Coeliac referral is just the beginning

We had about a week to wait between the letter from the GP asking us to make an appointment, and the day of that appointment. I spent that time acting normally to my daughter, but privately reading everything I could on coeliac disease and quizzing my Scottish friend by email on every little details of her daughter’s experience.By the time we went back to the GP I was sure it was coeliac disease, but in what has now become known, for good reason, as “a university challenge”, my husband was confident I was overreacting and predicting she’d just be prescribed a few vitamins and would perk up in no time. Still sure I knew everything, I expected to walk out with a coeliac diagnosis, all sorted. I didn’t see a coeliac referral to the specialist coming our way.

Bum information

As we walked in to the surgery, before bottom had made contact with chair, the doctor was asking us if we’d heard of coeliac disease. She explained a bit about it, all of which I was expecting but which was news to Tamsin. She accepted what she was being told without fuss, but much of it was rubbish, for instance:

• free prescriptions for the rest of her life
• she’d probably be able to eat a bit of gluten – she’d have to try it and see
• she should stop eating all gluten straight away just to be on the safe side

Complete rubbish, all of it. That last one is the worst in the short term. Anyone waiting for a coeliac referral MUST continue to eat gluten, otherwise the tests may show a false negative which means no diagnosis and therefore continued gut inflammation. The middle one’s plain wrong too. Post diagnosis, eating any gluten whatsoever can set up a reaction that can take the best part of a year to heal. The first one is just a pain, but she will at least get free gluten-free foods on prescription until she’s 18.

Hospital testing

Fortunately, being 14 Tamsin was seen by the paediatric outpatients, which has a shorter wait than adults’ and is more friendly. Tamsin’s a smart, confident girl, but easily cowed in medical matters – precisely how much we were about to find out. She was weighed and measured by a friendly nurse, then we went in to see the specialist (be still my beating heart – I hope we get him next time!). He took a general history from us (all of which we’d already given to the GP) and then wanted to take bloods, at which point all hell broke loose.

To cut a long story short Tamsin had a panic attack for about 10 minutes but then briefly the fight went out of her and the doctor was able to take the blood. At this point Tamsin became hysterical for about 20 minutes, to the point where the doctor told me he was seriously concerned she was going to have a fit. Ultimately she calmed down and they let us go, but she can’t go through that every time.

The blood test was sent away for gene analysis – yes, there’s a gene for coeliac disease. It had to go away to a big regional hospital (we live in something of a backwater) but we were told to expect results within a fortnight. I rang the hospital several times as two weeks loomed as I was desperate to know, and eventually, after three weeks, I was told that the results were back but that we couldn’t have them until the specialist had seen them, but then he would ring us. The following day (inevitably, when I was out), we got the call. It’s a good thing I wasn’t content to wait for the written confirmation as 10 days later we still haven’t had that.