<<Disclaimer: Verify this information before applying it to your situation.>>
Two in the Family! by Carmen Coluccio of Hicksville, NY
------------------
My story goes back about five years when I started noticing that my
husband of 29 years seemed to be putting on weight around his middle.
Not being a drinker or big eater, yet going into pant size after pant
size, I thought this was strange. However, he said he felt fine and
was probably not getting enough exercise because of his arthritis, and
that was good enough for me. Just as a precaution, however, he did go
to his local general practitioner who gave him a "thorough" check-up
and said everything was fine. He was given an over-the-counter
antacid for his chronic bad breath and told to go home and enjoy life.
Then came that horrible day when Frank told me he was having chest
pains and trouble breathing. My first thought was his heart, and I
immediately called for an ambulance to the much heralded heart
hospital not far from our home. After a cursory exam by the emergency
room specialist, we were directed to a curtained stall where we
remained for a day. Doctor after doctor checked Frank but no one
seemed to think it was serious, and he was admitted for further
testing. To make a long story short, after ten days of every
cardiology exam imaginable, the doctors remained mystified. His heart
was functioning properly, they saw no damage, and all tests came back
negative. In the interim, however, the bland hospital diet was
causing his distended stomach to disappear.
Finally, out of frustration, a group of gastroenterologists and
internists were called in. Unfortunately they were just as perplexed.
(We have definitely found out that not all gastroenterologists are
equal.) After more days in the hospital, more tests, more unanswered
blood work-ups, the frustrated doctors determined it "might be
allergy-related". It was then that one of the tests determined a
gluten intolerance [another name for celiac disease-ed.]. My God,
what was that? We panicked! What was this rare disease? Was it
fatal? Was it treatable? Help!
The internists at the hospital definitely determined it was not a
heart-related problem, recommended we go to doctors familiar with
this disease, and dismissed us. After much research we found the
right doctor and Frank was on his way.
Two years later I fell in a Nor'eastern ice storm and broke my hip and
shoulder. After much time, money, and therapy, my orthopedic surgeon
was puzzled as to why I was not healing faster. He recommended that I
go to an endocrinologist. It was during the bone scan the technician
saw "lace-work" that should have been solid bone. The endocrinologist
then sent me to a gastroenterologist because he felt I was not
absorbing calcium, magnesium, etc. Thank goodness this
gastroenterologist was familiar with celiac disease (CD). After
administering a battery of tests, the gastroenterologist determined
that I was also suffering from CD. I was also sent to a gynecologist,
who immediately put me on the estrogen patch, which allows estrogen to
be slowly absorbed through the skin (thus avoiding my gastrointestinal
absorption problems).
When my doctor started to explain about gluten intolerance, I told him
I knew all about it. This surprised him, but what surprised him even
more was learning that Frank suffered from the same disease. Two
people, from totally different backgrounds, with different eating
habits, with parents from different areas of the world, have the same
disease! How rare! But it is a fact. We do have the same malady.
In fact, now when I think back, I believe my mother was an undiagnosed
victim of this disease. In Frank's family, he thinks his father was
an undiagnosed victim.
Our story has a happy ending. Both Frank and I belong to CSA and a
local chapter. We receive a world of good information from others who
share our problem. Beyond CSA, we have just purchased a computer and
find there is even more information than we dreamed on the Web. And
so, after five years of a gluten-free diet, I can speak for both of us
when I say we're okay.
Now my adult daughter in Houston, who has always had eating problems,
admits that she doesn't feel well after eating anything like pasta,
cake, and the like. She suffers from chronic constipation and feels
that her stomach is always bloated. It is only through what I've
learned that I immediately suggested that she be tested. And now I
kick myself for not seeing her problems sooner--she would not have had
to suffer all this time. I am fearful of the future when she and her
husband try to start a family, in terms of fertility problems
connected with malabsorption. I got in touch with the Houston chapter
to find a doctor for my daughter. I am very hopeful we can find the
correct answer to my daughter's problems. I am very grateful to the
celiac organization for their continued assistance.
[Editor's note: two things strike me about this story. First, notice
the very different symptoms of husband and wife. He had the stomach
bloating common with CD, and eventually suffered from GI distress
which led him to the emergency room. She had no apparent symptoms,
other than broken bones that weren't healing properly. And their
daughter, if a celiac, suffered from constipation and a more immediate
reaction to consuming wheat products. Three sets of symptoms, yet all
are (probably) due to the same disease. No wonder doctors have
trouble recognizing CD!
Second, is it really so rare for a husband and wife to both have CD?
If we look at the diagnosed incidence of CD in this country, about
1:3000, then the odds of this happening are 1 in nine MILLION; in
other words, you'd only expect to find about 30 such couples in the
entire USA. But if recent research is correct, and the incidence of
CD is more like 1:300, then the odds of this happening are 1 in
90,000. That is still pretty rare, but it would mean there should be
3,000 such couples in the USA. (Of course, many of these couples
would be undiagnosed.) I think that second number seems more likely,
adding support to theory that CD is a badly-underdiagnosed disease in
this country.]
|
