Part 29 of our award-winning series “Our Children’s Health”
Amanda Brown, of Plainview, works as a student teacher at an elementary school during the week. She also teaches Zumba, a fitness class that combines exercise with Latin music and dance. Two years ago she was a student at SUNY Oneonta, finishing up her sophomore year. Two years ago, she was told she had stomach cancer.
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When she first went away to college, Brown was diagnosed with mono. Months later, still sick, she went to the hospital. Doctors found a cyst on the outside of her ovary.
“I just never got better,” she says. A year later, she went back to the hospital with horrible stomach pain, and was given a new diagnosis: an intussusception of the bowel. She was kept overnight, given a CAT scan and sent on her way.
A week later she was back in the hospital, again with severe stomach pain. Diagnosis No. 5: There was nothing wrong.
“It was almost like saying to me, ‘You’re making it up, it’s in your head,’ without verbalizing it,” she says.
Her gastroenterologist back at home found a surgeon she could visit in Cooperstown, N.Y., while she finished her semester upstate. It was finals week, so Brown made an appointment and took the 40-minute trip before her exams, looking for an answer.
“He felt my stomach and told me I had cancer,” she says.
Scared and upset, Brown finished up her semester and went home. Her doctor took a blood test, had her swallow a camera pill that would take pictures of her intestines, and took a biopsy on her small intestine.
She didn’t have cancer.
She had celiac disease, a potentially fatal, but treatable, disease that is almost never diagnosed properly, if at all. Even when it is, parents and children struggle to get others—including doctors and school administrators—to take them seriously.
FRIENDLY FIRE
Every aspect of life—from physical well-being to mental health—is susceptible to damage from celiac disease, an intolerance to gluten, the protein found in wheat, barley and rye. Unlike a wheat allergy, which causes a sudden, severe reaction like breathing difficulty, celiac is an autoimmune disease with a slower onset. Simply put, exposing a celiac to even the tiniest bits of gluten, which the body is unable to digest, causes it to turn against itself and attack its internal organs, waging a war on the immune system and destroying the intestinal walls so food and nutrients cannot be absorbed. Over time, celiac can lead to cancer, malnutrition and other disorders. But because many people think of gluten-free as a diet or fad, the fact that the disease is a serious, chronic, lifelong problem, is often overlooked.
An analysis done by the Hartman Group, a consumer marketing company, in 2009 found 93 percent of the people who buy gluten-free products don’t have celiac disease. They were either excessively health conscious or fad dieters in search of the next trend.
“Just because alternative health practitioners, personal trainers and celebrities are jumping on the gluten-free bandwagon, doesn’t mean it is right for everyone,” says dietician Shelley Case, author of Gluten-Free Diet. “Contrary to popular buzz, the GF diet is not a panacea diet.”
Case worries that too many people will look to the diet to solve all of their problems, from learning disabilities to obesity. The gluten-free diet only alleviates symptoms for those with an intolerance. For those without an intolerance, gluten is an important source of protein, iron and calcium. But as going gluten-free gains more attention, especially in Hollywood, the gluten-free lifestyle is often seen as the next low-carb diet.
“There really is nothing that irritates me more than hearing, ‘It’s just a piece of bread’ or ‘I hear you’re on the Atkins’ Diet’—like it’s the same thing,” says Craig Pinto of Jericho, kicker for the New Jersey Revolution arena football team, who was diagnosed with celiac 10 years ago. “Serious things can result from not getting this treated properly or diagnosed early enough, so it’s sad when it gets passed off as a joke when you can’t have a burger with a bun.”
Since celiac, a multi-symptom and multi-system disease, doesn’t always involve a stomachache, produces strikingly different symptoms in different individuals, and often mimics other disorders, it is commonly misdiagnosed. Celiac could manifest as an intestinal infection in one patient, a rash or growth problems in another and neurological problems or even dementia in a third. Recent studies suggest a gluten connection with some cases of autism. Celiac is also more likely to affect those who already have another autoimmune disorder, like type 1 diabetes or rheumatoid arthritis.
Pinto, who played football for Hofstra during college, was diagnosed with celiac in 2001, 10 years after he was diagnosed with Crohn’s disease, another autoimmune disorder.
“I was a pretty rambunctious little kid, but at that point I wasn’t growing,” he says. “I was pale, I was very sick a lot with stomachaches, but I was active so it was just kind of put off as I just had to settle down, eat and relax for a second.”
At 21 years old, he was still up late at night feeling sick after eating pasta or pizza. Since those who have one autoimmune disease are more likely to have others, and Pinto already had Crohn’s, he was tested for celiac. The test came back positive.
BREAKING BREAD
It’s 2:30 p.m. on a Monday, and Randi Albertelli of Old Bethpage is waiting for her two kids to get off the bus. Amanda, 9, was diagnosed with celiac when she was 5 years old. She had leg cramps, headaches and a distended belly. At her yearly checkup, the doctor found she was anemic.
“It was kind of a red flag because she was such a good eater as a child that we kind of questioned it, but we really didn’t pursue it, unfortunately,” says Albertelli.
As time progressed Amanda came down with other symptoms. She was moody and getting stomachaches.
“Luckily enough my pediatrician tested for celiac disease. We had no idea what it was,” she says. Her stomach had been swelling from malnutrition, even though she was eating like a normal kid.
“It was traumatic, it was devastating,” says Albertelli. “There are so many other horrible things in this world, but as a parent all of a sudden to hear that your child can’t eat certain things, it was upsetting. Now I look at pictures and I see it, and I say, ‘How did we not know?’ You get so mad at yourself as a parent, but I didn’t know.”
@ celiacmom So your son had a very positive TTG and Maybe even a positive EMA? As you know an elevated IGG doesn’t give you a diagnosis of celiac disease. And you were diagnosed with a positive small bowel biopsy? And positive blood work too?
And more than likely…you guys are self diagnosed! That’s why you’re so riled up! Complete fakers! All this celiac awareness is bringing all the kooks out of the woodwork! My doctors know what celiac was 22 years ago. They do know what it is. Most people just don’t have it!
Right on Steve!!!!
I am paying no attention to Fancy Nancy anymore think she is a lonely nervous hypochondriac, waste of my time…
I feel great on the diet, and my son also has had drastic improvement. The only time he has a problem is when he gets gluten by accident, but after a day or two he is back to normal.
Robert I will look for your article. If you read my post we had a hard time before my son was diagnosed, we were told I was making up stories. As it turned out he had positive blood work in his records. Since diagnosis he is doing great, growing growing growing, and grades are even better in school, and best of all, no more terrible stomache aches and pain..
HAHAH. and because of that YOU FancyNancy can discount peoples opinions or stories. I love your logic. Because no one else in the world has differing symptoms, or can experience something different then what youve seen. it has can only be what youve experienced, you know all, you ARE Celiac. Thank you for pioneering for everyone else in the world. Give me a break.
It’s plain disrespectful to say you have a disease when you don’t. Real celiacs do suffer. Yes, more doctors need to learn more about celiac and check for it. Thank you Mr. Murphy for sharing Eamon’s story. Last I knew, he was doing great. I’ll look up the story you mentioned.
As far a diabetes..my family is full of it. My mom was the only type 1. she was brittle and only lived 11 years with the disease. She had a ton of celiac symptoms the her drs.called nervous colitis. That’s why I thought I was just nervous.
I’ve been on the gf diet for more years then most of you have ever even heard of celiac disease. I am qualified to make observations about the diet. It’s my life.
FancyNancy, being that you seem to be the end all on what Celiac Disease is, who really has it, and what foods are the good foods for a Celiac patient to eat, please help me out. Ive been struggling for over 10 years trying to maintain health and a healthy diet, I wish you would have enlightened the world with your critical comments and knowledge of everything years ago. This article is a waste, since you said so. Your classification of people as diabetics seems pretty right on as well, i mean since you KNOW what people feel and how to diagnose everyone. Perhaps you should become more educated before slamming anything people try to do thats productive and helpful. Your posts are informative, only in the way that they show people what not to write in public. Unless you want to sound smug-for-no-reason of course.
Check out the Spring addition of Allergic Living Magazine. There is a feature on my son ,Eamon Murphy, who was diagnosed 9 years ago at 4 years old. My wife and older son have it as well. WE NEED TO SPREAD THE WORD ON THIS DISEASE
I hate to burst your bubble, but munchausen syndrome is a very real disorder. In fact now it’s invaded the health support chatboards.
http://en.wikipedia.org/wiki/M%C3%BCnchausen_by_Internet
I was pretty sick when my celiac was found. I was in denial about my symptoms an chalked it up to nerves. I didn’t seek out treatment until I was quite ill. I spent 2 weeks in the hospital receiving Ivs with vitamins, minerals and electrolytes.
For me, it’s is a very embarrasing disease to have. I have a classic case. My mom had type 1 diabetes. She died.
@mike d…. Excuse me? The only thing gluten free that’s worth eating is Tinkyada pasta. Most all of the rice breads are crap! I mostly eat fresh food. Guess what! That’s how everyone should eat. If everyone ate is if they were diabetic…they would feel so much better. I believe the non celiac gluten intolerants are actually diabetic or at least pre diabetic. Most are heavy, have high cholesterol, high blood pressure, aches and pains, mood swings…..all symptoms of diabetes…not celiac!
Fancy Nancy,, That is not a very interesting article its pure rubbish!!! Munchausen syndrome by proxy is nothing but a modern day witch hunt. This can tear apart families forever for no reason. That article was also from 2002, and since “Munchausen” itself has been discredited.
After reading your story you are very lucky you had a quick diagnosis, that is not typical. Obviosly you had been sick for some time since you say your health will never be 100% if you were that sick and that damaged how do explain the dr not diagnosing you earlier?
good article to get the word out.nobody or animal should ever eat this moldy shit its not food
[...] Read more on Long Island Press [...]
http://www.thefreelibrary.com/Celiac+disease+as+a+manifestation+of+Munchausen+by+proxy.(Case+Report)-a0113458084
This is an interessting article about celiac and Munchausen by proxy.
I just wanted to thank you so much for this article. I would love to share my horror story with you. In 2005 I wa diagnosed with celiac disease, in 2006 when a dr could not figure out what was wrong with my child, they blamed me for “making up” his illness and I lost both of my children to cps. It was the worst few years of our life and was later discovered that he had celiac all along, and that the dr was covering up malpractice lawsuit. Long story short 4 years later we are broke after paying 300K in legal expenses because a dr made a mistake. The bright side my son is thriving and doing absolutly amazing living a gluten free life. I fear that there are so so many families that might be torn apart like we were because dr’s just dont seem to understand celiac.
I think it is a trend right now. There are only around 40,000 truly diagnosed celiacs in the USA right now. Most people self diagnose after their tests turn up negative. That many doctors can’t be all that wrong!
My doctor had no trouble diagnosing me at all. I have severe malnutrition and vitamin deficiencies. I had a very positive small bowel biopsy. It took me more than a year to get better. My health will never be 100% because I was so damaged.