Melissa’s Story

Hi Peter,

After reading Elizabeth’s story, I don’t feel so ‘hard done by’!!


I gave birth to my second child, Owen in 2004. He had an awkward birth, and thought his initial ‘crankyness’ was due to this.

Well, we live in remote outback South Australia and access to specialist care is tricky. How Owen and I survived on no more that 2 hrs sleep at any one time for 12 months, I don’t know.

He had so many abdominal symptoms, I wondered if he had a grumbling appendics or a perforated bowel after swallowing a toy or something, but the doctors found nothing wrong.

It was so heartbreaking to try to hold him whilst he writhed in pain and cried. He would get so angry and lash out and scream too – all he wanted to do was sleep.

His growth patterns showed he had crossed two percentile lines on the new World Health Organization (WHO) growth charts by not growing and gaining weight at the expected rate, despite being breastfed until he was two and a half years old.

Two days after his third birthday I was desperate, and took him off dairy and gluten foods. Within 3 days, my boy was sleeping 12 hours a night!!!! No crying, no pain.

I reintroduced dairy after two weeks, without any setbacks. After a month of being gluten free, he had put on almost a kilo in weight! I just want to cry when I think of how much agony he could have been spared, probably from a very young age.

Now we have gone about things the wrong way around, and have only just had access to a pediatrician and explained our story. He feels Owen has at least an intolerance, and possibly coeliac’s, except he needs to go back on gluten for a month prior to his bowel biopsy.

I am really torn between getting an official diagnosis and just staying gluten free. I know when he has had gluten accidentally, his reaction is predictable and dramatic, usually about six hours after ingestion.

I would like to see provision for adequate pain relief and sedation for the month that he has to be on gluten, other wise I don’t think it is a humane thing to do.

Anyway, I now concern myself with trying to learn how to cater for Owen, and how to incorporate enough fiber in his diet. He was always a weet-bix kid every morning, and I find breakfasts the hardest thing to cater for.

I don’t care, it’s worth it to see him happy, growing and healthy.

Thanks for the opportunity to tell our story.

Melissa

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