A Summer to Remember
by: Alex 
For most kids, third grade is one of the easiest years in school, but not for me. I was just like every other kid, I loved to play with my friends, I had a family that loved me, but I was sick. Altogether I missed 36 days of school. My stomach felt like somebody was punching me from the inside. My head was burning almost as if a heater was constantly following me.
The sad part was that I was skinny and pale and never felt good.
Of course, my parents got worried and that is when the first doctor visit happened.
I stumbled into Room Two at Woodinville Pediatrics, I felt worried and sick, as usual. I can still remember the smell of the antibacterial soap and rubber gloves. The doctor strode in and did not know what was wrong, so he decided to draw my blood. It was a completely painful and terrifying experience because I was so dehydrated they could not find a vein. Ever since then, I have been completely terrified of getting my blood drawn. When the test results came back, I tested positive for Celiac Disease.
At the time I had no idea what that was and could not even pronounce the name. We discovered later that Celiac Disease is an autoimmune disorder that requires you to not eat gluten so you do not get stomach aches. To figure out if I really had Celiac Disease, we had to go see a specialist doctor.
On that summery day between third and fourth grade, I was terrified about what would happen. I staggered through the automatic sliding doors and considered everything that might happen. Children’s Hospital is made to look warm and cheery and happy, but all I felt was fear and nervousness.
The cedar brown elevator dinged as my mom and I reached the floor we were looking for. The waiting room was very large and jungle themed. Little kids were playing with the toys but I just sat there and watched my mom fill out paperwork the receptionist gave her. Finally, we were called in and I caught my first glimpse of Dr. Christi.
Dr. Christi was a short, old man that seemed very in-control of the situation. “Well ladies,” he said painfully slowly, “your doctor informed me you came here to find out what is wrong with Alexandra. The best way to find out if she has Celiac Disease is to have her blood drawn and for further reassurance, perform a biopsy of her small intestine.” He explained what would happen and we left.
When I ran out of what I still consider the torture chamber, my mom, who seemed rather stressed with what would happen, set up an appointment.
The dreaded day arrived and Suzanne, my youth group leader, my mom and I pulled into Children’s Hospital.
“Don’t worry honey everything will be fine,” said my mom comfortingly.
I was clutching my two new stuffed animal dogs while I angrily marched into the lab where they would draw my blood. The nurse started to clean off my arm and said annoyed, “Trust me you’ll be fine. I do this all day, every day.” That just freaked me out even more!
The time came and the nurse stuck a needle into my arm and instantly I started crying. Sadly, I looked at the three vials of blood they just forcefully drew from me. That is a sight I will never forget. I drank some disgusting liquid and waited for a whole hour for the next blood draw. The time came and luckily I had a nicer nurse.
“Just relax and breathe and look we are already done!”
I left the hospital feeling disgusted and upset but thankful I survived.
A few weeks later, I had to get an endoscopy which is when they stick a tube with a camera on it down your throat and take a fingerlike thing off your intestine. The day came and I was freaking out again. I told them I wanted root beer flavored “laughing gas” while I changed into my uncomfortable, ugly and unforgettable robe. I walked into the room and was even more nervous than before. Needles were everywhere and large machines filled the room. There were at least eight doctors and nurses in the room. I clung to my dad’s leg as they made me lay down on the bed.
“All you have to do is give me three big breaths and listen to the story I am going to tell you,” said the big scary doctor.
Suddenly I woke up in a room full of crying babies and a nurse asked me if I wanted juice or a popsicle. I refused to eat or drink because obviously the laughing gas was still in effect. They made me drink juice and sit in a silly wheel chair instead of walking. I tried to walk as I left the hospital but that did not work so well!
The test results came back the same day I broke my arm while I was playing at my neighbor’s house. My mom sat me down and told me I had Celiac Disease for sure and that I was not going to be able to eat gluten anymore. I felt like my world was crumbling right in front of me. Eventually, I realized my life was not ending, it was getting better. Through me we figured out my mom was allergic to dairy and gluten too. I still go in for check-ups every year with Dr. Christi, who I now tower over like a skyscraper towers over the streets below. Compared to back then, I am healthy, happy and hardly ever sick!
This Week on Facebook:
There was a lot going on this week. I posted about the following on my Facebook page:-
Photos Baking with the Gluten Free Teen
One of our Silver Linings of Celiac Disease is the time the GFT and I spend in the kitchen together. The Middle Child caught us in action with these photos, making a birthday cake.
Baking with the Gluten Free Teen
- A Letter to Congress Urging them to Amend the FALCPA to include Gluten
Anne sent me the following letter this week that she has sent to her local elected-by-the-people and paid for with your taxes representatives in Washington DC.
As a small part of Celiac Disease Awareness month, I am encouraging all of you to take a few minutes, modify the following letter as you see fit, and send it on to your elected official asking them to amend the FALCPA to include gluten, and/or barley and rye.
To Whom It May Concern:
My child was diagnosed with Celiac disease, an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, and rye.
More than two million people in the United States, or about 1 in 133 people have the disease. According to a study conducted by the Celiac Disease Center at Columbia University along with CIGNA HealthCare, the annual mean medical cost of an undiagnosed Celiac patient is $8500 per capita compared to $7100 for Celiac patients on a strict gluten free diet. Thus an adherence to a gluten-free diet could significantly reduce the overall medical cost on the health care system.
Living a gluten free diet is extremely challenging with the current FDA regulations on food labeling. The FALCPA (Food Allergen Labeling and Consumer Protection Act) requires that the eight most common allergens be declared in food products (eggs, milk, soy, peanuts, tree nuts, fish, shellfish and wheat). However, Celiac sufferers have to avoid rye & barley in addition to wheat.
I am requesting an amendment of the FALCPA to include gluten and/or barley and rye in the list of common allergens. This amendment will ensure that individuals, particularly parents of children with Celiac and others providing food to those children, can easily and accurately identify food products containing gluten ingredients. I am aware that the FDA is scheduled to make a final rule on the use of the term “gluten-free” on food labeling. However this new term is for voluntary use in the labeling of foods. The proposed amendment to the FALCPA will legally require the food companies to explicitly disclose the presence of wheat, rye and barley in their products, making it easier for Celiac sufferers and their caregivers to identify foods that are safe to eat. For people with Celiac, eating gluten will cause serious irritation and severe inflammation of their guts. For my child, avoiding gluten is not a choice, it is a medical necessity and a matter of survival.
SincerelyXXXX
www.contactingthecongress.org
Contacting the Congress is a very up-to-date database of congressional contact information for the 111th Congress. As of April 28, 2010 there are 537 email addresses (of which 533 are Web-based email homepages), and 537 WWW homepages known for the 540 members of the 111th Congress. ...
* GF Hamburger Helper and Bisquick mix:
These General Mills products will be debuting at the CDF conference May 15 in Los Angeles. The Hamburger Helper (several varieties) will be available in stores in early June, and the Bisquick mix in mid-July. General Mills already sells over 250 GF products and 100 GF recipes LiveGlutenFreely.com - Home www.liveglutenfreely.com
* Gluten Free Matchmaker Launch Party
Baking with the Gluten Free Teen
- A Letter to Congress Urging them to Amend the FALCPA to include Gluten
Anne sent me the following letter this week that she has sent to her local elected-by-the-people and paid for with your taxes representatives in Washington DC.
As a small part of Celiac Disease Awareness month, I am encouraging all of you to take a few minutes, modify the following letter as you see fit, and send it on to your elected official asking them to amend the FALCPA to include gluten, and/or barley and rye.
To Whom It May Concern:
My child was diagnosed with Celiac disease, an inherited, autoimmune disease in which the lining of the small intestine is damaged from eating gluten and other proteins found in wheat, barley, and rye.
More than two million people in the United States, or about 1 in 133 people have the disease. According to a study conducted by the Celiac Disease Center at Columbia University along with CIGNA HealthCare, the annual mean medical cost of an undiagnosed Celiac patient is $8500 per capita compared to $7100 for Celiac patients on a strict gluten free diet. Thus an adherence to a gluten-free diet could significantly reduce the overall medical cost on the health care system.
Living a gluten free diet is extremely challenging with the current FDA regulations on food labeling. The FALCPA (Food Allergen Labeling and Consumer Protection Act) requires that the eight most common allergens be declared in food products (eggs, milk, soy, peanuts, tree nuts, fish, shellfish and wheat). However, Celiac sufferers have to avoid rye & barley in addition to wheat.
I am requesting an amendment of the FALCPA to include gluten and/or barley and rye in the list of common allergens. This amendment will ensure that individuals, particularly parents of children with Celiac and others providing food to those children, can easily and accurately identify food products containing gluten ingredients. I am aware that the FDA is scheduled to make a final rule on the use of the term “gluten-free” on food labeling. However this new term is for voluntary use in the labeling of foods. The proposed amendment to the FALCPA will legally require the food companies to explicitly disclose the presence of wheat, rye and barley in their products, making it easier for Celiac sufferers and their caregivers to identify foods that are safe to eat. For people with Celiac, eating gluten will cause serious irritation and severe inflammation of their guts. For my child, avoiding gluten is not a choice, it is a medical necessity and a matter of survival.
SincerelyXXXX
www.contactingthecongress.org
Contacting the Congress is a very up-to-date database of congressional contact information for the 111th Congress. As of April 28, 2010 there are 537 email addresses (of which 533 are Web-based email homepages), and 537 WWW homepages known for the 540 members of the 111th Congress. ...
* GF Hamburger Helper and Bisquick mix:
These General Mills products will be debuting at the CDF conference May 15 in Los Angeles. The Hamburger Helper (several varieties) will be available in stores in early June, and the Bisquick mix in mid-July. General Mills already sells over 250 GF products and 100 GF recipes LiveGlutenFreely.com - Home www.liveglutenfreely.com
* Gluten Free Matchmaker Launch Party
Date: Saturday, May 15, 2010
Time: 5:00pm - 7:00pm
Location: 10003 Greenwood Ave. N. Seattle
DescriptionGluten-Free Matchmaker Launches in Seattle-
The Gluten-Free market has been traditionally under served in all areas. The Gluten-Free Matchmaker was started in an effort to remedy part of this, focusing on pairing the gluten-free and those who understand the lifestyle and its challenges.
Cooking at home, going out to eat, and fostering healthy relationships can be a difficult set of tasks under the best circumstances. The gluten-free can find it exceptionally frustrating when food allergies add another level of stress.
The Gluten-Free Matchmaker is more than a dating service for the wheat and gluten intolerant. It is a lifestyle service. More than just pairing the seemingly compatible, it offers an array of services: Cooking classes, singles mixers, relationship advice, and more.
The Gluten-Free Matchmaker launches on Saturday May 15th , 5:00 p.m. at Wheatless in Seattle. Champagne and food will be provided. People can show up, meet new friends and have some fun.
Sponsored by Wheatless in SeattlePartners: Kaili McIntyre, Paul Sharp, And Jodie Foucault
Contact:Kaili McIntyre wheatlessinseattle@yahoo.com
Ph: 206.782.5735
- A French Website for Gluten Free Recipes
I am always trying to find ways to spice up our gluten free life. Today I came across (actually they found me) this French website that has gluten free recipes. Unless you are fluent in French, you can translate with Bing or Google.
I am not really sure that I am up for Lemon Butter Furrow Wing, but it is fun to see how different cultures eat gluten free. And, oh do I love Paris! I will be posting about our trip to this magical city in a week or two.
Bon jour!
Les recettes de la Cuillère - Recettes avec Sans gluten www.lacuillere.com
* Northwest Gluten Free Summit
Join us in Corvallis, Oregon as we meet for the Northwest Gluten Free Summit being held November 5-6, 2010.
Currently it is estimated that 1 out of 100 Americans has celiac disease. Of these, only 3% have been diagnosed. With over 300 associated signs and symptoms and without a clear, accurate diagnosis, celiac disease and gluten intolerance often go undiagnosed. Raising awareness of celiac disease is imperative in order to ensure optimum health for the approximately 3 million people estimated to be suffering from the disorder.
The North West Gluten Free Summit will offer an educational environment where health care professionals, patients, manufacturers, private business owners, chefs, food suppliers and families can collaborate to learn more about Celiac Disease and Gluten Intolerance directly from the experts.
REGISTRATION NOW OPEN!!!!
Find more information about at NWGlutenFreeSummit.com.
- A French Website for Gluten Free Recipes
I am always trying to find ways to spice up our gluten free life. Today I came across (actually they found me) this French website that has gluten free recipes. Unless you are fluent in French, you can translate with Bing or Google.
I am not really sure that I am up for Lemon Butter Furrow Wing, but it is fun to see how different cultures eat gluten free. And, oh do I love Paris! I will be posting about our trip to this magical city in a week or two.
Bon jour!
Les recettes de la Cuillère - Recettes avec Sans gluten www.lacuillere.com
* Northwest Gluten Free Summit
Join us in Corvallis, Oregon as we meet for the Northwest Gluten Free Summit being held November 5-6, 2010.
Currently it is estimated that 1 out of 100 Americans has celiac disease. Of these, only 3% have been diagnosed. With over 300 associated signs and symptoms and without a clear, accurate diagnosis, celiac disease and gluten intolerance often go undiagnosed. Raising awareness of celiac disease is imperative in order to ensure optimum health for the approximately 3 million people estimated to be suffering from the disorder.
The North West Gluten Free Summit will offer an educational environment where health care professionals, patients, manufacturers, private business owners, chefs, food suppliers and families can collaborate to learn more about Celiac Disease and Gluten Intolerance directly from the experts.
REGISTRATION NOW OPEN!!!!
Find more information about at NWGlutenFreeSummit.com.
Gluten Free Mom on Facebook
