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Dear List Members

Many thanks to those of you who replied to my recent posting requesting
information about my confusing symptoms.  My original question was as
follows:-

"I have been unable to eat wheat for many years as it gives me abdominal
pain, heavy fatigue, weight loss and depression.  Recently I started to
wonder if I may be a celiac, since I still eat rye, barley and oats and am
never truly well.  I have experimented twice with a gluten free diet, each
time for only four weeks.  Both times I was on the GF diet I felt a bit
better initially (better energy and less headaches), but after two weeks or
so I began to get abdominal pain, bloating and nausea apparently after
eating any type of grain.  The worst time was when I ate several rice cakes
(8 to be precise).  Within an hour I had pain around the navel, followed by
several days of pain all over the abdomen, chilliness and fatigue.  Millet
and corn had similar, though less severe effects.  I also began to have my
doubts about other foods such as eggs and milk, which seemed to cause
indigestion.

This is very strange as it only happens when I am on a GF diet!  Could it
be that eating a bit of gluten in the barley, rye and oats somehow
'desensitises' my system, so that when I am completely gluten-free a whole
load of other allergies manifest themselves?  The symptoms stopped when I
stopped the GF diet, although I still can not eat wheat.

Another thing that occurs after a week or so on the GF diet is tender
muscle pain in the legs and also some pain in the back and arm muscles.
The first time I tried the GF diet this was quite severe, the second time
less so.

Has anyone ever come across anything like this before?  As I live in the UK
and am under the NHS, it will take a while to get an appointment with a
specialist and my general doctor is unable to help me.  Any comments would
be greatly appreciated."

Here is a summary of the many replies I received:-

(1)  As far as the rice cakes are concerned, some suggested that they may
be contaminated with wheat or have other ingredients in them.  I checked
the packet and it contained nothing but rice and they claimed to be 'gluten
free by nature'.  They may have had cross contamination.  A few people said
that eating eight was taking in too much fibre which could be true,
(although they were not very big rice cakes and I was feeling very hungry
at the time!).  A couple of others suggested I may be allergic to rice -
something I will look further into.

(2)  Someone said that simply making changes to my diet could be enough to
throw my system out for a while.

(3)  Replies came from people who were intolerant to starch in general,
some from people who could eat no grains and one from someone who said that
it is the prolamines which are the tricky bits in all grains and that I
should cut them all out.  Another person said that they had started off
quite well on the GF diet but had then gone on to develop allergies to
corn, rice and canola oil later.

(4)  Several people suggested I could be lactose intolerant. However, I was
eating eggs and milk only at the beginning of the GF diet and after two
weeks cut them out entirely as they seemed to aggravate me.  This did not
get rid of the problem though.

(5)  There was some agreement that desensitisation occurs while still
eating gluten.  People reported other food intolerances beginning and
existing ones worsening while on a GF diet.  Also, it appears that
sensitivity to gluten can increase over time.  A couple of people suggested
elimination diets and allergy testing.

(6)  Someone suggested that perhaps my body was detoxifying itself.  I
would like to know more about this.  Doesn't a detoxification reaction only
last a few days?  The reaction I had lasted at least four weeks both times.

(7)  Someone queried how I could eat rye on its own.  Well, where I live,
our nearby supermarket (Waitrose - a national chain) has at least four
different types of rye bread which definitely do not contain wheat.  They
are all delicious and yeast free and two of them are organic.  In my local
health food store, there are three more different types of organic rye
bread, none of which contain wheat or yeast and they are delicious too!  I
guess I'm pretty lucky to have all that lovely bread around!

(8)  One person said that pain around the navel was one symptom of Crohn's
disease.  I looked up the other symptoms and it appeared that diarrhoea was
the main symptom and I do not have that, so hopefully that means I don't
have Crohn's.

(9)  Someone suggested fibromyalgia may be what is causing my muscle pain=2E
I cannot seem to find out much about what that is exactly.  Others said
they had similar pains connected to their intolerances or gluten.  I am
still mystified about it.

(10)  Lastly, many people suggested having the blood test and biopsy.   I
decided that I will definitely go ahead and do that.  Unfortunately, I will
have to eat wheat as well as other gluten, but I guess I should go ahead
and know for certain.  I have to wait six months for that test.

I have only recently joined this list and find it very interesting.  I was
delighted with the replies to my posting - thank you everyone!

Sarah Marks, UK,     [log in to unmask]