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Jane's Story

 
11/17/2008

Jane's Story

The doctor and dietitian merely said, “The cure for your illness is a diet of no wheat, oats, rye and barley.” I was given a small booklet from a dietitian at Yale New Haven Hospital that listed foods to avoid. That day changed my life.

My youngest son was born in October, 1964. During the next two months I lost 22 pounds, had severe bouts of diarrhea and felt weak. After three months of outpatient treatment, my internist had me hospitalized for tests. I was told what my diagnosis was two weeks later: “Your condition is all emotional – you will have to visit a psychiatrist”. However, by some miracle just before I was ready to leave the hospital, I was referred to Dr. Howard Spiro and Dr. Henry Binder, gastroenterologists at Yale.

They both entered my room together! They suggested that I have an endoscopy to determine whether I had intestinal damage. The next day, after that was completed, I was diagnosed with celiac disease and told to adhere to the gluten-free diet.

Dr. Howard Spiro stated that my attitude would make a big difference in my recovery. I will always remember that. I saw him at a Yale function recently and he said, “If I told you that 39 years ago, I would emphasize the same thing today – only be more emphatic about it”. Dr. Spiro has recently written a book called, “The Power of Hope” based on his observances over 40 years of being a doctor. I will always be thankful to Dr. Howard Spiro and Dr. Henry Binder for diagnosing me with celiac at a time when there was not much celiac being diagnosed. I am also thankful for the good advice from Dr. Spiro that I will always cherish! I have passed it on to many new celiacs since I have been involved in helping celiacs.

Immediately I started feeling well on the gluten-free diet. My weight continued to improve and I have been gaining weight ever since. (Unfortunately) The follow-up endoscopy that was done six months later showed improvement in the intestines, which confirmed the diagnosis.

My initial diet was plain meat, potatoes, vegetables, rice and fruit. Because I came from a family where that was standard fare, I didn’t mind at all. I was given a recipe for corn muffins and I managed very well without a lot of baked goods. There was no need to visit a health food store at the time. There was no gluten-free food worth eating. Also no cookbooks except for Marion Wood’s Cookbook. There were not even rice cakes!!

How did I feel about my diagnosis? I was extremely grateful to be able to take care of my three sons (3 months, 4 years and 8 years old). My parents and my family suspected that my diagnosis would be cancer and were so relieved to know I did not have cancer. (So was I!)

On diagnosis, I begged Dr. Spiro to talk with another diagnosed celiac. He was reluctant, but said he had about 12 patients in the New Haven area with celiac disease and he finally let me talk to one 83 year old celiac woman from New London, who told me that her own mother died thinking that her daughter was a hypochondriac. I immediately counted my blessings that I had been diagnosed.

Adjusting was lonely at times. Some celiacs feel misunderstood and deprived initially. However, my husband and family understood and that helped tremendously. I have come to the conclusion that your family is the best support system you can ever have! Some very good friends were extremely helpful, making all kinds of delicious recipes for desserts that I could tolerate. I found it hard to explain to casual friends that I had a food intolerance, and usually ended up saying, “I am allergic to wheat”, which most people could understand. I still advise celiacs to do that to avoid lengthy explanations to acquaintances. (Families get different treatment.)

About 6 years ago, an internist challenged me about my being a celiac because I look so healthy. Many doctors think all celiacs should look emaciated and “wasted away”. This internist insisted that I send for a copy of my original biopsy, which was done at Yale New Hospital, because he questioned my diagnosis. When the copy of the biopsy arrived, he was astounded to find that I was correct. (This was a doctor who had written a book on heart disease and I considered a very well established doctor.) Therefore, I urge all celiacs to get a copy of their biopsy (or diagnosis) immediately after it is made and keep it for verification. When you stay on the diet and your villi are healed, there is no way to prove you have celiac unless you go off the diet and are re-tested.

I am extremely grateful that I was diagnosed early, as I can see that the people diagnosed later in life have a very poor quality of life with many more medical complications that I have had. The stories I still hear are astounding!

I find that being involved in a celiac support group is extremely beneficial, because in helping others it takes the focus off of focusing only on yourself!

I find the variety of gluten-free food to be very exciting, but still expensive. I hope that will change!

I feel pleased that so much celiac research is being done, which will make a better celiac world for my sons and my grandsons.

Eating out is still frustrating because I consider myself extremely careful and still get reactions, so I know restaurants don’t always keep their word.

Communion - I am Catholic and find that not being able to take Communion is something I don’t like, but have to live with. (very few people understand why I don’t go to Communion.)

Hidden Gluten - There is more hidden gluten in food than ever before and I find reading labels very frustrating. (We need better labeling laws.)

You know the problem. Now be the solution.

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