Have hope - there is light at the end of the tunnel. I have had,
and still have, many problems relating to food - but at this time
last year it was doubtful whether I would even see the year out.
I am 64, an ex-nursing sister, and have multiple sclerosis. I have
always enjoyed life and over the past years have become very involved
in caring, disability and Quaker issues.
Three years ago after being prescribed aspirin statins and betablockers for high
blood pressure/cholesterol levels I began to have severe food and allergy problems.
Previously I had only been allergic to fish and penicillin, although I did carry
Doctors refused to believe that I could possibly be reacting to so many foods
despite an anaphylactic episode and an emergency hospital admission. I frequently
had tingling or swollen lips and tongue, breathing difficulties and sometimes
was unable even to swallow water. These were not panic attacks or hysterical
Ditching the drugs
Two years ago when in hospital for tests, a South African consultant, here as
a locum, suggested I come off all medication to see what would happen. As a result
all heart problems, blood pressure and muscle pains cleared. By this time I was
on daily antihistamine tablets but after discharge from hospital we were left
to cope as best we could with the worsening food symptoms.
Left to cope alone
My husband and I felt totally alone - isolated and abandoned. What would the
future bring? It was a very dark time indeed.
We do have wonderful GPs who would see us in emergencies but one could feel their
frustration at not being able to help. They told us ‘We can only be advised
by specialists who don’t know what to do themselves.’ There is only
one part-time allergy specialist in Scotland. He was in Glasgow and I was too
ill to travel even if an appointment was available.
Starving to death
After losing 8 stones weight my muscle tone was poor and physically I was very
weak and limp. My clothing was smaller by 12 sizes. My husband and I were at
the end of our tether. I had no quality of life - I was just existing. My funeral
service was planned, and death would have been most welcome.
It was at this point that the charity ‘Action Against Allergy’ gave
me details of a state registered dietician in the local private hospital who
had a special interest in people with food allergies and intolerance. When all
hope had almost gone she threw us a lifeline.
Finding the formula
After a full consultation she said that I needed to start on elemental
formula feeds immediately. The proteins in elemental formula, which
are used mainly for ultra- allergic babies, have been broken down
into their constituent amino acids so that there are no proteins
left against which the system can react.
I had to stop the six foods which by then was all I was able to take as she was
uncertain as to which of them was still causing reactions. She wrote to my GP
for a prescription and asked him to refer me to a gastroenterologist who had
a special interest in nutrition. His private waiting list was even longer than
his NHS list!
My body had been so malnourished for so long that it would only accept a very
low dosage of the formula (I used the infant formula, Prejomin) at a dilution
greater than recommended.
Very gradually I increased the quantity by two and a half grams each day, or
according to tolerance.
There is an adult formula more familiar to doctors, and used by hospitals, called
Elemental 028 Extra Original SHS. It nearly killed me after only 131/2 grams.
My ‘urgent’ appointment with the gastroenterologist for hospital
admission took six months so, without Prejomin I would not have survived. My
GP said, on one visit, ‘I
hope we get you in in time.’
My husband and I just looked at each other.
When eventually I was admitted the consultant wanted me to receive hospital formula
(to which I had already reacted badly) by nasogastric tube, then they would give
me a percutaneous endoscopic gastrostomy (PEG).
I refused as by then I had gained almost one stone in weight, my muscle tone
was good and life was looking more positive. Also my faith in modern drugs and
treatment was shattered. As it was the drugs that had made me ill I was very
reluctant to accept more interference when healing was taking place.
After many tests it was confirmed I had multiple food and drug allergies - as
my husband and I had been trying to tell doctors for so long. The consultant
said that my body appeared to have an adverse reaction to food and only appeared
to tolerate nutrition in the elemental form. I was also salicylate sensitive
but he didn’t know why these reactions had occurred.
Getting better - and better!
Living almost entirely on the elemental diet for 18 months has allowed my digestive
system to rest and gut
healing to occur. I feel
better now than I have felt for years. As a bonus, the multiple
sclerosis has improved dramatically, and I now have full use of hands and arms,
increased mobility indoors and better bladder control. The optician can’t
believe the visual improvement, my finger and toe nails are growing again and
my hair is thickening.
In April I decided to try taking FOS (fructooligosaccharide) powder from Biocare
(dosage one rounded teaspoonful a day). This has helped my body to accept a few
foods again. It will be a slow process and I have been told that I will be on
elemental formula for a very long time but I look forward to the day I will be
able enjoy the superb recipes which appear regularly in Free From Recipes Matter.
More formula please
Too many people are, I fear, struggling to exist on too few foods on a minimal
rotation diet. As a result
they end up malnourished and less able to handle food.
My consultant wrote (and other professionals would agree) ‘The number of
patients who have to go on to elemental diets is extremely small. The vast majority
of people can be managed by other methods and do not have to see an allergy specialist.’
I disagree. It appears to me that many professionals are unaware of elemental
diets and their value, even in the short term, for people with multiple food
Do please contact me if you wish to have a chat. An email to Foods
Matter will be forwarded on to me. I feel so fortunate.
First published June 2006
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