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Original poster

Coeliac disease - help

20 replies

DSM · 11/01/2013 14:24

I've recently been diagnosed with Coeliac disease (after 2 years of illness I finally had a biopsy).

I have obviously been told to follow the GF diet, and that I would be referred to a dietitian. GP said dietitian will sort out my prescription so as yet, I do not have one.

Dietitian from the hospital called me yesterday. I have a 'group session' appointment.

Does anyone have any experience of this? What happens in a group session? Am I supposed to discuss my bowel movements with a group Hmm

Will they really do prescriptions in a group setting, doesn't it need to be more personally tailored? I am really confused.

OP posts:
sannaville · 11/01/2013 20:47

A few friends have cd and their prescriptions are the same ie a certain amount of pizza bases, bread, pasta etc a month so everyone will prob get the same

RockinD · 12/01/2013 20:45

Group session will probably be general dietary advice only.

If you want to discuss your BMs, you might need a consultant appointment.

Hoophopes · 14/01/2013 00:08

Hi - I didn't have a group session, just a one off session with dietitian ... who explained what foods contained gluten and therefore to avoid for life. Dietitian doesn't deal, in my experience, with bowel issues (that is the person who did the biopsy or diagnosed you). It wan't the dietitian who did the prescription, but the GP - where I live the Gp gets the pharmacy to sort out the prescriptions so I just give a list of what I would like off the allowed list each month to the pharmacy.

For adults aged 18-65 and female (not pregnant or breastfeeding) you have 14 points allowed each month. Each item has a point allowance next to it - so one loaf of bread is one point for eg.

If you log onto the main companies that produce gluten free foods on prescription they tend to send out freebies to newly diagnosed patients - you do not need a prescription for this and get to try out some products for free!! Juvela and Glutafin are two I recommend. I also like Orgran's pasta range. You can do this before seeing a dietitian.

Pinot · 14/01/2013 17:12

YY, it's the GP that gives the prescriptions out.

Original poster
DSM · 14/01/2013 17:21

What's YY?

My GP hasn't given me a prescription. She said I'd get this at the hospital, which is what I am concerned about as surely they won't issue prescriptions in a group session?

OP posts:
Pinot · 14/01/2013 17:24

yes yes.

TBH, I'd ask for a GP who is more informed about coeliac - you'll need support going through this transition.

Original poster
DSM · 14/01/2013 17:44

So what should I do? See a different GP now? Or wait until after this appt?

My GP's surgery used to be great but has become shockingly bad over the years. A few weeks ago I saw a locum, as my cyclizine had run out, and I wanted a new prescription. She told me she could only prescribe me buscopan Hmm

I had to explain to her that a) they do different things, and b) I don't have IBS.

OP posts:
Hoophopes · 14/01/2013 19:03

I didn't get prescription from the hospital, dietician's cannot prescribe. However your GP is maybe waiting for your dietician group session to tell you what to order before issuing it? For instance I was told it would help to order the higher fibre products. Also, confusingly some gluten free products are not suitable to all coeliacs - such as ones containing oats, and glutafin make products with and without codex wheat starch!! So seeing dietician can enable you to know what is safe for you (I was told no oats for one year to start with), perhaps try some free samples THEN go back to Gp armed with the information you need. If you don't know what to order then cannot go to Gp. Dietitian will know how your area does prescriptions (for eg I saw gp who filled forms in and authorised me to sort with one local chemist!!)

Do look up the Coeliac UK website also - I pay to be a member but much of information is free on their site. They can send you a small handbook that tells you what Supermarket foods are coeliac friendly (like tins of soup, frozen foods etc - which brands you can eat!)

Original poster
DSM · 14/01/2013 19:11

I joined coeliac uk a while ago, have had my 'basic' pack from them but not the handbook yet. The site is very good though.

So.. How, in a group session, will a dietician tell me if I am able to eat oats/codex starch?

OP posts:
Hoophopes · 14/01/2013 19:23

You can ask the direct questions that all would be happy of answers - should newly diagnosed coeliacs eat oats. Or just oats labelled gluten free as opposed to oats not labelled. The codex wheat starch I just mentioned as Glutafin produce 2 ranges of gluten free and I didn't know which to order and I always forget which is the one free form all things just in case.

where I live am meant to see a dietician once a year - not been seen for two years, contacted them to be told "we are busy and behind" so have given up!!

higgle · 15/01/2013 16:05

My DH is coeliac, though he had never had a final diagnosis as he won't eat wheat to become ill so they can test him again having gone through the unpleasant symptoms too many times before he discovered what was wrong.

We eat well as a family and ( because no diagnosis) don't get prescription stuff. We make gluten free bread in our panasonic breadmaker - much cheaper and nicer than shop bought stuff. I make puddings with round almonds instead of flour and we have more or less given up on pastry. Things like rich fruit cake, crumble toppings etc. are fine made with gluten free flour ( I always do a Christmas pudding and cake to Delia recipes with g/f flour and you can't really tell). DH tolerates gluten free pizza ( Sainsburys quite nice, Tesco rubbish) but I would make pizza base for him in the breadmaker if he wanted. There is a Phil Vickery gluten free cook book that has some nice recipes, I have not tried his special flour mix, just stick to Dove's Farm ( thier pasta is good too)

Original poster
DSM · 15/01/2013 18:03

Thanks, though I appreciate your help I have followed the GF diet for some time now (I knew I was coeliac for 2 years before official diagnosis, like your DH, except I went through the 6 weeks of gluten eating illness to get formally diagnosed).

I am just really looking for advice on what to expect from the hospital/dietician.

OP posts:
Pinot · 15/01/2013 18:11
nutmegthespringerspaniel · 15/01/2013 21:41

Have you had a Dexa scan yet ?

If not, then I'd hope that the hostilepile appt will see you offered one

Original poster
DSM · 15/01/2013 21:47

What's a dexa scan? Sorry I haven't even heard of this!

OP posts:
denialandpanic · 16/01/2013 16:38

dexa scan looks at bone density. Should be offered to all coeliacs but dp had to ask for his and turns out he has early osteoporosis and is now on high dose calcium and d3. You have to push in the NHS these days. Read the Nice guidance and decide what you should be getting then insist.

Original poster
DSM · 17/01/2013 00:19

Where do I find this NICE guidance? What is it?

OP posts:
herewegoloubylou · 17/01/2013 00:23

Interesting abou the Dexa scan. Thanks.

denialandpanic · 17/01/2013 20:51

on phone so can't link should come up if you Google UK coeliac nice guidance

babybarrister · 18/01/2013 20:10

This reply has been deleted

Message withdrawn at poster's request.

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