Click to hear Caryn tell her story



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  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.