Autoimmune disease refers to a varied group of illnesses that can affect just about every organ system. The effects can be devastating, but the symptoms can be vague. Getting the right diagnosis can be as difficult as dealing with the disease.
Celebrities Lady Gaga, Jay Cutler, Kim Kardashian and Venus Williams have more than fame in common. They all suffer from an autoimmune disease. They a're among the estimated 50 million Americans dealing with these disorders that are on the rise. But even with growing awareness and celebrity stories they are diseases many still don't know about.
"We dont know what the factors are. We dont know if its something going on in the environment, if it's the foods we eat, activities, stress so that is still a big mystery," said Dr. Calvin Brown, rheumatologist, Northwestern Hospital.
An autoimmune disease occurs when your immune system essentially turns on your own healthy organs and attacks them. Autoimmunity affects females three times more than males.
"My whole life as long as I can remember my stomach hurt," said autoimmune celiac patient Colleen Gorman, 28.
Gorman spent years in pain. She says she was diagnosed with everything from anxiety to heartburn to irritable bowel syndrome to even being too skinny. After hearing about a friends diagnosis she insisted on being tested for celiac disease.
"After I had my stomach scoped, afterward she told me it was probably one of the worst stomachs she has seen and I pretty much will never be eating gluten again," said Gorman.
Celiac disease is a genetic autoimmune disorder that's getting a lot of attention now. Basically the body can't break down gluten, a substance found in wheat, rye and barley. That can leave a patient with symptoms of chronic diarrhea, fatigue, iron deficiency, anemia or mental fog.
Researchers at the University of Chicago Celiac Disease Center say there's no doubt this disorder is on the rise.
"We have a ways to go especially in terms of celiac disease in getting physicians to recognize that its not just that classic presentation in that there can be subtle signs and symptoms," said Dr. Sonia Kupfer, gastroenterologist, Universtiy of Chicago.
The list is massive, but other autoimmune diseases that can initially be hard to detect include lupus, rheumatoid arthritis, multiple sclerosis and thyroiditis. Those symptoms can include joint pain, weight gain, depression, hair loss numbness and heart palpitations -- vague, confusing symptoms that can run the gamut and make autoimmune diseases hard to diagnose.
One estimate is that on average these patients will visit four doctors over a four year period before getting a correct diagnosis.
Northwestern rheumatologist Calvin Brown says patients need to push physicians and keep a detailed account of what's going on with their body.
"It's putting together the right tests in conjunction with the story, the symptoms of the patient, and that is what ultimately leads to the diagnosis," said Dr. Brown.
Lesley Tone is a successful Chicago attorney who was already diagnosed with graves disease and arthritis. But she still had to keep pushing doctors to get her third diagnosis of Crohns.
"It took a couple doctors, two doctors and it took a lot of tests and this was not the diagnosis my first doctor expected at all," said Tone.
The right diagnosis and medication have Tone feeling much better.
As for Gorman, she's living life gluten free and thankful she didn't give up looking for an answer.
"Physically and mentally, I feel tons better. I sleep better. I eat better," said Gorman.
There are dozens of autoimmune diseases and doctors say they are getting better at recognizing them. And, of course, autoimmune disorders also affect many men. The hope is one day there could be a vaccine. The earlier the diseases are diagnosed and treated.. The faster damage to the body can be prevented.
American Autoimmune Related Diseases Association
22100 Gratiot Avenue
Eastpointe, MI 48021
Phone: 586-776-3900 Fax: 586-776-3903
June 2, 2012 Location: TBD
For information: 1-855-ADWALKS
The University of Chicago Celiac Disease Center
5841 S. Maryland Avenue, Suite C-470
Chicago, IL 60637
Northwestern Memorial Hospital