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Hello all. I was wondering if you'd care to share your thoughts with me on
my present situation.
I was diagnosed with CD in December/January via blood test and upper
endoscopy (including biopsy). My GI says I am a textbook case. My Tissue
Transglutinase level (pre-GF) was 207. He retook it in early March and it
was 116; improvement, but not there yet!
I was previously diagnosed with IBS in 1997 after bouts of alternating
constipation and diarrhea (the latter being the more troublesome). Some
bloating & gas as well. My symptoms were worse over the summer of 2001, so
I went to the GI, he did some blood work, noted the high TTG level and
scheduled a biopsy. Late last year I did not have symptoms every day but
often enough to bother me.
Went GF 1st week of January 2002, but couldn't get in to see the
nutritionist until 3 weeks later. Although nice, she didn't tell me much I
hadn't already learned. I have heard this is not uncommon! I joined the
local support group in February and got a lot of good info from the
President. Much more online from folks like you who live with this illness.
I feel that I have, by now, gotten rid of all (or virtually all of) the
hidden gluten. My symptoms improved greatly over January through mid-
February. Then the big "D" started up again, more on than off, and mostly
confined to the mornings. After looking for hidden glutens, I realized I
may be, at least temporarily, lactose intolerant. So I eliminated that.
Some improvement, but I am still having symptoms, 3&1/2 months later. I
have just recently eliminated guar gum but that doesn't seem to have made a
big difference. I take somet
hing for the D if really bad, but otherwise
try to eat right, take a mulitvitamin (I JUST found out my Centrum has
lactose, so that is going out!) and calcium (Citracal).
It frustrates me (esp. my logical side) that I could feel worse than when I
first started.
What do you think about this? I'd love to hear your thoughts/experiences.
My doc at first said the usual, "stick to the GF diet". I mentioned to him
that perhaps I have some food intolerances and may benefit from seeing a
dietician knowledgable in CD. I am going to get the number of one from the
local group; my doc didn't have a contact (a fact that bugs me).
I wonder if my tissues are starting to heal finally (after who knows how
many years of active CD; I have been anemic for several years) and perhaps
my system is really sensitive for now. Could that be? My GI is not
worried about some other illness and h
as not suggested further testing yet,
probably since the diagnosis is relatively new. He wants me to keep
working on my diet to ensure it's GF. I think a dietician might be able to
help me identify if I am having other food intolerances; I feel that I can
identify GF foods well at this point. I have not knowingly cheated and
eaten foods with gluten and have a supportive spouse who carefully keeps
his nonGF foods separate. Also bought some new pans to ensure I am not
cooking on contaminated surfaces.
I'll gladly summarize any/all responses. I suppose peace of mind that I am
doing the most I can for myself is what I am looking for. Knowing that the
symptoms will improve (or at least feeling so) would help a lot.
Many thanks to all - be well!
Pat
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