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Below is an important letter by Cleo Libonati, celiac disease author and speaker. She explains why you must be your own health advocate if you wish to be healthy and receive optimal care.
Dear Friend,
For the past three years, I have met with HMOs, pharmaceutical companies, politicians, doctors, dietitians, celiac support groups, and patients across the United States. One thing is abundantly clear. Doctors are not recognizing celiac disease and do not realize how little they know about the disorder.
In 2004, the National Institutes of Health called for education of physicians and other healthcare providers about celiac disease. To date, few efforts have been undertaken and none has succeeded.
The result is missed diagnoses, inadequate follow-up, unnecessary surgeries, improperly prescribed medications and needless pain. During my presentations, I meet many people who think they are receiving good treatment and cannot understand why no one has told them their persisting symptoms are due to simple nutrient deficiencies. Most do not even realize how sick they are or that their physicians could help them if they had access to the proper information.
This widespread suffering will continue as the public focus shifts from celiac disease to the gluten-free diet fad. You can see this shift already as new products flood the market and the news media reports on “gluten allergies” and “losing weight on the gluten-free diet.” As in Europe and Australia, the money that should go toward research and education of patients and physicians will instead go to advertising gluten-free foods and services.
You must be your own health advocate if you want to get well and stay healthy. You need a firm understanding of gluten, celiac disease, the symptoms they cause both before and after diagnosis and how to correct them. Armed with this information, you can self-manage your health and help your doctor give you optimal care.
I wrote to meet the call by the NIH for better education. It contains the combined knowledge from medical studies and research from around the world in an easy-to-use format to help patients and health professionals understand gluten, celiac disease, the hundreds of symptoms they cause and which nutrient deficiencies to correct to get better. Many patients have told me they shared their copies with their doctors who report it “connects the dots” and simplifies the disorder for them.
I encourage you to get a copy for yourself and for your doctor so he or she will fully understand this condition and improve your care.
Please visit the Recognizing Celiac Disease website at and be sure to see the scores of letters from patients and health professionals who are benefiting from this important resource.
If you already have Recognizing Celiac Disease, please pass this message to others who you feel this information can help. Thank you.
Best of Health,
Cleo Libonati, RN, BSN
Author, Recognizing Celiac Disease
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Author Information: John Libonati, Philadelphia, PA
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached by e-mail here.
I think it’s appalling that doctors aren’t more up to date on coeliac disease. It took 10 months & 3 doctors (plus A LOT of persistence) to finally get a diagnosis. I was told by one GP that it couldn’t possibly be coeliac disease cos you’re born with it. I’ve been tested for IBS (took TWO medications that didnt work for that), gallstones, acid reflux (twice). Have had ultrasounds, blood tests, stool samples etc. They need to be educated.