By Jamie Friedlander<\/p>\n
After spending six weeks in Guanajuato, Mexico in 2006, I returned home incredibly sick. I had sallow skin, dark circles under my eyes, severe fatigue, abdominal pain and more than anything, I had to run to the bathroom every 10 minutes. My parents took one look at me when I got off the plane and knew something was wrong.<\/p>\n
My pediatrician assumed I had contracted some sort of parasite in Mexico, but after months of testing, he was stumped. He sent me to a gastroenterologist, who specializes in diseases of the\u00a0digestive tract.\u00a0 But she \u00a0couldn\u2019t figure out what was wrong with me. I was still sick. I knew the doctors were worried because for several months (brace yourself) my stools were pale peach.<\/p>\n
And then one night I got an unexpected call from my gastroenterologist \u2013 she had made a mistake and overlooked blood test results from three months earlier. Though I needed an endoscopy (a scope down the digestive tract) to verify it, she said she was almost certain I had celiac disease.<\/p>\n
Celiac is an inherited autoimmune disorder that affects the small intestine. If someone with celiac ingests gluten \u2013 a protein found in wheat, barley, malt and rye \u2013 their immune system attacks the small intestine. This autoimmune response stops the body from absorbing nutrients.<\/p>\n
In some people with celiac disease, the smallest amount of gluten \u2013 such as a bread crumb the size of a grain of sea salt\u2013 can cause an autoimmune reaction in the body. In Mexico, my diet included 10 to 15 flour tortillas each day. The disease was so rarely diagnosed at the time of the endoscopy that the nurse gave me graham crackers when I woke up from the procedure.<\/p>\n
Around 1 in 133 Americans have celiac, or about 3 million people. That\u2019s roughly the population of Nevada.<\/p>\n
Of these 3 million people, around 83 percent are undiagnosed, according to the National Institutes of Health<\/a>.<\/p>\n \u201cTo me, there is one main, simple reason that explains most of this, and it is the fact that celiac disease often has minimal symptoms or no symptoms at all,\u201d said Dr. Stefano Guandalini, the founder and medical director of the University of Chicago Celiac Disease Center. Even when people are symptomatic, these symptoms aren\u2019t always gastrointestinal.<\/p>\n [field name=”celiac chart”]<\/p>\n Dr. Alessio Fasano, the director of the Center for Celiac Research at Massachusetts General Hospital, echoed Guandalini\u2019s sentiment.<\/p>\n \u201cYou are talking about a condition that can affect any tissue or organ with symptoms that are sometimes very vague and sometimes they\u2019re non-specific, and therefore they\u2019re struggling to look in the right direction,\u201d he said.<\/p>\n Fasano said, for example, someone with iron deficiency anemia, or a lack of healthy red blood cells due to low iron in the body, might see a hematologist and someone with joint pain might see a rheumatologist and if these specialists aren\u2019t aware of and screening for celiac disease, they can miss the diagnosis.<\/p>\n People come about their diagnoses in drastically different ways because the symptoms of celiac can be so vague. Though I had some of the more \u201cclassic\u201d symptoms of celiac disease (which are anemia, diarrhea and abdominal pain), there are more than 200 symptoms<\/a>. Steatorrhea, or the pale peach stools, is also a sign of celiac \u2013 it means the body cannot absorb any fat due to the damage in the small intestine.<\/p>\n More typical gastrointestinal symptoms include diarrhea, vomiting, abdominal pain and weight loss. Other symptoms can include neuropathy (numbness and pain in the hands and feet, which I experienced), tooth discoloration, mouth sores, tingling in the legs, anemia and severe fatigue. Some people also have dermatitis herpetiformis, a type of blistering skin rash. Emotional symptoms, such as anxiety and irritability, can also occur.<\/p>\n While children with undiagnosed celiac disease tend to have more \u201cclassic\u201d symptoms, one of the most common signs in adults is iron deficiency anemia that doesn\u2019t respond to iron treatment, a symptom that led to Diane McKiernan\u2019s diagnosis.<\/p>\n McKiernan, a research coordinator at the U of C celiac center, was plagued by iron-deficiency anemia throughout her childhood. In 2009, while McKiernan was in college, her physician finally referred her to a hematologist, who specializes in\u00a0blood disorders, \u00a0because she thought she might need iron injections. The hematologist then diagnosed her with celiac disease.<\/p>\n Oddly, some people with celiac disease don\u2019t show any symptoms. The U of C celiac center\u00a0reports the landmark prevalence study for the disease showed 60 percent of children and 41 percent of adults diagnosed during the study were asymptomatic. My twin brother Zach, now 25, was diagnosed with celiac in December 2014 and he showed no symptoms \u2013 he got tested because I have the disease.<\/p>\n