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Paul Sinclair
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Richmond, Virginia
Dear Paul,
I am sharing these thoughts with the list, because I bring up a few
of my own concerns that may lead to some of our enjoyable philosophical
discussions on health management and coping, as well as celiac disease (CD)
in general.
Comparing Symptoms Is OK
I assume you received a diagnosis from a dermatologist.
Unfortunately, as specialists who can identify DH (but tend to send you on
your way), they are not the best to educate you on your gut and how it may
be causing problems throughout your body. Any other ailments you may
experience are probably not too bizarre to be attributed to your body's
auto-immune response to gliadin (the protein in gluten grains). It is common
enough on this list to compare symptoms as earthy as diarrhea and
constipation, as seemingly unrelated as bronchitis, and as minuscule as dry
skin.
Find Some Gut Resource Persons
In my layperson's opinion, you should contact a local celiac support
group and ask for names of gastroenterologists who know CD and will sit down
and take a health history. You might also call the GI Department in
Charlottesville (is that UVA?). The last resort for an adult is to quiz
pediatric gastroenterologists for names of collegues who work with adult
celiacs. (I have heard it said that if a doctor tells you that DH isn't
celiac disease, find someone else.) It may be a great relief to you to find
out that this, that and the other health problem may improve with your new
diet. Also, it is good to get the gluten antibody tests done before you are
off gluten for very long. (They are also useful later for comparison.) Then,
you and the doctor may decide that, in order to better adhere to the diet,
you need a biopsy to show both of you how your upper bowel is responding to
gluten. Again, the <before picture> becomes useful in later years.
My Two Cents On The Biopsy Procedure
(Just to add to the biopsy discussion: I asked for no general
anesthesia, but used <abdominal> breathing to relax. The doctor noticed that
it was a quicker and easier procedure since I was alert and could help out.)
If More Doctors Only Knew . . .
Morbid as it seems, it is reassuring to find out that someone else
on the list or in your local support group gets a cracked lip or a sinus
infection (or whatever) when they ingest gluten. Most of the people in
support groups get GI symptoms because that is how celiac disease is
described in the Physician's Desk Reference. (In my daydreams there are
referrals from dentists!) If you don't have GI symptoms, count yourself
lucky that your skin set off the alarm. For me, my hereditary threat of
developing cancer feels smaller because I have information that my deceased
aunt, uncle and grandparents did not have. And that gives me at least a hand
hold on my future health.
Waxing Theoretical
It almost seems like the later in life we are diagnosed, the more
health concerns we have picked up. It seems that had all of us been
diagnosed soon after birth through a screening process, and put on a
gluten-free diet right away, many of our past and current health concerns
(bone, tooth and gum health, mood swings, blood sugar problems, lactose
intolerance, diabetes, rheumatoid arthritis, etc.) mightn't have popped up.
Water under the bridge, I know, but the threat of further health problems is
a good motivator for me to be strict with myself and to educate others,
especially members of my large and illness-plagued family.
The Big Who Am I?
On a personal note, it has been an ongoing process to separate my
concept of who I am with how my body is misbehaving. I wasted away for a few
years, so it was too easy to start thinking of myself as a sick person.
Especially since the mirror and people around me reinforced the idea. For
therapeutic reasons, I practice talking about parts of my body as if they
were separate from me, just to create a boundary when symptoms get between
me and what I want to be. (energetic, cheerful, able to leap small
buildings--Oops, I slipped a <what I want to do> in there, those are different)
I Eat, Therefore I Am . . .
Speaking of verbs, a wise person once warned me to be careful with
using forms of the verb <to be>. He said for me to say < I feel sick >
rather than < I'm sick >. As a result, I prefer to tell strangers I've
inherited a GI disease, rather than <I am a celiac>.
Happy Trails
So Paul, it sounds like you've inherited a GI disease that shows up
dramatically on your skin. Please take care that it doesn't show up
elsewhere in years to come. To you and all the new participants: Welcome to
the list, be sure to learn how to access/receive the archives, and happy
searching!
Wishing you many healthy and happy days ahead,
Mary C. (not a dispenser of medical advice, no experience with DH symptoms)
Mary Courtney
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Los Angeles, California
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