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Hello everyone,

I wanted to write to each person and personally Thank them for the support;
however, this is a very supportive group. I received 68 of the most helpful
and supportive letter yesterday and I would like to Thank each and every
one that sent me a letter. I also forgot to sign my name yesterday. My name
is Lucy.

I talked to my physician yesterday and the name of the procedure is a
Sigmoidoscopy. I am not looking forward to it, but I certainly feel better
and more at ease now.

I asked about Coke and Pepsi, because one list says yes and the others say
it is a no-no.  I had several people email me saying that it was listed on
their CSA list as gluten free. Everyone agreed it is not nutritious. I am
addicted to Diet Coke, like an addict is to Heroin. I spoke to my physician
last week about it and he suggested that I find something alternative to
drink. I went cold turkey yesterday. I have not had a soda of any flavor
for 36 hours now. I think I am having withdraws. If you do not hear from me
it is because I am at The Betty Ford Clinic for Coke addiction (ha! ha!) I
actually feel better today. Wish me luck.

I received a very nice letter from a physician who subscribes to the list,
who stated that mummers were sometimes common in pregnant women and people
with anemia. He felt it was nothing serious. Well that is a relief. I have
enough troubles dealing with Celiac Sprue and D.H. Someone wanted to know
how they found out it was a heart mummer? Well when I went to my physician,
I told him I was having a shortness of breath. I told him that I had been
anemic for several years and thought it might be that. (I go to school in
Plano and have to use the stair a great deal, when I reach the top, I have
trouble breathing. I feel as if I have been running) He took several blood
test and listened to my heart for a period of time. He then diagnosed me
with a heart mummer and told me that I could still exercise and use the
stairs just not to overdo it. He also instructed me to get back on iron
tablet and recommended a different brand because, they were making my
stomach upset.

A great number of the support letters asked if I was a diagnosed Celiac and
was I really gluten free?  Yes I am diagnosed with Celiac Sprue and
Dermatitis Herpetiformis. I have been gluten free for two years or so I
thought.  When I am at home I am totally gluten free; however, I travel
alot. When I ingest gluten it is a result from eating out. I thought I was
doing well by eating the grilled chicken salad at McDonalds (yes I inquired
to the ingredients. I was assured it was grilled chicken with only a little
salt and pepper) Well it turns out that it was made with wheat starch in
the processing plant for McDonalds. ( I confirmed this through the Food
Allergy Network) I was also eating some Spanish rice from a local Mexican
restaurant, It also turned out to be made from a mix that contain wheat
flour. ( I had also inquired and was told by the chef that it contain no
flour, etc. My sister knows someone who works there and asked her. Her
friend told her it was a mix and when she read the label. It contained
wheat flour) Well I became very ill and started getting blisters (from
D.H.) I started to bleed (gross I know)  I knew it was gluten and started
taking an antibiotic that my physician subscribed to me. Only this time I
did not stop bleeding.

I went to a specialist who wants to do the Sigmoidoscopy to make sure there
is nothing wrong besides a reaction to gluten.

I am feeling better today. I had become so frustrated at the medical
community last year that I simply quite going to the Dr. and quit taking
iron. ( Stupid I know) I was so mad because every time I went to a new Dr.
they new little about Celiac Sprue or thought I was a lunatic. I was told
by three Dr. last year that if I would give up eating wheat bread all the
time I would not be sick. I decided the other day that I would find a good
physician if I kept looking. I went to the University of Texas South
Western in Dallas. ( I had seen a Dr. threre before who thought I was
faking) I had seen a card for Dr. Bilhartz and it said he specialized in
Celiac Sprue. Well I gave in and called him for a appointment and he was
very nice, and well informed ( except about which foods have gluten or
not). I really like him and I think he will really help me to get well and
stay healthy.

Well I have rambled on long enough. ( I know you fell asleep a long time
ago) but I just wanted  to say Thank You! Thank You! for your support and
encouragement in my time of need. I will let you know how my test goes. I
take it on next week.

Thank you,

Lucy Shriver