Celiac Awareness in Kansas City

Here is an article I received from St. Luke’s South Hospital in my hometown of Kansas City:

May is Celiac Disease Awareness Month

Celiac disease is an autoimmune disorder that is triggered by consuming the protein called gluten (found in wheat, barley, and rye). Three million Americans have celiac disease, but only 200,000 know that they have it! Celiac disease is hereditary; therefore, if you are diagnosed with it, your first- and second-degree relatives should be screened also.

Symptoms of the disease are diarrhea, abdominal pain, irritability, depression, bloating, gas, delayed growth, unexplained anemia, weight loss, headaches, constipation, thin bones, fatigue, joint pain, canker sores inside the mouth, itchy skin rash, discolored teeth, and others. The treatment for the disease is a life-long gluten-free diet.

During the month of May, Saint Luke’s South has activities planned to raise awareness and increase knowledge of celiac disease and how to live gluten-free. Click here for a list of activities — (information shown below). Celiac disease will also be featured at one of the SLS Family Health Festival booths June 4. For more information, contact Veronica Besch, Meda Bower, Barb Coyle, Renee Ilk, Ruth Kolb, Kelley Riley, or Trevor Thomas.

-Tri-fold Poster in the main lobby with flyers and disease information

-Information table in the cafeteria on May 17th

Gluten-free recipes and other handouts

Gluten-free food samples

Display of gluten-free food products

Chance to win T-shirts and other prizes

-Gluten-free entrée on May 17th featuring:

Pulled pork barbecue (with gluten-free bun and gluten-free sauces)

Sautéed fresh vegetables

Pasta salad (made with quinoa pasta)

Luscious lemonade cake – also gluten-free!

-Lunch and Learn (for SLS Staff) May 18th taught by:

Dr. Wendell Clarkston, Gastroenterology Physician, in the SLS Wellness Conference Room from Noon to 1:00pm.

This program will offer 1.0 CNE.  You can sign up on HealthStream or just show up that day.

-Listen for a SLS promotion on KMBZ.

It is very exciting to see this kind of celiac awareness being spread in Kansas City, especially among the medical community.  I am going to attend the lunch on the 17th!

Michelle’s Story: Diagnosed 30 years ago!

As a child I had many stomach issues.  From the time I was 2 until I was 3 I grew in height, but not in weight.  My parents tell me that they could hear my stomach making awful sounds and they knew that I was about to become sick.

I never really complained of stomach pain.  My stomach would bloat and become hardened.  The doctors 32 years ago didn’t really know what they were dealing with.  It was thought that I had crones for a while.  I tried various medicines.  I remember my mom crushing the pills and then giving it to me in a spoonful of jelly or applesauce.

I was hospitalized several times and remember waking up in the “cage” (bed) at the children’s hospital on Easter morning.  The Easter Bunny brought me a bunny that became the doctor’s other patient.  I would travel to various parts of the hospital with the IV in my arm and take a ride on the IV cart.  I remember having IVs in each arm and a leg at various visits.  My grandparents bought me a “Piggy” bank that would raise his hat each time a coin was placed into the slot.  If I didn’t fight and took my medicine with no problem, I received a penny for my pig.

There were several mornings that I remember being awoken at home to drink a glass of chocolate milk before my dad left for work.  This would be the last thing that I could eat or drink until after my “stomach” tests.  I remember being told to “swallow a silver jelly bean – these are the president’s favorite treat” that was attached to a tube.  While awake during the tests and I was told to turn this way or that.  I watched the jelly bean float through my stomach finally arriving at its destination, where a sample of my stomach lining was removed for testing.  I thought it was cool to see the inside of my stomach.

When it was finally discovered that I had celiac at age 4 there were very few options for me.  I no longer could eat foods that obviously had flour, wheat, rye, oats and barley (few knew what gluten was).  My mom would purchase small bags of expensive flour that was gluten free from a health food store.  She would make me bread – it smelled so good.  The bread was sliced, cooled and then frozen for later use.  Daily she would thaw /warm the bread in the toaster oven that we had (just for this purpose-the bread crumbled and burned in a regular toaster).  I never had spaghetti, sub-like sandwiches, Hostess treats (my dad even works for them) or pizza.  I would take my own brownies to birthday parties and then steal icing off of the cakes and add it to my brownies – again hoping they thawed all the way before it was time to eat.  Everything had to be frozen in order to keep.   I was limited to rice krispies cereal (any flavor though) or Frosted Flakes for breakfast.  This frustrated me when my brothers got marshmallows or to try other types of cereals. I always had the same type.   On some Sundays my dad and mom made pancakes.  My pancakes would rise higher than you can imagine.  They were the fluffiest and yummiest tasting treat!  I felt lucky then and only then to be GF.

I was the only kid in the entire school who had a doctor’s note, granting permission to bring her lunch.  30 years ago at the elementary school that I attended, it wasn’t an option, you had to buy lunch.  My mom was clever with my lunches though.  To this day-I love leftovers.  I would take a thermos with my version of spaghetti (rice mixed with spaghetti sauce), soups and the occasional PB and J sandwich.  Sandwiches weren’t a good option though, the bread just crumbled.  So I would have a ham and cheese roll with mayonnaise to hold it together.  Rice cakes were unflavored styrofoam that I tried to like but couldn’t.  Chips were fine, who would have thought I couldn’t eat Bugles – they are made of corn, right?  I ate foods that obviously were not made with gluten. I never thought about the other ingredients that could contain gluten (no one did).  Rice Krispies are made with rice, right?

The doctor’s tried an experiment for a year when I was 7, and I was allowed to eat everything and anything for one whole year.  When the year was over, the doctor’s took another biopsy of my stomach lining and confirmed that I was to stay away from flour because I had celiac.

1219057016I remember crying and feeling left out when there were foods I couldn’t eat.  The hardest was always on Christmas Eve.  Growing up, and still today, my family makes homemade raviolis for Christmas Eve dinner.  At the time I was the only one who couldn’t eat this.  I hated that.  Within the past 15 years more members of my family have been diagnosed with celiac.  We all still have homemade raviolis because GF flour is available.  The raviolis are tasty, and the GF flour is an easy substitute sold at a local GF bakery (something else that wasn’t available 17 years ago).  The bakery even sells pizza and gooey butter cake – a bad, but delicious discovery on my part.

I remember sneaking out with my uncle from a family gathering, to get ice cream, a treat that I could have.  Or going to the park with my grandpa just the two of us, so I felt special and not left out because I couldn’t eat the same dessert everyone else was eating.  I was a Girl Scout who couldn’t eat the cookies and the only kid at school who would have to know about birthday celebrations ahead of time, so I could bring my own treat.

I made the mistake of declaring myself well 17 years ago.  When I stopped following the diet, it was because there were no options or alternatives. Things were too hard…no one had substitutes, few had heard of celiac and once the gluten free flour sold at the health food store my mom used to purchase for me – by the way Thanks Mom!!, stopped selling the flour, my options became slim to none.

I had horrible eating habits because I would substitute what I couldn’t eat with bad alternatives. Salad dressings, barbeque sauces and ketchup were fine to eat.  Rarely were labels viewed since if it didn’t have bread or pasta it was considered GF – at least that was the mindset in the past.

I began to “cheat” my senior year in high school.  I never had “stomach” symptoms, so I was cured!!  However looking back now so much can be attributed to celiac; muscle cramps, chronic illnesses, migraines, and infertility …but it took one frightening migraine to put me back on track.

Now there are books for those who are gluten free dummies.  I have learned more in the past 3 years being back on the diet, than I knew before.  I never worried about Rice Krispies or which ketchup I used, however now I have to be aware of how malt is processed.  My students that have aspbergers (higher functioning persons with autism) are removing gluten from their diet and are having success.  My friends look out for me and I find that most restaurants are willing to learn about celiac if they are not already accommodating the diet restrictions.

I also learned more this past summer after experiencing a number of health problems, thought to be related to celiac, however discovering that they weren’t.  I was having chronic stomach pains.  I saw a GI specialist who ran tests and my regular doctor began running tests.  I had a colonoscopy, endoscopes and several other tests that show no damage to my system from cheating all those years. I even took the initiative to see an immunologist/allergist.  I learned many interesting pieces of information.

I am now taking calcium with Vit-D to help my immune system.  I teach, so any help is appreciated.  The calcium and the flu shot have truly helped me to avoid severe illnesses this year.  As many know, celiac is an auto-immune deficiency.  When persons who have auto-immune deficiencies become ill not only do they have to fight the illness, but they also have a longer road to recovery (I happen to have 3 auto-immune deficiencies).  This recovery can then allow them to become more susceptible to other illness, so it’s one step forward and two back for your immune system.  The only way to avoid this horrible cycle is to do all you can to build up your immune system.

I also learned that persons who have celiac can fall into one of two categories: those that are gluten intolerant or those that are allergic to gluten.  I fall under the first category; this is why I cheated for so long with little or no “symptoms”.  If a person is allergic to gluten the reaction to anything gluten tends to be more immediate, even foods that are cross-contaminated.  Those that are intolerant of gluten tend to have to build up the gluten in their systems before the symptoms become obvious.  This is why during all of my upper GI’s, endoscopes, blood work, etc.  This past summer, my GI doctor thought that I was falsely diagnosed.  I was told to eat gluten for 3 months.  I didn’t make it 3 weeks, the headaches were unbearable, but no stomach pains.  He ran the endoscope and confirmed what was told to me when I was 4, I definitely have celiac and to follow a GF diet.

Following the diet, while challenging at times, is so much easier than it was 17 years ago.  I don’t find it a burden and try to help others to not see it that way.  I feel better when I follow the diet and that’s what keeps me on track.

Today, I am a well adjusted, strong person who struggles with all the concessions society makes now for those that have food allergies.  While mine can’t have initial life threatening reactions, I wouldn’t expect, and never have, that others shouldn’t have what I am allergic to or that an entire separate meal should be made because I can’t have one thing that is being served.  The world never has nor will it ever revolve around me.  I hated being left out and different at times, but that never changed who I am.  Celiac was always a part of me.

People today are so very lucky (me included) to have the additional knowledge that we do.  I check labels, and my friends have chosen to as well.  I find substitutes that allow me treats that I never had until the last year.  Crackers and pretzels are wonderful treats!!  There are so many options available to people with celiac.  I have an allergy that is livable and one that doesn’t stop me from doing the normal everyday activities that others can do.  While no one wants to be different, I am so glad that I have something as simple as celiac.  I am grateful that there are so many options now compared to 30 years ago.  I am glad that there continues to be medical advances and blood tests that allow doctors to diagnose and treat celiac better today than ever.