AUTISM, DIET, AND INFLAMMATORY BOWEL DISEASE

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AUTISM, DIET, AND INFLAMMATORY BOWEL DISEASE

 

By Vivian McKelvey

 

vivianr

 

In 1997, I wrote an article for the journal of the National Autistic Society in

the UK about how profoundly my son, Alec, had been affected by a gluten and

dairy free diet. Basically, being on the diet had meant the difference between a

life in the mainstream (in all senses of the word) and a life with seriously

disabling behaviour. At the time, we had been convinced by the research of Paul

Shattock at the Autism Research Unit in Sunderland, UK that our son suffered

from the effects of opioid peptides derived from proteins in the diet. We did

not, however, know why this was happening. Now, several years and many

investigations later we are beginning to understand why he is the way he is.

 

Today, Alec is 11 years old and completing his sixth year in mainstream school.

Recently, our educational psychologist tested him and found his reading,

writing, and spelling at age level and his maths abilities to be one year

advanced. But even now, when he has gluten or dairy accidentally, he loses all

eye contact and regresses in behaviour by several years. When he is strictly on

his diet (as usual), his behaviour and abilities are in sharp contrast to how he

used to be. When he was two, he was so severely autistic that I was told by a

renowned developmental paediatrician in the USA, that Alec would need to have

special education for the rest of his schooling. When Alec was three, his

tantrums were so severe that I could no longer take him for haircuts or to buy

shoes (or anywhere that required walking for that matter).

 

Clearly, something catastrophic had happened to him between the ages of 14

months and three years. Before then, he had reached all developmental

milestones with flying colours. He was gregariously social around the age of

one and could say words in both French and English. And then, slowly but

steadily, it all fell apart and he began the decline into autism. When he was

three and a half, we tried the diet out of sheer desperation. The improvement

was rapid and dramatic.

 

But we were haunted as to why the diet had such a profound effect on him. Why

was it that one bite of a wheat biscuit could turn him back into a very autistic

person? Something had to explain this. And then I saw Dr. Andrew Wakefield

speak at a conference in autumn 1997. He explained that he had found a new

bowel disease in 12 developmentally disabled children. His presentation

provided a new possibility, which could explain what we had been seeing. At

that point, I could not move fast enough to get my son seen by a paediatric

gastroenterologist.

 

Within a few weeks, we had an appointment with a paediatric gastroenterologist

at our local NHS hospital. For the first time, I was optimistic that, finally,

we would have the answer as to why we were bound to follow this difficult diet.

I was hopeful that we could receive real medical treatment for what always

appeared to me to be a medical condition.

 

After a preliminary blood test, we were booked in to spend the day in hospital

for an intestinal permeability test. But this was not before we were told that

Dr Wakefield was “out on a limb” and that the tests would be performed, but that

we should abandon the diet as there was no scientific evidence to support it.

Not surprisingly, one month later, we were sent a letter stating that “no

abnormalities were found”. Case closed.

 

At first, I was resigned to accepting these results. After all, this had come

from a specialist, a doctor of the highest credentials. But the effects of the

diet were indisputable. Alec was now in mainstream school and it was thanks to

his diet. I had to persevere. If he had a bowel disease, he should be getting

treatment for it. I managed to get a referral to Dr. Wakefield’s colleague,

Professor John Walker Smith.

 

The first thing Professor Walker Smith did was to order an abdominal x-ray. He

said that the previous children had shown such severe constipation that an x-ray

was useful. I was convinced that Alec had no constipation or any other bowel

disease symptoms other than dependence on the diet. My husband and I were

shocked when the x-ray showed severe constipation. Alec’s regular bowel

movements were just what material managed to squeeze around this blockage. He

had only recently become verbal again and in fact referred to a pain in his side

occasionally.

 

But Professor, I said, “Why did his intestinal permeability test at the other

hospital show no abnormality?” “That test is used to determine permeability of

the small intestine. Your son and the children we have seen have major problems

in the large intestine,” he replied. And the large intestine is exactly the

location where gluten and casein would be ingested in a normal person. He also

explained that the standard blood tests for immune function are not

comprehensive enough to reveal problems in the “T subsets” which can be

abnormal.

 

We scheduled a colonoscopy, which revealed that Alec was suffering from a subtle

form of colitis. He was put on mesalazine and prescription laxatives to relieve

the blockage. Within six months of steady improvement, he was succeeding at

school in ways we never thought possible. He designed the cover of the school

play. We began to live again.

 

Looking back, it makes so much sense that he had a serious underlying medical

condition. But now we can understand it and control it. His diet can be

explained to anyone based on the fact that he suffers from colitis. It has

changed our lives. I will be forever grateful to Paul Shattock and his team at

the Autism Research Unit in Sunderland for putting their dietary ideas on the

net in 1994. And the dedication of Dr. Wakefield and colleagues have given us

true hope for the future.

 

My advice to any parent reading this story would be:

 

In some cases, the symptoms of inflammatory bowel disease such as colitis can

be very subtle. Especially if your child is non verbal, they could be suffering

without your knowledge.

 

If you suspect your child might have this condition, it is vital that your

doctor is made aware of the limitations of some of the standard diagnostic

tests.

 

One only needs to read the press these days to realise that bowel disease is

gaining interest as a possible cause for some cases of autism. So far, Dr.

Wakefield has found the condition in 170 autistic children (99% of those

investigated). Given that these cases were self-referred, one wonders what the

incidence is of bowel disease in the overall autistic population.

 

 

 

 

 

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