Peter H.R. Green - Celiac Disease

Check each of the symptoms that you have experienced at least once a week during the past three months:

___ Bloating

___ Gas and/or stomach cramping

___ Diarrhea or runny stools

___ Constipation

___ Joint pain

___ Numbness or tingling in your extremities

___ Itchy skin lesions

___ Constant unexplained fatigue

___ Frequent headaches or migraines

Check if you have had or been diagnosed with any of the following:

___ Irritable bowel syndrome

___ Eczema or unexplained contact dermatitis

___ Fibromyalgia

___ Chronic fatigue syndrome

___ Nervous stomach (non-ulcer dyspepsia)

Check if you have any of the following:

___ Lactose intolerance

___ Osteopenia and/or osteoporosis

___ Autoimmune disorders

___ Thyroid disease (hypo/hyper)

___ Diabetes mellitus (type 1)

___ Sjgrens syndrome

___ Chronic liver disease

___ An immediate family member with an autoimmune condition

___ Peripheral neuropathy

___ Non-Hodgkins lymphoma

___ Small intestinal cancer

___ Psychiatric disorders or depression

___ Anemia (iron deficiency)

___ Infertility

If you have checked one or more lines in either Section I or II and have any of the illnesses in Section III (especially males or women under forty-five with osteopenia and/or osteoporosis), you should consider testing for celiac disease. If you have checks in all three sections, you and your doctor(s) should definitely explore a diagnosis of celiac disease.

All of the symptoms in Section I, all of the diagnoses in Section II, and all of the associated illnesses in Section III are intimately related to celiac disease. One in every 100 people in the United States is affected by celiac diseaseand about 50 percent of them are undiagnosed!

This book evolved from the combination of two sometimes diverse perspectives: that of the doctor and the patient. It incorporates an understanding of both the science and the experience of an illnessand the collective knowledge we both have acquired in the process. This revised fourth edition reflects the current developments in a rapidly changing field.

We would like to thank everyone we have worked and collaborated with over the past number of years, but some deserve a special mention.

I appreciate the frequent interactions with my colleagues in the Celiac Disease Center at Columbia University, especially Amy DeFelice, Ben Lebwohl, Suneeta Krishnareddy, Suzanne Lewis, Anne Lee, Jessica Lebovits, Cynthia Beckman, Govind Bhagat, Ed Ciaccio, and Randi Wolf.

Peter Green, M.D.

There are many people who educated me about celiac disease and dermatitis herpetiformisas well as how to live well with a chronic illness. I am particularly indebted to the many medical professionals, patients, students, and friends who shared their stories that shaped the narratives about living with celiac disease that resonate throughout this book.

As always, my family deserve the deepest thanks for their endless patience and humor, without which nothing would be possible.

Rory Jones

We both want to express special thanks to:

Jennifer Civiletto, our editor, who graciously and tirelessly supplied encouragement and professional guidance; Faith Hamlin, our agent, who championed the book even before she knew that some of her best friends had celiac disease; and Cathy Hemming, whose vision made it possible.

Finally, we want to thank the many patients who so generously gave us their time and shared their insights. This book is for you and the many people living with celiac disease and those making the long journey to diagnosis.

The Celiac Disease Center at Columbia University is one of the few leading centers in the United States that provides comprehensive medical care, including nutritional counseling, for adult and pediatric patients with celiac disease. Its mission is to redefine the future of celiac disease and treatment through continuing advances in research, patient care, and physician and public education. The Center is diagnosing and treating more than two thousand patients annually from around the world. In its nineteen years of operation, the Center owes much to the generous individuals who have assisted us in fulfilling its goals.

All of the information in this book is based on current knowledge about the causes, manifestations, diagnosis, treatment, and consequences of celiac disease. It is derived from an in-depth analysis of current medical literature, extensive clinical experience, patient and professional interviews, as well as ongoing research into celiac disease and its many complications.

Other medical experts may have differing opinions and interpretations of the medical literature. Wherever pertinent, the authors have attempted to note conflicting points of view on key issues as well as topics that have not as yet been scientifically resolved.

Many of the peer review articles we have consulted may not be readily accessible to all readers. For this reason, we have not included footnotes for all medical facts and figures. Instead, we have listed good basic review articles and books for different subjects in the Appendices.

The personal stories and diagnoses throughout this book are based primarily on the patient population seen at the Celiac Disease Center at Columbia University. The population of the greater New York tristate area is very large and ethnically diverse. In addition, the patients who seek help at a major medical center may present with more severe and complex symptoms. We understand that this may or may not be typical of the celiac profile in any given city or region of the United States. Nevertheless, we feel that the cross section of patients chosen for this book reflects the face of celiac disease in the United States today.

Note: This book is not a self-diagnosis manual. It is intended to generate informed patients who know what questions to ask of their physicians and how to understand the answers.

My doctor kept treating my symptoms, but never figured out why my stomach was always upset. I started getting migraines and then joint pain and... well, you name it. I was a walking pharmacy and still felt lousy. (Marg, 47)

My daughter was always tired. It was a joke with her friendswheres Melshes asleep. She slept through classes in college... it affected her social life. We even did an overnight sleep study in the hospitalshe was sleeping fourteen to sixteen hours a day. (Roni)

My daughter had legs like pick-up sticks and an enormous belly and the pediatrician called it baby fat and said shed grow into it. (Mike, 40)

I think people thought I was a hypochondriacthere was so much wrong with me. (Heather, 43)

In the United States today, millions of patients suffer with symptoms that neither fit a specific diagnosis nor disappear. Young and old take drugs and see numerous specialists for gastrointestinal complaints, anemia, joint pain, itchy skin conditions, constant fatigue, or headaches. Their symptoms are treated, but no underlying cause can be found. One doctor diagnoses fibromyalgia, another chronic fatigue syndrome, a third irritable bowel syndrome. Too much or too little roughage, lactose or fructose intolerance, fried or spicy food explains repeated bouts of reflux, diarrhea, constipation, abdominal pain, and gas. Muscle strain or the wrong type of mattress is the excuse for aching joints or tingling extremities that remain asleep when the rest of you wakes up in the morning.