Information needed

[scousekitty]

Hi everyone, I am hoping that you lovely knowledgeable people might be able to help me. I have been recently diagnosed as coeliac, and have been off work for the summer hols (I work in a school). I am due back to 2 weeks and am going to have a meeting with my (rather unsupportive) line manager. I would like to give her some information about the illness so they can be helpful/supportive. Now there is loads of information out there but I was wondering if anyone knew of a site that I could find almost fact sheet type info? I don't want to give her too much stuff, but enough to explain.

Hope this makes sense, and thanks.

[Hidden]

Hi, I have CD and teach in primary schools. Coeliac Uk have some useful general info that you could give them. I found that I have had to generally be on the ball for myself about getting them to order in GF food for when I'm on a course etc and I gave up ever trying to have any food from the school kitchen and just took my own. In the staffroom, I took in my own toaster and labelled it very clearly as mine and for GF food only. The same went for any butter/spreads etc that I put in the communal fridge. I also brought it up at the first staff meeting of the year so that all staff were aware and also if there were any new staff taken on during the year. I do feel that we have to take responsibility for our own health and well being to a greater extent. In the classroom, baking had to be either done by someone else or we used GF flours etc which never caused any issues. Whilst working in Nursery where playdough is made, we made GF playdough.

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Oh, forgot to add....should they be unsupportive, then just point out that surely they would rather help you stay well than have time off due to being ill because the workplace couldn't be made safe. Should that happen, then Occupational Health would have a field day with them. I've never had any problems so really don't see why you should

[scousekitty]

Thanks for your advice. I already bring my own food in and keep it with me, which is working. The hardest thing is the "evil foods" that people bring in and put on the staff room table. However I am taking in a load of gf goodies for the start of term.

My main concern is with management, I have been quite ill over the past few years and until recently didn't know why. Apparently my illness' followed a strange pattern, so I was referred to Occupational Health, who told my boss that there was no medial reason for my absences. This went down well. I want o have the meeting and give my boss the information to try to prevent any future problems. Obviously no matter how hard I try I will end up getting "glutened". I just don't want the hassle of work being on my back as well. My head has a thing about being off sick - she apparently is never sick! Lucky her!!

[maggsmac in reply to scousekitty]

The evil food not a good description .. no food is bad ... I find discipline is the best .. I loved cakes pastries all that but no longer have or even desire these foods .. I did the GF biscuits and cakes .. but have now manged to resist these .. I never knew I had such will power .. People comment on my lunches saying they are healthy .. Well there is a first for everything ..

[FionaGFG Administrator]

Hi ScouseKitty,

In terms of your concerns they're valid. But I thought it might help you to know that my sister is a teacher and was often ill / tired and had issues with occupational health. After diagnosis things improved as her health improved. She managed to catch swine flu and Pneumonia yet her new head teacher and colleagues were understanding as she briefed them on coeliac disease and they understood that generally she'll be well as long as she doesn't eat gluten. She bring in all her own food and explained to her class that she can't eat gluten in terms that the kids understood. So much so that she often receives GF presents now at the end of the school year! School parties / xmas dinner are always tricky - you have to be proactive and either suggest somewhere that you know does GF food or just bring your own food and ignore requests for you to join the buffet food.

Here are some good sites for explaining coeliac disease to your line manager. If I were you I'd focus on the positive i.e. know you have a diagnosis you should have better health - here's what you will do - here's where the school can support you in helping to stay well and why you'll need to bring your own food in etc. Also explain that you'll only generally need a yearly check up at the hospital or with your GP so that shouldn't take time away from school very often.

Simple summary: patient.co.uk/health/Coelia...

Great summary: celiaccentral.org/Resources... *although they are American most of the advice is transferable for the UK

You can also explain that having coeliac disease means you'll be able to support any kids at school who have it and that can be beneficial for the children and their parents.

Strangely enough another teacher at my sister's school has just been diagnosed with coeliac disease and so they have more support together at their work social occasions. So you never know you may not be the only coeliac at school.

I would recommend you start taking some pre and probiotics and good multi-vitamins and minerals that contain: iron, VitD, calcium and especially magnesium as these are normally very depleted in coeliacs at diagnosis. They will help boost you and help keep your immune system healthy. Have a chat with your GP about what your current levels are and which ones need boosting the most.

I found after going GF I didn't get a cold in 2 years. So your immune system can re-boot itself pretty well after diagnosis.

[scousekitty]

Hi Fiona, thanks for your advice and the links. My aim in speaking to my boss is so that they can understand that now I know what is wrong with me - which is a great relief. Before a few years ago when my illnesses got worse I was generally quite healthy - even considering the germ infested creatures I work with ;-). I am going to do as you say and be positive with them meeting.

With regards to going out, I never really went out much, as I was usually too tired. So it's not a major issue, but if possible I will contact restaurants before hand, if not then I'll have a yummy gf meal at home. I am currently taking a full A-Z multi vit and do have an appointment with my gp next week. One issue I have is that my diagnosis if symptom only - I tried to continue my diet for the blood tests but became too ill and my doctor told me to stop. Hopefully I can find out what's next.

I am feeling positive about it though, as I am feeling so much better. I had become to think that life really did suck and that I should have been that tired and ill all the time. At 32 it's not what you want!

Thanks again for your help.

[sassyl]

Hi Scousekitty,

I'm a fellow teacher too. My experience has always been great at school, I think school staff are generally pretty good at inclusion because we do it for the kids so much!

My colleagues are always bringing in GF cakes and biscuits on their birthdays and generally people have gone out of their way to make GF foods for shared lunches.

One word of warning though - watch the cutlery drawer! Ours is full of breadcrumbs, despite the Head cleaning it out for me! Also, watch cups and plates if your staff room is anything like ours (we all run away when the bell goes and most things are just rinsed in cold water rather than properly washed).

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Scousekitty....does this mean that you haven't had an official diagnosis? This could cause a problem if other agencies ever do get involved if you are ever off work again. Could your GP perhaps write a cover letter for you saying that in his opinion you have coeliac disease?

[scousekitty]

Hi Jill, my doctor told me to eat a full diet for 2-3 weeks and then go for the blood tests. however after 4 days I was in agony and the symptoms were so bad that I was basically bed bound. I spoke to my doctor on the phone who told me to cut out gluten immediately. then when I went to see him he said that it was clear to him from my symptoms that I was coeliac. I am going to see another doctor at the practice this week to clarify things. I am lucky in that I have 2 really good doctors that I can go and see.

Sassy, thanks for the tip about the cutlery, I think I'm going to end up being OCD and take my own plates and cutlery in and bring them home every day. It's probably safer.

Thanks to everyone for your advice and help.

[FionaGFG Administrator]

ScouseKitty - it's well worth liaising with your Drs ref your diagnosis. I understand feeling too unwell. Like you my doctor advised stopping eating gluten before tests to me. I was concerned they may not work so I just reduced what I ate hugely to around soy sauce, one slice of bread a day vs the recommended amount pre tests. There is new research (largely in the USA) ref using a variety of blood tests / genetic tests and symtoms to diagnose coeliacs instead of the official biopsy method.

Perhaps your doctor can look into this. Without an official diagnosis other doctors often won't take coeliac seriously and you won't qualify for prescription food (although it's not that tasty it does help save on costs vs supermarket food).

Good luck on the journey - keep us focused. Don't worry there's an awful lot of 30 yr olds on here feeling like 90 yr olds.