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Hi there

Thank you to everyone who filled in my questionnaire about allergies with
celiac disease.  I had 80 responses, hence the delay in reporting!

To recap, I am doing an MSc on the presence of IgE to gluten and wheat in
patients with celiac disease.  IgE is an antibody that is involved in
immediate hypersensitive allergies, such as hay fever due to pollen, peanut
allergy, cat allergy etc.   People with these type of allergies produce a
lot of IgE to seemingly harmless substances. The immune system  builds up a
memory of the substance and next time they come into contact with the
substance, IgE starts off a chain of events.  This causes chemicals to be
released (histamine etc.), causing  symptoms of allergy, such as itchy
eyes, sneezing, swelling, breathlessness etc.  The significant
characteristic being that the response is usually immediate or within
minutes, rather than hours.  The tendency to react like this usually runs
in families and the family, is termed atopic.

The other antibodies that the body produces for defence are:
IgA - Present in tears, saliva and digestive system
IgM - A temporary antibody formed for a new invader
IgG - A longer lasting antibody that takes over from IgM to produce a
memory of the enemy.
IgD - Function not really known

Celiac Disease is an autoimmune disease involving the IgA and IgG
antibodies against gliadin.  The response to these antibodies is usually a
delayed response.  Some celiacs seem to be not responding to a gluten free
diet as well as others and are having immediate reactions to gluten-free
food.  My theory is that some  have an IgE reaction to gluten or wheat as
well as the celiac disease and that this is more prevalent in celiacs than
the medical profession would like to believe.  At the moment, celiacs that
have this type of response are usually termed "super sensitive" and are
just told to be more careful.  This is not really fair, considering that
gluten free food does not have to be 100%  gluten-free.  There is a
residual amount of gluten allowed in gluten - free food.  This is
especially true here in the UK.  I want to see if there are a significant
number of celiacs with this problem to  justify  a change in the gluten
allowed in gluten-free food.   Another implication of this study would be
the clear labelling of 100% of the ingredients in gluten free products.   I
would also like to test for reactions to wheat, which could implicate wheat
starch in causing  some problems that celiacs are still having on a gluten
free diet.

The results of my questionnaire are as follows:

Total  responses:                                  80
Immediate symptoms:                                35
Immediate symptoms with other allergies:           30 out of 35
Immediate symptoms with other allergies
and atopic family:                                 24 out of 35

In summary, over 44% have immediate  reactions to gluten.
86% of these have other allergies.
69% are atopic (allergies in family)

This shows that immediate reactions to gluten are not as rare as we have
been made to believe.  It also shows that it could be related to IgE
because over 86% have other allergies, which would involve IgE.  To show
that these are possibly true allergies, over 69% come from atopic families.

I will be including the details of this little pilot study in my proposal,
to show that this is a valid area to study.  I will be handing in my
proposal in the next 10 days.  My plan is to test a group of celiacs, here
in the UK for the presence of IgE to gluten and wheat. The size of the
study will depend on whether or not I can get funding.  Hopefully this will
be a productive study, which will lead to stricter restrictions on the
amount of gluten allowed in gluten free food. I am also hoping that it will
benefit doctors and celiacs to understand and manage the untypical
reactions to gluten and wheat products.  I am also hoping it will be of
benefit to the future of the management and understanding  of patients with
celiac disease with untypical reactions  by medical professionals.

Thank you for your support and the many letters that I have received
encouraging me in this study.  I will try to personally answer many of you
who have taken the time to add in extra information.

On a personal note, I know what it is like to react immediately to gluten.
I react so fast that I have become breathless on opening  and eating a jar
of cooking sauce containing gluten.  I seem to react more when it is moist.
My mouth goes numb, I get breathless, my blood pressure drops,my heart rate
increases, I get disorientated and if gluten  touches my mouth, my lip also
swells and  I   get a blister.  I take antihistamines to counteract bad
reactions and ventolin if the breathlessness is bad.  I never eat out and I
make all my own food.  I have 7 children, 3 are celiac, one suspected and
the other three and my husband have allergies.  So, I really DO understand
and I am VERY motivated to get more understanding in the medical community.
One gastroenterologist wanted me to go on a gluten challenge and when I
explained my bad reactions, he just shrugged his shoulders and said, "how
bad is bad?" Another doctor shrugged her shoulders and said she had never
heard of a reaction like mine.  I have also  been blood tested since and I
AM  allergic to wheat and milk.

If anyone else would like to still fill in the questionnaire, I can still
use the information for my MSc.  Please e mail me for it or it should be in
the archives.


Kind regards
Sarah Bauermeister



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