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Hi Everyone,

Recently a nursing student posted to the list regarding what information
could we give her on Celiac disease.  I wrote her the following which I
decided I also wanted to post to the list as it was concerning something that
happened recently to a family member who was hospitalized:

I think most Celiacs would just like the medical professionals who work in
hospitals to know what Celiac disease is and to know what diet they can eat.
Recently my husband's aunt had to go to the hospital for chest pains. (She is
a recently diagnosed Celiac and 83 years old).  I didn't know she was there,
because her husband could not find my phone number and did not call me.  If
he would have called me, I would definitely have brought her some food she
could eat.  Anyway, she told the workers in the hospital that she was on a GF
diet and she had Celiac disease.  They had never heard of it so she received
a regular tray for dinner.  It had meat on a wheat bun which she ate because
she was very hungry.  For breakfast she had Rice Krispies which is a little
better (it still has barley malt) and she ate a small bun made of wheat. She
was ashamed to tell me she ate all this forbidden food, but she was very
hungry and this is why she ate it.

Anyway, it is a shame that of all places one must be afraid to be if you have
Celiac disease is a hospital.  I told my husband if I ever go in the
hospital, he must bring me my GF food from home as I certainly could not
trust the hospital food.

I am pleased that you are interested in learning about the condition.
Unfortunately, in the US, many people are not diagnosed when they should be
and go for years living with very bad health.  In addition, they can be very
old (the average age of Celiacs in a local support group is approx 60 years)
and older people are not as assertive in asking for what they need from
medical professionals, nor are they able to do things younger people take for
granted such as ordering gluten free food from a company over the phone with
a charge card.  Many older people do not use charge cards and this is the
easiest way to order GF food.  One company used letters in their 800 no and
my husband's aunt had idea how to dial this no.  I had to do the ordering for
her.

It appears to me that when an older person is diagnosed with Celiac disease,
extra support must be offered them in order for them to be compliant with the
diet. The doctor wrote an order for my husband's aunt to talk to a dietician.
Well, the dietician was at a hospital that was too far for her to drive to
so she could only talk to her on the phone. Also, she did not even attempt
the diet for four months because all she eats for breakfast is toast.  The
gluten free bread that she tried she hated, so she refused to eat it.  The
only thing that was holding her back from the diet was to provide her with a
good bread.  I was able to do this because I bake a very good bread, but I
must help her bake it as she is too frail to do it herself.  I do not mind
doing this, but how many other older Celiacs do not have someone to help
them?  I really believe the lack of proper support prevents many Celiacs from
being successful on the diet.  Perhaps this is also why many doctors are not
happy to find that a patient has this condition, because it would be easier
to prescribe a pill than to put them on a diet that is very hard to follow.

I was pleased that this nursing student was interested in our condition and
hopefully, in the future there will be many others who will be interested and
will know what the gluten free diet is.  It is really insane that the place
we need to fear the most if we have Celiac disease is a hospital.  It is the
utmost in irony.

Barb from NE Ohio