Allie Peterson woke up with itching white spots covering both her legs. Stomach pains quickly developed after eating even the slightest bit of food. These were new and scary sensations. After two years of doctors’ appointments, blood tests, and frustration, the doctors finally diagnosed celiac disease.
An estimated 83 percent of Americans who have this condition are undiagnosed or misdiagnosed with other stomach pains, according to Beyond Celiac. With gluten-free diets on the rise, it is bringing more awareness to the condition and more people are getting diagnosed.
Celiac disease is a reaction by the immune system that is caused by eating gluten. It is a chronic disease with no cure yet, except for maintaining a gluten-free diet. It is important to be educated about the new gluten-free diet fad, the symptoms to look for and get tested for celiac disease.
A Gluten-Free Diet
The number of people now practicing a gluten free diet has sky rocketed in the last decade with 17 percent of Americans now saying they try to incorporate gluten-free foods into their diet, according to The Gluten-Free Agency.
People who want a healthier lifestyle think that this diet will give them just that. Those who are educated about this diet consider it to be a double-edged sword.
“The reason it has gained so much popularity is being a celebritized fad diet,” said Claire Baker, director of communications and new media for BeyondCeliac.org. “People don’t understand that swapping out a normal cookie for a gluten-free cookie won’t do much for them.”
Most find it healthier to cut out foods high in carbohydrates like bread and pasta, said Baker.
The actual gluten-free snacks are no better or sometimes worse for you than the normal gluten foods because added sugars and fats are used in place of the gluten fibers to act as a substitute said Baker.
“The reason I keep a gluten-free diet is because I wanted to cut carbs out of my diet to take the first step in a healthier direction,” said Samantha Smith, a student at College of DuPage in Naperville, Illinois. “It was beyond just trying to lose weight. It was a lifestyle change.”
The gluten-free diet has drawn attention that has positive aspects as well.
Bethany Schor, a young adult living with celiac disease, said that the growing gluten-free trend has increased the amount of gluten-free options in stores and restaurants and is easier for her to find something to eat.
“Since the gluten-free diet is getting more attention, celiac disease is usually mentioned in articles about the gluten-free fad diet. It is usually mentioned that the diagnoses have increased from 3% to 17%,” said Baker.
Even with awareness growing, it is still difficult for doctors to diagnose this disease.
Celiac Disease is Hard to Diagnose
The average time it takes to correctly diagnose is 6-10 years, according to the Celiac Disease Foundation.
“With over 300 symptoms that can affect every organ in your body, headaches, swelling, stomach aches, hair loss, it can be difficult for doctors to say exactly what is wrong,” said Talia Hassid, community coordinator for the Celiac Disease Foundation. It has been called the chameleon of diseases because it is hard to recognize right away.
However, the gluten-free fad diet on the rise in the last five years, is bringing more attention to this medical condition causing a rise in diagnoses’.
“When doctors go through school, there is very little material covering celiac disease. They must teach themselves on what it is and what to look for,” said Hassid.
The Celiac Disease Foundation (CDF) hosts a national conference and gluten-free EXPO in Los Angeles, Calif., every May the last few years to educate doctors further on this disease. The top celiac disease experts speak about the latest research and this year introduced CME programs for healthcare providers. This event hosted nearly 3,000 attendees this past year.
CDF representatives also visit hospitals in California for a few hours throughout the year to teach more about celiac disease.
With more doctors knowing the signs of celiac disease, it is important to get tested if you experience any of the symptoms. If someone is diagnosed with celiac disease, there is a one in ten chance that a direct family member has it as well.
After years of feeling constantly sick and doctor’s telling her it was in her head, Rachel Ornstein, a student at Roosevelt University, figured she would be sick the rest of her life without an answer. She gave it one last shot.
“I finally went to an integrated medicine doctor on a whim and she gave me the diagnosis,” said Ornstein. “Three days after starting a gluten-free diet my symptoms were gone and I felt incredible.”
Another factor as to why it does not get as much attention as it should because people cannot visually see the effects it is having on a person. The gluten-free diet fad also can take some of the seriousness of the disease, Hassid said.
The gluten test itself is fairly simple and quick if someone suspects that they may not be able to tolerate gluten. In order to get a quicker diagnosis, you must see a specialist to get these tests done. The person being tested must maintain a gluten diet to be able to find the necessary reactions during the tests.
Once tested, your specialist can give you resources that give more focused medical advice. In addition to doctor’s appointments, there are also support centers for those struggling with celiac disease and maintaining a strict diet in many major cities. To find these, ask your specialist or search the web.
There are still so many people that are misdiagnosed for celiac disease and it is important to get it correct to begin the correct treatment.