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One year ago this month I went gluten free after receiving a diagnosis of
Celiac.  This week I had the Celiac genetic test done at Kimball Genetics to
determine any future children's' risk of having Celiac.  I received my
results last night and they were negative.  Today the feelings of confusion
and frustration that I felt prior to diagnosis are back.  I am seeking any
insight into how to explain the physiological symptoms I have in response to
gluten.  If anyone with a similar presentation has anything to suggest I
would be grateful.
1) My symptoms began with frequent falls and dropping things for ~ 6 months
(MS in my family - had an MRI and EEG - both negative).
2) Then began having frequent anaphylaxis -- we were never able to determine
the trigger (even with skin and RAST testing) so I received a diagnosis of
"idiopathic anaphylaxis".
3) With each episode of anaphylaxis I had worsening daily GI symptoms.  I
was put on daily antihistamines and sent to NIH to be tested for
Mastocytosis -- again negative.
4) Anaphylaxis was controlled on the medications -- which I continue to take
(but I haven't had a anaphylactic reaction since I've been gluten free.
5) GI symptoms continued to worsen so much that I lost 45 pounds in 5
months.  Many tests including intestinal biopsies were negative -- however
the biopsies were taken only 6 weeks after my symptoms began.
6) After trying every elimination diet I could think of -- my Mom convinced
me to try removing wheat.  I did and within 48 hours I was a new person.  I
still had minor daily GI symptoms, but my weight loss slowed considerably
and I could return to working everyday and life was good again.
7) 8 weeks later I was tested for IgA and IgG anti-gliadin antibodies
(unfortunately I was 8 weeks wheat free at this point).  IgA was normal and
IgG was elevated -- seemed appropriate since it takes longer for IgG to
disappear after going gluten free.
8) My allergist sent me to an Anaphylaxis specialist who didn't have any
additional insight into my anaphylaxis, but was convinced that I had Celiac.
  That was last August and that day I also removed rye and barley from my
diet -- which nearly eliminated all my GI symptoms.
9) So now I am one year gluten free and anaphylaxis free, but back at square
one with understanding why.

I know I could just call this thing an intolerance, but with the risk for
further anaphylaxis I am not comfortable leaving it at that.  I have
immediate and long lasting reactions to gluten, a severe delayed reaction to
annatto and because of the anaphylaxis I have removed nuts, shellfish and
tomatoes from my diet.  It is hard living with this many restrictions
without knowing why.  And there is always the fear of another anaphylactic
reaction.

My only other "lead" is that right before all this began I had a pityriasis
rosea rash - which is caused by a virus and I wonder if that didn't damage
my immune system and lead to this strange confluence of symptoms.

Whatever information I may or may not receive regarding my diagnosis please
know that I will continue to be an ardent supporter of Celiac awareness.  I
will continue living the gluten free life and continue my membership with
the organizations that help us all do so.

Many thanks and Best wishes,
Sara

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