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Dear List Members:

I am very worried about my daughter who is 22 years old and graduating from
college. She has been very sick this past summer and nearly collapsed from
this mysterious illness.  Since I am a diagnosed celiac, I thought the best
route was to have her worked up for CD. She has had and still does not have
any GI symptoms; she has had progressively severe fatigue and now lives with
a chronic headache.

She was treated by a GI specialist in this area who specializes in CD; my
daughter's bloodwork was negative for all four celiac panels. We then did a
biopsy which revealed that she had about 5-6 ulcerated places in her stomach
lining (the doctor called these "erosions" and put her on
prescription-strength zantac 3x daily). The biospy report was basically
negative for celiac as I understand it, but "there was one place suggestive
of celiac" and since I have CD the doctor put my daughter on a strict GF
diet. She is also intolerant of dairy and eggs. She has been very faithful to
the diet and monitors everything she eats like a hawk.

Here's the problem: she's getting WORSE. Her energy level continues to drop
and headaches are on the rise. I have taken her to a very good naturopath who
has suggested several supplements, including DGL which makes her sick to take
it. I don't know what to do for her and am getting really scared watching her
helplessly get weaker and weaker. The GI doctor doesn't seem to know what to
make of this.

I am open to any and all suggestions; I am willing to take her to any doctor
or clinic in the country or in Europe etc. She wants to know if there is
anyone treating CD who is actually a celiac themselves? She is angry and
frustrated that she is sentenced to the GF diet and not only does she not
feel better, she feels as if she is "going down the tubes." She has only been
on the GF diet for two months and I"m wondering if this is just not long
enough to see any results; on the other hand I feel like I need to be
assisting her with something before it's too late.

I have an appointment with the GI physician next week to see if there's
anything else to explore or do; I am also considering taking her to my
homeopathic MD, but I know more about celiac than he does.

My daughter has been a healthy and robust person up until this past 6-8
months; she ran 4 miles/daily until recently, rides her bike l0 miles to
school and back etc. But now she is constantly exhausted, and the slightest
stress gives her a headache.
The ulcers are not H.pylori or bacterial; they were cultured at the time of
biopsy.

I am hopeful that someone out there (or many of you) can help me help my
daughter and I thank all of you in advance for you wonderful support and
advice.

Looking forward to hearing from you ..... Leslie (in Atlanta)