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It Wasn't just stomach pain, but a disease
After years of suffering and misdiagnosis a woman discovers her
diet to blame.
By Martin Miller Times Staff Writer
Published in the Health Section-Los Angeles Times Sept. 1, 2003
Jackie Rosenblum always had stomach problems. On the worst
days, a rumbling, burning, stabbing sensation in her abdomen
could fold her over in pain.
For years, the Bell Canyon resident had written it off as simply
nerves or cramps. But during her second pregnancy a little more
than seven years ago, the now 36-year-old developed another symptom,
a scorching rash over much of her body, including her eyelids.
"I had one dermatologist tell me I was allergic to being
pregnant," said Rosenblum, who delivered a healthy baby
in spite of her complications.
After a host of incorrect diagnoses, Rosenblum finally found
out what was behind her troubles-celiac disease, a condition
that is estimated to afflict 1.5 million people nationwide. Also
know as celiac sprue or gluten sensitivity enteropathy, celiac
disease is a lifelong digestive disorder
caused by the body's reaction to gluten, a substance found
primarily in wheat products. (see
bottom of page for additional notes).
The symptoms of the auto immune disease can vary greatly; they
may include severe diarrhea, weight loss, abdominal pain, gas
and bloating. But whether the symptoms are mild or intense, bodily
damage is being done, according to the Celiac Disease Foundation,
a nonprofit group based in Studio City. The disease can harm
tooth enamel, bones and joints and cause fatigue, infertility
and depression. It also increases the risk of anemia, intestinal
lymphomas and other auto immune diseases such as Type1 diabetes
and rheumatoid arthritis.
"Some can eat gluten and not have symptoms. Others eat it
and within hours they are vomiting," said Michelle Pietzak,
the director of the Center for Celiac Research-West at Childrens
Hospital Los Angeles. "For some patients, it can be similar
to having an infection with cholera."
The disease's destructiveness is made worse because it frequently
goes undiagnosed. Medical schools usually dismiss the disease
as either a passing condition of childhood or a rarity among
adults. Further, its symptoms are similar to those of more common
disorders such as irritable bowel syndrome, making diagnosis
difficult. The average diagnosis time is 12 years, according
to the foundation.
"It's one of the most under-diagnosed
diseases there is," said Elaine Monarch, executive
director of the Celiac Disease Foundation, who estimates that
more than 22,000 people in the Los Angeles have the condition
but are unaware of it. "Doctors just aren't looking for
it."
Half a dozen of Rosenblum's physicians missed the disease. After
CT scans, MRIs and other examinations and tests, she was told
she had everything from a vitamin K deficiency to Epstein-Barr
syndrome. Finally, after she developed migraine headaches, a
physician said he thought she might have celiac disease.
"I said, "What's that?'" remebered Rosenblum.
"I didn't know what it was and unless someone sits you down
and really explains it to you and what you need to do, it's confusing."
Rosenblum remembered the physician, a migraine specialist, directing
her simply to "not to eat bread," but she didn't receive
more information about the disease. For
three more years, she didn't follow a gluten-free diet and her
symptoms got worse.
"If I went out for Chinese food, I'd eat fried rice anyway,"
said Rosenblum, who didn't know that soy sauce could be a problem.
"I just thought what ever harmful stuff was in there would
be cooked out.
Her migraine headaches continued and when they struck, she
couldn't be in a room with lights, and, at times, couldn't even
finish a sentence. Then one day she was driving with a migraine
and made a left turn into oncoming traffic. "I'm lucky to
be alive," said Rosenblum (no one was injured in the incident).
The episode, however, prompted a visit to a neurologist, who
made the correct diagnosis and stressed the necessity of avoiding
gluten. The protein somehow triggers a reaction that causes the
immune system to attack the small intestine. The result is inflammation
and progressive loss of the tiny brush like folds that allow
food to be efficiently digested.
"If you have to choose an auto immune disease, this is a
nice one," said Pietzak, an assistant professor of pediatrics
at USC Keck School of Medicine and a pediatric gastroenterologist
at Childrens Hospital Los Angeles. "This is the only one
with a cure."
The remedy is simple-Don't eat gluten-but
it requires major culinary changes and due diligence, said Rosenblum.
Celiac patients are instructed to read food labels to make sure
there is no gluten-an ingredient found in wheat, rye and barley
products. Patients typically must purchase food from special
markets and bakeries. "When you first hear the news, you
feel like you're suffering a loss," said Rosenblum. "But
it certainly could be a heck of a lot worse. All
I have to do is change my diet."
Dietary changes can eliminate symptoms in a few months or take
as long as a few years. Rosenblum, a vegetarian since 13, was
only three months into her gluten-free diet when she learned
that her daughter, Ashley, who had been diagnosed with irritable
bowel syndrome, in fact had celiac disease. The disease often
runs in families.
"As a parent, it was difficult coming to terms with giving
your child a disease," said Rosenblum, who needed 18 months
of a gluten-free diet to feel completely back to normal. "For
me, it was worse than having the disease."
If she or her daughter strays from the diet or if some of her
food is contaminated with gluten, she knows within a few hours.
"It's terrible side pain,"said Rosenblum, now a volunteer
for the Celiac Disease Foundation. Thus, she and her daughter
stick to a rigorously gluten-free diet, while her husband and
son still eat foods with gluten. Today, Rosenblum said, everyone
is healthy and happy.
"We're pretty much symptom-free," she said. "We'll
have friends and family over, and everyone will eat gluten-free
bagels, breads and doughnuts, and nobody will know it."
END
HolisticWebDirectory.com-Read the Label
Here is a short list of wheat products: Bread, rye bread,
cornbread, cereals, crackers, soy sauce, pizza dough, pasta,
onion rings-anything fried in batter has flour, fried chicken,
cakes, cookies, ice cream (such as cookie dough or brownie chunks),
meatloaf (many people use crackers), meatballs (usually with
wheat), and the list goes on. Read the label, about 90% of food
has wheat or flour added to it.
How do you know if you have
a wheat allergy?
It is simple. Go on a cleansing diet. For ten days eat only meat and green leafy vegetables.
No dairy-No cereals-No eggs-No corn-No beans-No wheat-No rice-No
potatoes. During the ten days see how you feel. Has any symptoms
gone away? Such as, bloating, headaches, lack of energy, achy
body, joint pain, etc. Next, on the eleventh day try adding one
item. Try a couple slices of toast how do you feel. Continue
this for a couple of days. Then add another item. If you notice
any symptoms coming back than you have a wheat ,or food allergy
depending on what the food item was when the symptoms returned.
At this time you can adjust your diet or better yet, schedule
an appointment with a nutritionist.
*HolisticWebDirectory.com
does not provide medical advice. Our goal is to educate
and to expand our visitors knowledge about Holistic Health Care.
It is important for you to read our disclaimer
and to know how to use the information provided by our health
professionals and practitioners listed online.
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