Not so long ago, celiac disease was
considered to be an allergy to gluten, a protein found
in wheat and other grains, that predominantly affected
children.
Now, however, it is known that celiac disease is an
autoimmune disease that affects about 1 percent of
people in the United States, says Dr. Alessio Fasano,
director of the Center for Celiac Research at the
University of Maryland School of Medicine.
What is celiac disease?
Nowadays, celiac disease is
perceived to be an autoimmune disease like diabetes and
multiple sclerosis, not a food allergy to wheat as
thought before.
When people who are genetically skewed toward the
disease eat wheat, they, first of all, have a reaction
[to wheat] in the intestine. The reaction makes the
intestine leakier so that more wheat comes into the
body. Then the immune cells of the intestine will mount
an inflammatory response that ultimately will damage the
liner cells [of the intestine] that are charged with
absorbing nutrition. Ultimately, it can lead to further
damage throughout the body.
Who is susceptible to this disease?
We thought it was extremely rare. Now we know it is the
most frequent human gene disorder.
One out of 133 people in the United States is affected
with celiac disease. Celiac disease occurs in 5
[percent] to 15 percent of the offspring and siblings of
a person with celiac disease. ... It is strongly
suggested that family members be tested, even if they
are asymptomatic.
What causes it?
Like all autoimmune diseases, its recipe is the genes
you are born with. We know some of the genes involved.
And there is a trigger - something in the environment
that is mismanaged by the people who have this disease.
But this means that this is the only autoimmune disease
that we know the trigger for: the protein - gluten -
found in wheat, barley and rye.
What are its symptoms?
When the celiac disease was first described, we were
under the impression that this was a disease affecting
only kids and would only present GI [gastrointestinal]
symptoms - mainly diarrhea, weight loss and stunted
growth.
Over time, we have come to appreciate the complexity of
the clinical symptoms, which can affect any system or
organ of the body.
So not only can it affect people of any age, but it can
include the GI symptoms - vomiting, nausea, irritable
bowel symptoms, constipation instead of diarrhea - and
many others.
How is it diagnosed?
The other strength of the condition [in addition to
knowing what triggers this disease] is that we have a
very, very good screening test. There is a blood test
for specific antibodies unique to celiac disease and if
you test positive for these, you have a 95 percent
chance of having celiac disease.
How is it treated?
Well, the luxury of celiac disease, compared to all
other autoimmune diseases, is that we know the trigger.
Knowing the trigger - gluten - is the cornerstone of how
you treat the disease. We can't remove the genes - we
aren't quite there yet - but we can completely avoid for
life products that contain gluten. Now that is easy to
say but very, very complicated to do.
Once gluten has been removed from the diet, are the
symptoms alleviated?
It depends. In the vast majority of cases, they will
completely go away: Anemia will be resolved and with it,
fatigue, and so on.
But the issue is different if you have had the symptoms
for so long that they cannot be fixed anymore. For
example, if you are diagnosed ... by around age 30, then
osteoporosis can be fixed. But after that, it cannot be
changed. Or if you are diagnosed before puberty, then
you can catch up in your growth, but after that you
really can't do anything.
What do you tell your patients who are diagnosed with
celiac disease?
The vast majority who are diagnosed with this disease
react with anger, dismay and frustration. Especially
teenagers, because if you think [about] what this
implies, you understand their frustration: From this
moment on, you can't eat pasta, pizza, bagels, cookies,
cakes, beer.
It means your lifestyle changes. When you travel,
socialize, go to college, it affects your lifestyle and
will limit it in certain ways.
I tell them, "I do understand your feelings, but let's
say I have the power to trade your celiac disease for
any other autoimmune disease, which you would rather
have? Cancer, diabetes, Crohn's, cystic fibrosis?" They
say, "Well, I will keep the celiac disease."
