How Many Coeliacs at Your Practice?

[philaustin]

I just got a reply from our local NHS public liason office regarding a letter I wrote asking about what I should expect at my 'annual review'. I had an appointment for a 'review', but when I attended it my gp didn't know why I was there or what was expected of him.

All a bit embarrassing really, but just down to the usual lack of communication between all of the medical folk and their seperate departments who reluctantly have to deal with us.

Anyway, one of the reasons given for nobody knowing who was supposed to do what, where, when and why:

"The practice have only got the one patient on gluten free foods. "

I think that could be me.

If 1% of the population is a coeliac, there can only be around 100 patients at our practice.

So why do we have to wait so long for an appointment?

[sassyl]

| wish you could register with my doc. Recent conversation...

Me: when I had my bloods done did you take Vit D? Just I was here last year feeling rubbish and here I am again. As it's Autumn, I thought it might be relevant.

Doc: No, do you want one? We can do all your bloods again too, it's been a year.

Me: Yes please. And can I get my son tested for CD? I'm IgA deficient, so can you test him for IGg EMA and IGg tTga as well as IgA in case he is too.

Doc: Yes, have a double appt. What was that you wanted... IGg... [writes on notes] Do you want his Vit D too?

Me: Yes please!

Doc: And how is your new bread working out? Do you want another script sent to Sainsbury?

....

I love my doc!

[philaustin in reply to sassyl]

Thanks Sassyl.

I think tTga stands for tissue transglutaminate, doesn't it? As for the others, you've lost me!

[Aitch in reply to sassyl]

Wow I wish I could register with your doc. My bloods came back positive for CD, but I had to ask for a biospy and then arrange it myself! when the results came back the doc looked pleased with himself that HE had worked out that I had CD and then sent me on my way. Its been six months and since then I have had to find my own dietitician and have bascially researched all about CD myself. My doc has been less than useful to me.

[Jacks]

Hi Phil

Apparently there is me and another person. The other person joined the practice already diagnosed, so no wonder they found it difficult to diagnose me (a locum eventually did). Don't know how many people go to my practice but there are 7 doctors on every session. Hmmm.

[philaustin]

I wonder where the information about the number of coeliacs registered with each practice is kept. I only found out by accident.

Is this type of informtion available to the public, or Coeliac UK, or the government?

[Irene Administrator]

Did you see this earlier blog on 'How many coeliacs in the UK' Phil?

glutenfreeguerrillas.health...

It had shifted down the wall to page 2 of the Blogs.

The bottom line is that no-one seems keeping any records in the NHS. Perhaps the food manufacturers have got their own special agents keeping track. They certainly seem to think they'll get a good return from the Gluten Free £.

[philaustin]

Thanks Irene. I should have searched the blogs before firing off my own. I've been through the blog "How many coeliacs in the UK".

Scary stuff.

Smacks of a big cover up, like second homes for MPs and Phone Tapping. Would make a good film plot. All good stories contain some reality.

Now there's an idea for raising awareness...