Eric R. Olson

VIDEO: A Profile of Celiac Disease

Celiac disease, an allergy to gluten, may be the most underdiagnosed health problem in America today. Health officials estimate more than two million Americans  suffer from it, but only a small fraction of cases are ever diagnosed.

In the spirit of Celiac Disease Awareness Month, Science of the Times brings you the story of Kelly Courson, a 37-year old receptionist who was confronted with a bewildering array of symptoms in her early twenties. After years of misdiagnosis by doctors,  she recognized her illness as Celiac disease and began treating herself.

Now she helps other Celiac sufferers adjust to a gluten-free lifestyle through her website Celiac Chicks.

Correction:

The video refers to celiac disease as an allergy to gluten, which is technically incorrect. A true food “allergy” involves IgE antibodies circulating in the blood stream that trigger an immediate allergic reaction. According to Dr. Peter Green’s book “Celiac Disease: A Hidden Epidemic”, celiac disease is better defined as a “delayed type of immune reaction.”

TRANSCRIPT:

NARRATOR:
Food…it’s one of life’s greatest pleasures. One that we often take for granted.

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But what if the food you loved…was unknowingly making you sick?

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That’s what happened to Kelly Courson, a 37 year-old receptionist who lives in Queens, New York.

KELLY COURSON: The symptoms came on hardcore when I was 21… I just had a lot of gastrointestinal issues, lost weight, the general malaise, the dermatitis herpetiformis, the sores that appear on different regions of people’s bodies. But for some reason they like to come out on my face.

NARRATOR:
Unknown to Kelly she was suffering from Celiac disease, a severe allergy to gluten, which is a molecule found in wheat and other grains.

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According to an estimate from the National Institutes of Health over two million Americans may suffer from Celiac disease. Although, like Kelly, an unknown number live without a doctor’s diagnosis.

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The most common symptoms of Celiac Disease, diarrhea and malnutrition, are caused by damage to the small intestine.

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The small intestine’s role in the body is to break down and absorb nutrients.

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It is lined with a carpet of tiny, finger-like structures called villi that help to maximize its surface area.

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The villi, in turn, are covered by millions of cells called enterocytes.

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These cells absorb nutrients and pass them into the blood stream for use in the body.

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Gluten, like any nutrient, is normally digested and absorbed by the enterocytes.

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But occasionally, undigested gluten sneaks past the enterocytes into the lining of the gut

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In normal people its no problem. But in people with Celiac disease, the immune system perceives a threat and mounts a chemical attack.

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This damages the enterocytes and prevents them from doing their job of absorbing nutrients.

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Outwardly, the damage usually appears as diarrhea, vitamin deficiencies and malnutrition.

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But sometimes Celiac disease displays other symptoms. This makes it difficult for doctors to distinguish from other illnesses.

DR. PETER GREEN:

Celiac disease can really be regarded as a great imitator, because there are many different conditions that have similar manifestations….irritable bowel syndrome…peripheral neuropathy…balance disorders…lupus…chronic fatigue syndrome and all of these may actually be manifestations of Celiac disease.

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Dr. Peter Green is the director of the Celiac Disease Center at Columbia University. He says that only about three percent of Americans with Celiac disease are ever diagnosed.

DR. PETER GREEN: The main hindrance to people getting diagnosed is doctor’s not being aware of the condition, not being aware of how common it is, and how easy it is to actually diagnose.

NARRATOR:
In Kelly’s case, doctors had failed to recognize her symptoms.

KELLY COURSON: I’d go to clinics and ask them to test me for mono or hepatitis and they just wouldn’t ask a lot of questions and run the blood test and be like, “you’re fine.” I don’t know if there is anything worse than to be sick and not know why.

NARRATOR:
It was her mom that finally put the pieces of the puzzle together.

KELLY COURSON:
My mom read a Prevention magazine article about celiac disease and she put together everything–the gastrointestinal symptoms, skin problems and the depression or lack of energy combined and said why don’t you try this diet because it sounds what like you have, it makes sense, it’s everything all together.

NARRATOR:
Kelly tried a gluten free diet. Currently the only treatment for celiac disease. She had to eliminate all wheat and other sources of gluten.

KELLY COURSON:
There’s a huge learning curve, learning what ingredients mean. All these words like, what is maltodextrin and does it have gluten it?

NARRATOR:
She saw immediate results…

KELLY COURSON: It was like a miracle cure. In two weeks my skin was clear and I felt stronger and we were definitely headed in the right direction and I wanted to continue with the diet.

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Twelve years and many gluten free meals later Kelly’s symptoms haven’t returned. She says this is the reason she has never gotten a formal diagnosis from a doctor.

KELLY COURSON: As I mentioned, my mom’s research you could say and then my trial and error with the diet and the results that I saw, that I was self-diagnosed. Now., learning more and more about the disease and the tests that have become available I would have to go through what’s called a gluten challenge and eat gluten for at least a month, if not more, in order to get a biopsy, intestinal biopsy and sacrificing my health to do that,isn’t worth it to me.

NARRATOR:
Dr. Green says this isn’t uncommon…

DR. PETER GREEN:
We often see patients who are already on a gluten free diet, they self-diagnosed it or they went on an weight reduction Atkins diet and they got better, they’re really on a gluten free diet. Now if they’ve been on the diet for six to 12 months, the biopsy would be negative, more than likely and the blood tests would be negative. What we would do then is offer them a gluten challenge. We’d say you should eat bread or pasta or the equivalent for one to three months and then have a biopsy. Some people say “yes I want to do that because the diet’s expensive, its socially inconvenient and I want to make sure I have it.” Other people say “I feel so good, I don’t want to eat that stuff again” and that’s a very reasonable approach, it’s reasonable for them to say they have Celiac disease if that’s better for them to get a gluten free diet under all the other circumstances.

NARRATOR:
In 2002, Kelly decided to turn her illness into something positive. She started a blog with a co-worker who also had Celiac disease. They named it Celiac Chicks. It provides gluten-free recipes, restaurant reviews and links to gluten-free products.

NARRATOR: Although Kelly receives some compensation for her efforts–Google advertising pays for the cost of running the site and she gets to keep free samples of the products she reviews—she says that isn’t her primary motivation from Celiac Chicks.

KELLY COURSON: I like to think that my blog has had a good impact on people and has helped them in some way, as I mentioned the business owners on their end that are trying to help us, that we’ve somehow helped them to survive as a small specialty business and then for the people who this is their new lifestyle change, which is pretty drastic in the beginning, that its helped them to put a positive spin on it and make it more of a fun adventure, than just a drag and feeling like they’re alone and can never enjoy food again. So that’s what I hope that I have done.

CREDITS:

Written, Directed & Edited by Eric R. Olson
Camera by Eric R. Olson & Melissa Schisler
Narrated by Melissa Schisler

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