looked good. Cookies and cornbread were staples.
Over the years I slowly discovered national support groups, then local groups and other live humans with celiac disease. The first bread that I tasted that had good texture and flavor was in Australia, where we visited in 1996. It was even fresh baked. Many other countries have been ahead of the US in awareness, diagnosis, and availability of great
G-F food, but we are catching up.
Even though I have been a registered dietitian since 1986, explaining the concept of an autoimmune disorder that requires the exclusion of a huge list of common foods from bread to ice cream cones to graham crackers continues to be a challenge. The Bi-State Celiac Support Group has provided the wonderful experience of eating great food and having fun company without having to ask so many questions or provide explanations.
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Wisnev, Marian
Board Member |
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I am certain that I was born with Celiac Disease (CD). My folks took an enormous amount of pictures of me as they didn't expect me to live. In fact, I ended up with Rickets because I wasn't absorbing any vitamins or nutrients.
As in the majority of cases, I went into remission very early (perhaps 5-6 years old) and my CD didn't resurface until I was about 45 years old. This was the same time I was under stress from my husband's heart attack at age 49! From the age of 45 until my mid-60's I began to have occasional gastro-intestinal (GI) problems. I saw several GI doctors over that time span who routinely diagnosed me with Irritable Bowel Syndrome. In 1996 the GI problems peaked and I also had severe itching. Dermatologists were unable to identify the cause. Finally, my primary care doctor sent me to an oncologist/hematologist, Dr. Burton Needles, as my blood tests were off the charts. Upon examination and health history, Dr. Needles immediately suspected Celiac Disease! I thought that I was dying as did Dr. Needles who has since told me that I had no clue how sick I was.
This was wonderful news! I was told that I would be feeling better within weeks - no chemo and no surgery - just the gluten-free (GF) diet. Yes, after the first view visits to the grocery store, I came home and literally cried for 10 minutes. But that didn't last long. As I tell everyone, when you feel good, you can handle most anything! I was fortunate to be able to afford to buy GF bread. I took one step at a time. I learned to cook GF and then I learned to bake GF and then I mastered baking my own bread.
To date, I have been diagnosed for 10 years.
Although there were local support group meetings, I wanted to instant message. If I found an item labeled GF, I didn't want to wait another 2 months for the next meeting. With this in mind, I began St Louis Alerts in April 2003 so that the GF community could share shopping and dining experiences. In January 2004 I moved this group to Yahoo. I also am a founder of the Bi-State Celiac Support Group.
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Wright, Carolyn
Board Member |
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I was diagnosed with cerebral palsy at 10 months old and was limited in my physical activities. My lifetime of physical needs fostered a curiousity in medicine and the health food store. I laugh as I recall purchasing a gluten supplement advertised to help the bouts of constipation I was enduring because of my limited mobility.
In 1998 I was also diagnosed with congenital generalized seizers and therefore various medicines were prescribed. Six months after beginning these new medicines I noticed an unfriendly GI pattern begin to develop. I made note of these and informed the doctor as well so he could note possible reactions in other patients. Soon after it was clear that my villi were broken down. I began to learn that some of my favorite foods that contained either gluten or dairy were the cause of the GI problems that began to take hold.
I was far more fortunate than many of our members because I consulted an astute internist who made the correct diagnosis immediately. Not only that, I will always remain impressed with his query, "What have you been eating recently?" When I answered saying "Special K and Grape Nuts," I learned that "those cereals have the most gluten."
The doctor sent me to the lab where steatorrhea and malabsorption were confirmed, but he declined biopsy due to my seizure disorder.
I learned very slowly how to help myself because the dieticians I consulted had not dealt with this often. Education and fellowship within my collective St. Louis Celiac Groups: 1990-present helped most.
I think how we educate physicians and the public is key. Is the knowledge of possible CD triggers published often enough? Perhaps key features of the questionnaire used on the initial doctor visit would help both the patient and treating physician. I say this because of my experience: numerous childhood GI viruses, teen-20s respiratory viruses, surgeries, staph and entero bacter septicemia and stress. My family counts on the ways I cope--so boy, do you guys help me!
CD is not so hard because we can share e-mail posts and events. Everyone works so hard and we're a great bunch! I am thrilled to begin work and growth on the BSCSG Board. Thank you for the opportunity.
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