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From:
Emma Mumford <[log in to unmask]>
Date:
Tue, 21 May 1996 11:30:15 GMT
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<<Disclaimer: Verify this information before applying it to your situation.>>
 
       I am a 21 year old student living in England. (By the way, is
anyone else out there living in the UK?). I have not been diagnosed as
having CD but I am living GF because it has improved my quality of
life so much. The main reason that I have not got a medical diagnosis
is that I stopped eating wheat completely (in as much as that is
possible) in July last year (and rye and oats etc in November) without
any medical support and by the time I saw a consultant ("specialist")
in February he said that I would have to go back on wheat for 2-3
MONTHS before having a biopsy. Like Judith Potts, I feel so much
better that there is absolutely no way that I am prepared to do this.
 
       I would appreciate any comments on how exactly to be sure that
you are coeliac without a positive biopsy. I would also appreciate
advice on living GF in France. What follows is my potted medical
history so if you're not interested stop reading now!
 
--------------
 
       I first decided to try giving up wheat in June 1995 having read
that wheat intolerance can often cause IBS symptoms and I decided it
couldn't hurt to try it. I had had gradually worsening syptoms for
several years but took them to be fairly normal as my father is
exactly the same and has been for over 20 years (but more on him
later). Since I never dreamed that I could possibly be coeliac (I
understood the main symptom to be weightloss) I didn't consult my
doctor but just started by cutting out wheat for a few days.
 
       To my delight, not only did my IBS symtoms decrease but, even
more dramatically, the chronic acid indigestion which had been
plaguing with increasing intensity for the previous two years
completely disappeared. I was shocked because the acid reflux had got
to such a state that the previous November I went into hospital for a
gastroscopy (if only they had pushed the tube down a bit further and
done a biopsy while they were there!!) honestly believing that I had a
stomach ulcer because I was in constant pain. It turned out that I
didn't have an ulcer and I also tested negative for H. pylori
(bacterium which causes ulcers) but, because of the damage to my
oesophagus, I was put on 300 mg of Zantac (ranitidine) a day for 3
months to allow my oesophagus to heal.
 
       At first, I had to take painkillers as well as the Zantac and I
soon found that I was unable to take the Zantac in a single dose
because it "wore off" and even when I split it into 2 doses my body
always told me when my next dose was due! After the 3 months I was
still having symptoms in spite of the medication so the doctor said
try another three months. After 6 months of being on the drug I was
still no better and all my doctor said was that there were plenty of
people who had taken it for 10 or 20 years and there was no reason why
I shouldn't do the same!! I was quite shocked as I am relatively young
(some people would probably say very young!) and a life of taking
Zantac every day did not particularly appeal. However, there did not
seem to be any alternative until I found that, not having eaten wheat
for a day, my body wasn't telling me I needed my next dose of Zantac.
So the next day I delayed taking the second dose and didn't take it
because I found I didn't need it. Within a week I had stopped taking
Zantac completely!
 
       I  mentioned my wheat-free diet in passing to the doctor I saw
to pick up my prescriptions (I am a well-controlled chronic asthmatic)
who basically said "That's nice" but nothing else. When I tried
reintroducing wheat in July at a family party my abdomen swelled up
like a balloon and I had major acid reflux for the first time since I
had stopped eating wheat. I decided that I could take a hint and cut
out the wheat again. However, I didn't cut out rye and oats (I was in
fact eating them instead of wheat, particularly rye) and, although my
IBS was better, I still wasn't completely happy.
 
       I was looking in the library one day in the summer  for
wheat-free recipe books and found one which was aimed at coeliacs and
had a brief description of CD in the front. I was very surprised to
read that you can be coeliac but only suffer some of the range of
symptoms and not necessarily suffer weightloss. I started thinking
that possibly I could be suffering from CD after all and when I went
back to university I decided to see my doctor. First, however, I tried
ringing the (British) Coeliac Society as I had heard that they
published a list of GF brand-name foods but I was told that it was a
society for medically diagnosed coeliacs only. When I went to see my
doctor he referred me to a dietician who said that if I thought that I
was coeliac then I should cut out rye and oats as well. I didn't think
that this would make much difference but it turned out to be the
reason for my remaining IBS symptoms.
 
      Having decided that there was a possibility that it was CD I
asked my doctor to refer me for a biopsy and when I asked him about
the likelihood of any damage having healed (I had read on the Web that
healing happens in 6-12 months) he said that the consultant would
still be able to see something. However, when I finally got the
appointment with the consultant, it turned out only to be a
consultation and not a biopsy and was also not a particularly pleasant
experience. I tried telling the consultant what had happened up to
then (as I have described it here) and he made sarcastic comments
about it being "nice to have patients who have made their own
diagnosis" when I mentioned that I had had IBS symptoms. When he
finally came round to the view that I could possibly have CD he said
that it is much more common in Irish people (I was born in Dublin) but
when I told him that both my parents were actually English he said
"Well you find it in the Celtic genes wherever they are", showing
obvious displeasure that I should dare to question his judgement! He
told me that there would be no point in doing a biopsy as I had been
GF for so long so I should go away and eat wheat for 2-3 months and
then come back. I said that this was not acceptable as it would mean a
great change in my quality of life - I used to come home from
university at somewhere between 3 and 5 pm, lie down on the sofa and
go to sleep for a few hours, wake up and have a meal and then go back
to sleep until it was time to go to bed and then sleep right through
until morning and still wake up tired; also, of course, I didn't want
any return of either the reflux or the IBS. The consultant sent me for
blood tests (IgE and something else I think) but I wasn't expecting
any results from these as I had read on the Web that these only show
positive if you are not GF. When the consultant wrote to my doctor he
didn't even mention the blood tests so my doctor said they must have
been normal.
 
      Since seeing the consultant I have just tried to keep GF and
have persuaded my father to try it as well with great results! As I
mentioned before, he has had IBS symptoms for over 20 years and he was
also consuming large quantities of kaolin and morphine and antacid
mixture (separately!). Since stopping eating wheat he has noticed
dramatic improvements but he does not believe that it is "as simple"
for him as it is for me in that his symptoms have not completely
cleared - but he believes that Ryvita (rye crispbread, I don't know if
you have it in the US) doesn't affect him and he continues to drink
both branded and homemade (from kits) beer (NB the reason I was born
in Dublin was that he was working for Guinness at the time and I don't
think that he is prepared to even entertain the thought of giving up
beer!). He also says that he doesn't need any doctor telling him what
he can already see for himself i.e. that he shouldn't eat wheat. He
has, however, stopped eating oats as he had a bad reaction from
porridge.
 
       To further make my life interesting, as part of my degree I
have to spend at least 10 months out of the next 15 living in France
and I don't know how I will manage this successfully without medical
support. Maybe if I was sure one way or the other it would be easier
(particularly if I could "officially" contact the French coeliac
society) as at the moment all I can say is that wheat makes me ill but
I can't say for sure that I'm coeliac which might make people more
willing to find out for me whether or not a product contains gluten.
 
       Thanks to anyone who made it to the end of this!!
 
                         Emma

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