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Hi all,

I  want to chime in here as I've just had a similar experience to Sheila's
and I'd love to hear your thoughts. First, a little background: About a
year and a half ago, a friend persuaded me to go on the Carbohydrate
Addict's diet with her. Starchy carbs only once a day, lots of fruit and
veg. It worked wonderfully well and we both lost weight. I went around
telling everyone how fantastic I felt. But it's a hard diet to follow and
eventually I fell off the wagon. I started eating the way I had done and
realized within a couple of days why I'd felt so great. The stomach
troubles and digestive disorders that had always plagued me had been
drastically reduced. I figured, "Hey, it's the grains!" and promptly cut
them all out of my diet. My health improved, but the symptoms weren't
completely gone. (I didn't know much about gluten so I was still consuming
additives.) Eventually, I told this story to my doctor, who'd been stymied
for a long time, and she said, "Sounds like Celiac disease." I said, "My
cousin has celiac disease." She asked me if I could eat rice and corn, I
said I don't know, I hadn't been. So she set up an appointment with a
specialist and I did what I do best ;-) Researched the topic. I learned
about gluten and I learned about symptoms. I cut all gluten, including
additives, out of my diet and soon began to feel much, much better. I
gingerly introduced rice and corn into my diet and felt no ill-effects
whatsoever. I also identified every single one of my symptoms as being
potentially CD-related. There were lots, too. I'm not talking about one or
two problems.

Cut to last Wednesday: I saw the specialist. I'm no shrinking violet but I
was completely bullied by this man. He interrupted me so frequently I
wanted to smack him one. His opinion seemed to be that wheat is hard for
everyone to digest, so what? He scoffed when I said rice and corn presented
no trouble. "Everyone can eat rice and corn." He interrupted me when I told
him that barley and rye also caused me a lot of grief and discounted it
completely; said that having a cousin with CD meant very little
statistically; discounted the fact that our grandmother (mine and my
cousin's) died of bowel cancer and had very early-onset osteoporosis; and
kept asking questions about how extreme my symptoms were. End result? Not
extreme enough for him to consider CD as a possibility. Everyone has
trouble with wheat...

He wants to do a biopsy though. He has a cancellation on Tuesday that he
needs to fill and he "might as well." My cynical hubby says he just wants
the money for the procedure (I'm in Canada and the govt. pays). I don't
want to let him. I've had a gastroscopy before (for a duodenitis) and it
was no fun at all. I'm apparently not a very cooperative patient ;-)
Anyway, I don't see the point. I've been gluten-free for four months, (I've
learned that I shouldn't before being tested, but I just could not live
with the pain and all the other troubles, including depression which has
just *gone*); and grain-free for a year and half prior to that. If he finds
CD, the cure is to go gluten-free, which I already am. And if he doesn't,
I'm not about to reintroduce gluten into my diet, because I already know it
hurts. (I did an experimental gluten-challenge before Christmas, and yep -
trouble and lots of it. This was on the advice of a dermatologist
-different problem, not suspected DH - who listened to my story and wanted
to do the blood test. But I only ate gluten-containing food for two days
prior to the test and had been g-f for three months by then. I haven't
heard the results yet.)

Sorry this is so long, but I've been on this list several weeks now and I
value your advice.

Regards,
Karen


Sheila Darbyshire wrote:

> After months on a waiting list, I finally got to see the dermatologist
> today.  He said DH was a very rare disorder and he doubted if I had it.  I
> described what I thought was classic DH but a very mild case and he said
> that DH always covers the body in enormous blisters and causes extreme
> illness.  I have had blisters but at the moment only have itchy spots that
> feel and look like miniature cold sores.  He also says that you can have DH
> without having celiac disease, which I thought was untrue (?).  He tells me
> that DH does not ever cause mild skin conditions with terrible itching like
> mine,  and that I must have another less severe form of skin problem.  So
> why does it  always worsen if I consume gluten or if I eat shellfish?  He
> has put me on a waiting list again for skin biopsy at my request, but it
> will take about 7 - 9 months on the British National Health Service.  I have
> another 5 months to wait for endoscopy and colonoscopy for the gastric
> symptoms.  It takes forever in this country. I am supposed to stay on gluten
> while I wait.  Does anyone have any comments on what he said?  What are the
> other list members opinions on so-called 'mild DH' - does it exist, and are
> the biopsy results always reliable?