Stories of Hope

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For the celiac disease community, the greatest gift of all this season is to assure full recognition of celiac disease by the medical community with rapid diagnosis and treatment for the 2.5 million Americans still undiagnosed.  CDF provides hope and help to people with celiac disease and gluten sensitivity and their loved ones.

By investing in CDF, your donations, no matter the gift size, are being put to work now.  Visit our “2014 Year in Review  to see how CDF puts your dollars to work.

 

Chad – Undiagnosed for 5 years:

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If you’re reading this letter, then you have been affected in some way by celiac disease and/or a gluten-related disorder.  Whether you found the Celiac Disease Foundation due to yourself, a loved one, friend or colleague being diagnosed, I understand what you’ve been going through.

I’ve always felt that it’s incredibly beneficial to connect with others who share similar experiences.  So today, I’d like to share my diagnosis story with you, with the hope that you’ll join me in helping to prevent the needless suffering caused by undiagnosed celiac in millions of people in the U.S. and beyond.

My story begins at a time when information about celiac disease and eating gluten-free wasn’t at your fingertips; a time when you couldn’t ask Siri, “what’s celiac?” or “how to eat gluten-free” and get the answer read to you in your car, while your phone is also providing you with live traffic and weather updates.

The year was 1988 and I was just five years old.  I would wake up every single day with a horrific headache and agonizing stomach pain.  Most days, I would try to work through the pain and go to school, but there were many mornings where the pain was so severe that I simply couldn’t get out of bed.

Like most kids, I loved being outdoors and playing sports with friends, but when you’re that age, it’s hard for your friends to understand that you can’t play baseball or basketball with them because you aren’t feeling well.   Not to mention the fact that I was constantly picked last in sports due to my small stature, which I would later find out was a result of undiagnosed celiac.

Soon, the head and stomach pain took over my life – school, sports, friends and fun all became secondary as we desperately tried to figure out what was making me feel so sick.  This is when the seemingly infinite number of doctors visits began.

For the next two and a half years, I practically lived in doctors’ offices – something that no child should ever have to experience.  I was put through test after test and ultimately, misdiagnosed at every turn.  The fear of the unknown and frustration that came along with each misdiagnosis began to take its toll as my health continued to decline.

Finally, after visiting about 20 specialists throughout California and exhausting every resource that we had, a doctor described the symptoms of something called celiac disease and recommended that I get tested.  Sure enough, the biopsy results came back and I was diagnosed with celiac disease.  Although it was an exhausting and tiresome process, I was fortunate to get a concrete answer as to why I had felt so sick for so many years.

And that’s when we met Elaine Monarch, who would forever change my life.

Sure I was young, but I definitely remember meeting Elaine.  My first memories of her were of an incredibly generous, compassionate woman, who truly cared about my health and well-being.

Elaine helped us to understand celiac disease and what it meant to live a healthy gluten-free lifestyle.  Soon after meeting her, Elaine invited my mom and me to attend one of the first ever CDF education conferences, and I was in heaven!  My mom focused on all of the educational aspects and great speakers, while I ran around eating everything in sight!  After all, I had finally found a place where EVERYTHING WAS GLUTEN-FREE!  It was truly amazing, and something that I’ll never forget.

After the diagnosis, and with the help of my family, Elaine and CDF, I began to feel much better and started to feel like a normal, healthy kid again.  I then went on to play high school basketball and water polo and later graduated from USC.  Sadly, I lost touch with Elaine throughout these years.

Post college, I started a few online businesses in the gluten-free space and began to blog about living gluten-free in hopes that my story might help someone going through similar health issues.  Within a month of launching my first website, I received an email from Elaine that said, “Chad, is that you after all of these years?”

I was so glad to reconnect with someone who had such a positive impact on my life.

Elaine then invited me up to the CDF offices, where I was eventually asked to sit on the Board of Directors for the foundation.  Of course, I accepted the invitation with great enthusiasm.

So here we are 25 years after my diagnosis and first encounter with Elaine, and I am fortunate enough to see Elaine on a regular basis.  She’s still the same selfless, caring, and giving person that I remember when I was so young and I’m privileged to be able to now call this incredible mentor my friend.

Today, I’m writing to ask for your help as we at CDF prepare for a new year of raising celiac disease awareness.

I am hoping that I can count on you to show your commitment to the Celiac Disease Foundation with a charitable, tax-deductible contribution of $50 or more to support the breadth of our work in the coming year.

Your gift will be recognized as statement of appreciation for and celebration of the incredible vision and service of CDF’s Founder and now lifetime board member, Elaine Monarch.  In addition, your generous donation will be helping to prevent the needless suffering caused by undiagnosed celiac in over 2.5 million people in the U.S. and beyond, so that no one else will have to endure through years of pain before finding a diagnosis.

This year, CDF’s Board of Directors has generously offered to match the Gift of Hope donations. The Board $50,000 Challenge Match will add $1 to every $2 donated this year.  In other words, your gift of $50 is worth $75, $100 will be worth $150 or your $1,000 will be worth $1,500 to the Celiac Disease Foundation.  The Challenge Match will make your gift go that much further to end the suffering caused by celiac disease.

Your tax-deductible gift will have a lasting and immeasurable effect, as you join in the fight to diagnose, treat and find a cure for celiac disease and all gluten-related disorders.

Can I count on you to support this great cause?

Please visit celiac.org/hope to give your tax-deductible donation and to show your support for the Celiac Disease Foundation.

Thanks in advance for your generous donation and happy holidays to you and your family!

Caryn – Undiagnosed for 16 years:

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All of a sudden, they seem to be everywhere:  gluten-free options in grocery stores, restaurants, coffee bars, and even at the ballpark.  Please, don’t get me wrong…all of this is great.  What isn’t penetrating America’s consciousness, however, is the life-threatening implications of our ongoing failure to quickly and correctly diagnose and treat celiac disease.

This is what we, working together, must change.  I am writing to tell you why the Gift of Hope Challenge Match contribution that I recently made to Celiac Disease Foundation (CDF) this season is so important to me, and why I encourage you to join me and do the same.

My name is Caryn.  I am a 56 year-old woman living in Southern California. About 20 years ago, I started to struggle with chronic and severe stomach pain. Because I was active and loved to play tennis, I tried to ignore the pain. I told myself that it was nothing. The pain, however, was not to be ignored.  It persisted and I told my doctors. Every doctor I saw dismissed my complaints.  They looked me in the eye and told me that there was nothing wrong with me. None…I repeat…NONE of my doctors tested me for celiac disease. I was so frustrated, but since the doctors did not seem worried, I tried not to let myself worry.

My friends, however, saw my misery. As much as I tried to pretend that I was fine, it was obvious that I was not. Years ago, one friend suggested that I get tested for celiac disease. Of course, I did not listen. What was celiac disease? I knew nothing about it, so, by my calculation, I couldn’t have been affected by it.

Four years ago, I returned to the doctor with a severe pain on my right side. It turned out that a malignant tumor in my colon had led to a ruptured appendix. It was only with my cancer diagnosis that the doctors tested me for celiac disease. My blood test results were off the charts.  Here is the real horror: My doctors told me that if I had been diagnosed with celiac disease and treated years ago, I may never have gotten cancer. I recently had my second surgery, several rounds of chemotherapy and am now starting radiation – and it is possible that this could have all been prevented.

So to me this fight to increase the rate of diagnosis of celiac disease is deeply personal. I don’t want anyone else to have to go through this battle – being in pain without a diagnosis – only to end up with cancer like I did.

That is why I have made my tax-deductible contribution to this year’s Gift of Hope annual fund campaign.  I am especially excited about this year’s gift because CDF’s Board of Directors has generously offered to match our Gift of Hope donations. The Board’s $50,000 Challenge Match to each of us is this:  they will add $1 to every $2 donated this year.  In other words, your gift of $100 will be worth $150 to Celiac Disease Foundation or your $1,000 gift will be worth $1,500 and so on.  The Challenge Match will make your gift go that much further to end the suffering caused by celiac disease.

I regret to this day that I didn’t listen to my friend’s suggestion to be tested for celiac disease. The wonderful people at Celiac Disease Foundation were my only source of information when I received my diagnosis. I can assure you, they work tirelessly to stop the needless suffering that results because only 17% of individuals with celiac disease have been properly diagnosed. CDF has an ambitious but attainable goal to raise that number to 50% within five years. Even today, there are too many medical professionals who never even consider celiac disease when evaluating their patients. The lack of education has gone on for too long. With Celiac Disease Foundation at the forefront of celiac disease awareness and education, I feel comfortable knowing that advances are being made. 

I don’t know how long I suffered from celiac disease.  What I do know is that I saw many doctors for many years and that an early and correct diagnosis would have changed my life.

I know that our year-end contributions to CDF’s Gift of Hope campaign will change a life.  It will help stop the needless and potentially deadly suffering caused by undiagnosed celiac disease in millions upon millions of people.

Please, make your tax-deductible contribution to Celiac Disease Foundation’s Gift of Hope. Simply make a secure donation at celiac.org/hope.  If you personally have celiac disease, or if you know someone who does, you understand why we have a special responsibility to step up and make a difference. You and I can help put an end to this misery. With the $50,000 Gift of Hope Challenge Match, the time has never been better.

 

Kathy – Undiagnosed for 50 years:

My name is Kathy.  I am a 57 year-old woman living in Washington, DC.  For as long as I can remember, my skin has been a mess.  As a little girl, I used to lie next to my mother in my bed crying about the itchy blotches that covered my body.  I would scratch them so hard that I had to wear mittens to bed.  As a teenager, I would stay at home rather than go out with my friends.  I can remember being diagnosed with psoriasis, eczema, allergies, and even a bad case of anxiety.  Nothing helped.

As an adult, it only got worse.  My hair started to fall out. I spent months wrapped in gauze like a mummy.  I could sometimes peel off sections of my skin like plastic wrap.  My husband moved into the guest room because he said I kept him awake because I scratched loudly in my sleep.  I was frustrated, depressed, and very often angry.

After seeing almost every dermatologist in the city, and being on a daily regimen of steroids, I had had enough!  Finally, a friend recommended a doctor who looked at my skin and told me that he thought I had Dermatitis Herpetiformis, the skin form of celiac disease.  He recommended that I get tested.  I did.  I tested positive for celiac disease. After a few weeks on a gluten-free diet my skin began to heal.  My hair started growing back.  I am buying nice clothes for the first time in my life.  I am singing in a jazz band.  I am traveling and enjoying my life.

I have made my contribution to CDF’s annual Gift of Hope Campaign. I ask you to do the same.  You and I know better than anyone the consequences of undiagnosed celiac disease.  By supporting CDF generously and frequently, we can help spread the word among healthcare providers and patients to increase the currently abysmal testing rates for celiac disease. Together, we can help end the suffering of an estimated 2.5 million Americans who are currently undiagnosed.

 

Jana – Undiagnosed for 25 Years:

I  first learned about CDF shortly after being diagnosed with celiac disease. Unfortunately that diagnosis came after 25 years of illness, visits to dozens of doctors and innumerable misdiagnosis’.  I was shocked and, frankly, devastated to learn that such a simple solution — don’t eat gluten — could have prevented all those years I lost to being sick.  I wondered how many others where in my situation… and what I could do about it.

I wandered into CDF’s offices unannounced.  The founder Elaine Monarch was in and stopped everything to talk to me. Really… files sat unopened and phones went unanswered.  She shared her story and the stories of others who needlessly suffered for years without a diagnosis.  I felt a little less alone that day. That day I began to support CDF.  I urge you to do the same, right now.

I have made my contribution to CDF’s annual Gift of Hope Campaign. You and I know better than anyone the consequences of undiagnosed celiac disease.  Together, we can help spread the word among healthcare providers and consumers to increase the currently abysmal testing rates for celiac disease. Together, we can help end the suffering of an estimated 2.5 million Americans who are currently undiagnosed.

 

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