Why is America way behind in celiac awareness? It probably has something to do with the fact that celiac disease is the only autoimmune disease that the government doesn’t support with research grants. Centers such as Dr. Green’s Celiac Disease Research Center are one-hundred percent dependent on charitable donations or university funds. Even though diagnosis is slightly up for celiac adults, this isn’t enough to raise awareness and bring relief for the three million people who suffer from celiac disease, nearly ninety-seven percent of whom don’t even know the cause of their painful symptoms. With increased diagnosis, we will surely see increased support, and soon the celiac community will be able to enjoy the same quality of life and food and cooking options which is enjoyed by, for instance, the lactose-intolerant community.

Tina Turbin

Dr. Peter Green, as many of you know, is the Director of the Celiac Disease Center at Columbia University Medical Center and one of the most outspoken and highly-respected professionals in his field.  Elizabeth Hasselbeck is a daytime talk show host who is well-known for her efforts to raise awareness about celiac.

I just thought I would forward to you a letter a wrote
and sent out to any and all CD research centers and organizations I
could! I guess if you read it, it tells it all, but I will briefly
recap for you.

We just got back form a road trip in which eating was
just way TOO hard! Mostly fruit and cheese ad nauseum—with the kids
eating a lot of candy. I guess I should have researched for weeks
before our trip to see what and where we could eat—but give me a
break. It shouldn’t be this hard! And my sister in law shouldn’t be
having SUCH a hard time getting a test for her daughter who is
suffering daily. Sheesh! I dont’ have much mobility in my life
right now—but I want to help. I want to help get the word out to
people, doctors and the nation—even the Govt so food companies start
complying too and there is MORE non-gluten filled food to eat in a
10,000 sq ft grocery store than just fruits and cheese!!! Katie

To Whom It May Concern,

I am writing this letter to you to perhaps get some commentary from you as
to the state of CD in the USA. I personally have CD, along with my
husband and 2 children. Conventional testing through the doctor’s
office didn’t tell us much. We started with the Prometheus Labs
complete celiac panel for my husband and daughter, who had the most
obvious symptoms. Our daughter’s blood work suggested Celiac, but
said HLA testing would basically confirm it. My husband’s blood test
was completely negative. Since we have no health insurance coverage
due to the cost as self employed persons, we decided to test further
with Enterolab for the whole family, including HLA testing. Those
results showed 3 of us with DQ8 and our son with DQ1. I know that
apparently this test is not verified among the standard medical
community, but it was the test that showed us clearly what was going on
with our bodies. After those results came back glaringly positive in
2005, our entire family went GF with COMPLETE resolution of ALL
symptoms! Complete resolution of joint aches and pains, bloody noses
in the kids, headaches, bone pain, GERD, gas, stomach pains, eye
problems, psoriasis patches, bloating, brain fog, extreme crankiness in
the kids. But apparently, we don’t actually have ‘verified’ Celiac
Disease because of our testing lab—even though going GF completely
resolved us of our symptoms and now inadvertently eating even minute
amounts of gluten can bring back those symptoms very severely!
Right now, my sister-in-law has a daughter who writhes every day with
stomachaches and constipation, is very cranky, has ‘asthma’ and just
says daily “I don’t feel good. I hurt everywhere.” Because our
daugher, her cousin, HAS CD and had the exact same symptoms that were
misdiagnosed with the same excuses for 13 years, I sent my
sister-in-law to our local clinic with the Prometheus testing
information printed out AND an informational sheet from University of
Chicago Celiac Disease Center about how important it is to get regular
testing in first degree relatives and to do DNA testing. To
date—-this child has had 3 stomach x-rays, has been ordered repeated
enemas but the clinic WILL NOT order the Prometheus testing and
apparently there is a question as to whether insurance will pay for
testing—especially the DNA testing!!! WHY?! Apparently, the
numbers of CD in this country are at about 1/100—–with only 3 of
those 100 diagnosed. WHY?! Why is there STILL so much
misinformation like “CD is extremely rare”, or “She can’t have CD
because it doesn’t show up until. the 40′s”. Why will my
sister-in-laws insurance pay for repeated x-rays, enemas, drugs but NOT
CD testing??? Why will the Doctors test for everything else BUT
CD??? What has to happen in this country to get the word out about CD
and how common it is—especially to doctors??   My family and I
just got back from a driving trip from Idaho to Palm Desert, CA. We
chose to drive because we can bring our food and appliances with us and
use them at our destination because finding hot GF food is VERY
difficult in the USA. In fact, in just about every single town these
days there are all the same strip malls with all the same chain
restaurants that serve pretty much 100% gluten filled foods—-without
any accomodation or understanding or knowledge of not only what GF
is—but how to safely prepare GF foods. It seems ridiculous to me
and my family that as we travel, we can eat only the foods we bring,
and when we run out of those foods the only truly safe foods for us are
cold fruits, veggies and cheese from a grocery store—even though
there may be 10 different restaurants with wonderful smells coming from
them right in front of our faces. Because we know that hurdle we face
trying to educate a manager or food server or cook staff quickly on how
to prepare food safely for us—-especially if they have never heard of
CD. So—on this trip we ate cold food most of the time and finally
took a chance at In N Out Burger, the only place that only has 1 source
of gluten—the buns. I’m pretty sure we all got glutented, but that
was the chance that we had to take to eat a hot meal!! The grocery
stores had NO GF selections and a health food store that we visited
that claimed they could do GF was sadly ignorant that GF isn’t the same
as Vegetarian. So—my question to you is WHAT do we have to do to
raise awareness for those of us dealing with CD?! WHAT is it going to
take to get the word out in this country that gluten in EVERY SINGLE
FOOD ITEM FROM THE FOOD ITSELF TO ALL SEASONINGS AND OTHER
INGREDIENTS is a BAD thing? WHAT is it going to take to get the
Medical Community to understand that gluten is everywhere making most
people sick? WHY is it so hard to get a definitive diagnosis—even
using the “Gold” Standard of biopsy and blood testing due to high false
negative numbers?? Why is there little to no knowledge or
understanding of gluten intolerance—-or even that there could
possibly be Gluten Spectrum Disorders along the lines of Autism
Spectrum Disorders in which doctors understand that before CD actually
occurs—it can start with gluten intolerance that becomes gradually
worse until the damage of CD is visible?? I am a wife and a mother
who is FED UP with ignorance and silence about CD. I want to help get
the word out, I want to advocate loudly and proudly about this
‘disease’ my family suffers from. We suffer because it is SO hard to
eat out and travel in the USA with a food disease—because American
food is all about gluten. I would like to get the opinion of you that
are working in this field as to how to change this and how to advocate
for something that most people still think is a Mental Illness or
Psychosomatic, especially if we are going to have National Health Care!
Thank you so much for taking the time to read this long letter. As
you can tell, I am frustrated and am looking for answers.

Katie Berry

What exactly is celiac disease then? It is an autoimmune disease caused by an allergic reaction to the component of wheat, barley, and rye, called gluten, which can affect the entire body. There are many painful symptoms which are confused for the symptoms of other diseases, and most doctors, uneducated in celiac disease, fail to diagnose it correctly.

Why is it that you and your doctors probably haven’t heard about celiac disease? Although the amount of research on celiac disease is growing, it depends entirely on the generosity of benefactors for its funding. Without these charitable donations, there would be no way to continue this research and the efforts to raise awareness. Out of the estimated fifty autoimmune diseases that have been discovered by doctors, it is the only one for which research isn’t supported by the U.S. government.

Despite the lack of funding, thanks to the hard work of celiac disease advocates, there has been some progress made in the fight to raise awareness. In 2003, an unofficial group of celiac community leaders came together to help persuade Congress to pass a law which would require food labels to include information about allergens. The Food Allergen Labeling and Consumer Protection Act was signed into law on August 3, 2004, greatly helping those who suffer from celiac disease or who are gluten-sensitive to shop for gluten-free groceries. When this was achieved, the need for a permanently established advocacy organization was seen, and this advocacy group became the American Celiac Disease Alliance (ACDA), which continues to this day to represent the celiac community to Congress.

Thus, strides have certainly been made in respect to helping the celiac community, but this isn’t good enough. After all, out of the three million Americans who are estimated to have the disease, only about three out of every hundred of them have been diagnosed. I am one of the lucky three who discovered the cause of the physical, and emotional, agony sufferers of celiac disease go through. I spent years going from doctor to doctor, getting test after test, trying a variety of suggested solutions, but with no answers and no relief. That’s when I began my own research. It was a long, hard road, and I’m determined that no one else have to follow it—if they’re even able to.

That’s why I support centers such as Columbia University’s Celiac Disease Center and the ACDA, but I’ll tell you something—they’re going to need more than just my own support. They need the advocacy and financial support of the government in order to end the suffering of three million of its citizens.

If you’re like most Americans, you probably haven’t even heard of celiac disease, an autoimmune disorder which causes an immune reaction that can affect the entire body, causing both physical and mental problems. The cause? An allergy to gluten, a component of wheat, barley, and rye.

The problem with celiac disease is that doctors don’t know much about it either. They don’t know that it affects an estimated 300 million Americans and that with a simple test, a diagnosis can be made and the easy treatment can begin—a gluten-free diet.

Many years ago, I found myself with many painful symptoms and without any answer to what the source was or how to treat it. I went in circles with doctors, nutritionists, and testing. Finally, I decided to do my own research. It became clear that the answer was an allergy to gluten. What became even clearer was how little doctors knew about celiac disease and the vast numbers of people suffering without a diagnosis and treatment.

An estimated 300 million Americans have celiac disease and only three percent of them know it. When I’m not working on the latest installment of my Danny the Dragon series or the Danny the Dragon Cookbook, I’m working hard to change this statistic by raising awareness and support for this disease that affects more people twice as many of those who suffer from Crohn’s disease, ulceric colitis, and cystic fibrosis combined.

Proceeds from the Danny the Dragon CD will go to the Celiac Disease Center at Columbia University Medical Center, one of the major research centers around studying and bringing awareness to celiac disease. It is one-hundred percent focused on studying celiac disease and carries out research connecting it with various other diseases which it is believed to lead to if left untreated. Its goal is to change the lives of celiac disease sufferers for the better around the world, a goal which it is actively achieving, little by little, every day.

Why is it that you and your doctors probably haven’t heard about celiac disease? Although the amount of research on celiac disease is growing, it depends entirely on the generosity of private benefactors for its funding. Without these charitable donations, there would be no way to continue this research and the efforts to raise awareness. Out of the estimated fifty autoimmune diseases that have been discovered by doctors, it is the only one which isn’t supported in its research by the U.S. government.

That’s why I support centers such as Columbia University’s Celiac Disease Center. Not only will my book delight Danny the Dragon fans, but it will help support a cause that has the potential to change the lives of millions of people for the better.     Tina Turbin

Please sign up for my Newsletter (click on link and scroll down the right side of the page) to stay on top of this.  The “project” details will be fully released by the end of October.

Click here to watch a  7-minute video interview with Dr Peter Green, the doctor I am 100% behind and will be on some radio interviews with across the world over the next many months! He is a delight and is the  TOP doctor truly helping strongly to encourage celiac awareness in the USA. Listen to him and his simplicity. I think you will agree he is wonderful man with a heart of gold to help. He too agrees many kids in the USA should NOT be on drugs and are terribly misdiagnosed! He is the Head of the Celiac Disease Center at Columbia University. 

Let’s raise awareness about the overwhelming amount of misdiagnosed and long undiagnosed children  and adults. Let’s get the word out about the effects celiac disease has on 1 out of every 100 person in the USA! Connect up with me and I will share with you what is happening to help this area. 

Again, watch this video and get yourself informed in just 7 minutes by an amazing man I respect with all my heart. Dr. Green has devoted his life to opening the eyes of Americans and intends to continue to raise awareness. He is CORRECTLY diagnosing an average of 2,400 people per year as he continues to research this disease and facts of gluten. 

Please ask any of your friends or associates who may be interested in this field to connect up with me. I have had 7 radio interviews on this subject alone in the past 2 months and scheduling an average of 2 per week at this point in time, and this is increasing.

Side Note: Pamela’s Products sponsors my monthly Gluten-Free cupcake party videos. This month we have one scheduled in Tampa Bay, Florida. If you are interested, just let us know. Space is limited.  This month’s theme will be Thanksgiving for the kids and families! FUN! All gluten-free of course. This too is to raise awareness for this disease and all videos promoted broadly.  

Thank you,

Tina Turbin

View a sample of our press coverage here at one of the many news sites that covered the event.

I’m so thankful to have been able to participate in such a fine event and performance.

More news to come about our upcoming projects for our Danny the Dragon DREAMS CD (audio version of my children’s book, profits of which are donated generously to Dr. Peter Green’s Celiac Disease Center at Columbia University Medical Center), as we are gearing up to launch an exciting promotional campaign.

Today is the big day and we’re absolutely thrilled to be a part of the Sesame Street Halloween Concert!

To have this opportunity to introduce my Danny the Dragon children’s series (new audiobook/CD entitled: Danny the Dragon DREAMs – profits from the CD are donated to Dr. Peter Green’s Celiac Disease Center at Columbia University Medical Center) and provide the audience a special sneak preview of our latest creation: Danny the Dragon Meets Jimmy on DVD, is such a pleasure.

If you haven’t already, be sure to read the Sesame Street Halloween Concert press release.

We are seeing great press coverage of this well-loved family event, which I am pleased to be a part of, and at which I will be promoting Celiac awareness. Click here and scroll halfway down to read a recent article about the concert.

As many of you know, I will be participating in the “Sesame Street Halloween” Concert (performed by the Pasadena City College Orchestra) at Pasadena City College on October 30th 2009, at which I will also be raising awareness about celiac.

At this point the excitement is indeed mounting as this is Pasadena City College’s biggest and most prestigious concert of the year!

Not only is this a big debut for my children’s book series Danny the Dragon, but this also marks the official release of the accompanying Danny the Dragon DREAMS CD and audiobook, profits of which are donated to Dr. Peter Green’s Celiac Disease Center at Columbia University Medical Center.  It is an honor to be able to work closely with such a reputable organization.

We will also be providing a sneak preview of the Danny the Dragon Meets Jimmy DVD with sign-language interpretation, profits of which go to the Blossom Montessori School for the Deaf.

Read the full press release here.