Caitlin, Erin and EDIGs


Continued from Part 2 ...

Self education - and gluten
I decided to do a correspondence course to try to understand the working of the body better. I spent hundreds of hours on the internet trying to find answers. I realised that Erin’s first blood tests showed elevated anti-gliadin antibodies. As I understand it, this relates to gluten, and her maternal grandmother is a biopsy-diagnosed coeliac. We put Erin on a gluten-free diet and she made a vast improvement within days, but sadly this was short-lived.

Even though she had elevated levels in her blood and coeliac disease was in the family and she responded to the diet we had a very hard fight to get coeliac disease to even be considered. Coeliac disease wasn’t the answer but at least it suggested that the problems were food-related.

Munchausen’s threat
By this stage the doctors were telling me there was nothing wrong with Erin and that it was all down to me. Since receiving copies of my medical records I have found out that one of the doctors was considering Munchausen’s by Proxy. Indeed the social services had been called to a meeting about me and Erin without my knowledge or permission, despite the fact that concerns had never been raised about my parenting skills and I have never had any dealing with social services in my life.

No biopsy
The doctors still refused to perform a biopsy to find out if Erin’s illness was down to diet, and they still did not believe that anything was wrong. We were given every reason under the sun as to why they wouldn’t perform the tests and at one point I was told ‘it would be unfair to put her through unnecessary tests’. How fair is it to leave a young child in pain all the time and vastly sleep deprived?

Sleep deprivation
By this time the sleep deprivation was seriously affecting my health and I knew that if it continued I would be physically unable to care for my own child anymore. Between 26th December 2002 and May 2005 I had been averaging about three hours sleep a night. Seeing Erin in almost constant pain was heartbreaking and I was terrified that something was really wrong.

Diagnosis - at last
I managed to find a specialist in London who dealt with coeliac disease and who felt that further investigation was warranted. He agreed to see Erin along with a paediatrician in London.

At first our own consultant and GP were not keen on doing the referral but finally in May 2005 we travelled to London. Within 20 minutes we were told that there was no way of knowing whether Erin had coeliac disease unless a gluten challenge was undertaken followed by blood tests and then, if the results of the blood tests were inconclusive, an upper and lower biopsy. Finally we were getting somewhere.

The results of the gluten challenge came back negative so Erin was scheduled for an upper and lower endoscopy in summer 2005. Within two weeks we were told that Erin had eosinophilic colitis.

Eosinophilic Colitis
It was a very confusing and upsetting time. I had always thought it would be something that could easily be put right - by a short course of medication, or maybe a minor operation. This was something else.

As well as being poorly understood the disease could take on many different guises and be caused by all sorts of things. The joy of finally having an answer was overshadowed by the realisation of what it all meant.

The pressure that our family had suffered had been devastating, and now we had to pull ourselves together and begin a different fight.

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