Life's been tough for me, in more ways than one.
I won't get into that, but I think it's fair to say that being diagnosed as a Coeliac after 6 years of uncontrollable ill health, I feel the World has changed for me. (or at least my Life has), and for the better!
If you're reading this, you're probably either a diagnosed Coeliac already, or are concerned and have turned here for some advice.
This page only offers general avice, so for more info please feel free to contact me. (bottom of the page)
When I think of this Disease, all I remember is the neausea, the constant nausea, tiredness, bloating, diarrhoea and general ill feelings. I described it as a permanent hangover, it was awful.
Getting everyone around me to believe I was ill was something else, to them it was "just another day she feels sick again". Times were tough.
It finally all happened this year when I saw my doctor and finally begged for the test after being told by another doctor several times (and I quote) "you're not skinny enough to be a Coeliac".
I was just so ill and ballooning out like I'd eaten 15 bigmacs a day. I was anaemic, the diarrhoea was happening everyday, headaches were coming thick and fast, and I just didn't have an ounce of energy. Being a single parent, this WAS tough.
At this point I was on 3 anti sickness and 3 anti diarrhoea tablets a day and nothing was working.
The GP sent me for a blood test, it came back positive, and within a month I'd had another blood test, had a gastroscopy to take biopsies, seen a dietician, consultant, another GP, Nutritionist and all the rest of this awful diagnostic process.
I was lucky to have it all done so quickly, but I'd been on a waiting list for 21 months for that gastroscopy, it just so happened that now they had a decent reason and an empty slot for it. Please don't be disheartened if you're still on a list for one, it will happen. REMEMBER, do not come off gluten until you have had the biopsies taken, otherwise it will show a negative result.
That was in February this year.
I've since been for a bone scan and an ultrasound of all my internals (liver, kidneys, abdomen, etc) which both came back fine thankfully, but shortly after that, due to personal circumstances and a family bereavement, I decided to take the plunge and move to France to be with my parents who retired there 5 years ago.
I had some small savings which would get me through for a while.
It's the best decision I've ever made, my 2 children are fitting in really well and there's a lot to take on board here, but now it comes to the crunch....LIVING AS A COELIAC IN FRANCE.
I've seen 2 doctors and 2 pharmacists, and both have said they dont know any Coeliacs here...kind of stands to reason really, they dont have burger king, KFC, kebab shops and chinese take-aways here, so people don't naturally overload on junk (please don't take that as gospel, just my personal observation).
So, if you're already living in France, you will be aware that just seeing a doctor costs 22 euros.
(as a guide, 0.65p to 1 euro so 15euros is around £10)
(UPDATE: 19th May 2008, 0.79p to 1 euro, so 15 euros is equal to about £12)
This could pose a slight problem, because if you are aware, in the UK, diagnosed Coeliacs get so many items a month, free, on prescription. Over here, I'm already paying just for an appointment.
Let's face it, we have a complex disease, we must eliminate gluten from our food yet maintain a staple diet. Our bread costs around £3 for the equivalent of 1/3 of a loaf of normal bread.
So, yes it's fair we get some or all of those items for free.
Living in Creuse (dept 23 for those interested), in a small hamlet in the middle of beautiful countryside, you can imagine people are scarce enough, let alone coeliacs who are probably realistically 1 in 1000 here.
So you can imagine I was completely gobsmacked to go to my local supermarket (LeClerc) and find a few small shelves dedicated to "sans gluten" products!!!
So after speaking to my local pharmasist, it seems he had a little dusty catalogue in the back room, dedicated to gluten free food on prescription...aha, so it does actually exist!
The people out here are so darned helpful, it's VERY refreshing!!!
My next step was to apply for a "carte vitale". This is a medical card that gives you the reimbursement.
As I'm living here officially as a French Resident, I MUST have one. If I don't, I will be eligible to pay 100% for ALL my medical needs with no reimbursement.
It's easy enough to apply, I've listed the link below, but just go to your local Securite Sociale Office, there should be a CPAM Office there, I'll advise you now, you need: Birth Certificate, Passport, at least 1 utility Bill showing your French address, your French bank statement and your income figures for the previous year at least.
Don't bother applying if you haven't got all that, as they will just chuck you out (not literally!), I did this the first time, without income figures for the last year, they sent me home.
Second time round, I got it right...I now have my "attestation", which shows all the names of the people covered on my carte vitale, with the numbers I need to fill in any forms for reimbursement in the meantime until I receive my card.
As of the last few months, the Carte Vitale has changed slightly, and now you need a photo for it, so that's my next step.
If you are aware, in France, you can get a 65% reimbursement on medicines, consultations, treatment, etc, and if you pay into insurance or have a "top-up" (which I do), you can get 100% reimbursement.
This differs if you are working or self-employed. I am neither at the moment, so what I am saying applies to those unemployed, parents, single parents, retired persons, and children.
I qualify for 100% rimbursement due to my financial circumstances, and the fact I'm a single parent with 2 children in tow.
I can have a threshold of 45euros reimbursement a month for my gluten free food.
I see my doctor once a month who writes a prescription..."produits sans gluten pour une mois"
I've yet to do this though, as I've only been here 7 weeks, but it's all coming together finally. It IS hard work, and quite a lot of paperwork (no more than England though), but let's face reality, I need food, I can't have gluten, and I feel it's wrong to be charged for having this disease, but I want to live here, so I have to abide by their rules. When in France, do as the French do, and they DO pay for Healthcare out here.
Hasn't worked out too badly for them though, as waiting times are reduced substantially, results from tests, etc are given to YOU the same DAY, and by far, the French Health System is far superior to any other in the WORLD.
It is true...you do get what you pay for.
I hope this page has helped somewhat, I've just put it together as a reference really.
I shall try and update frequently.
I'd love to hear from others, please share your stories with me, if you're coming to live in France, get in touch!
I'm quite fluent in French now (not that I have a choice living in the middle of rural France), so if I can be of assistance, don't hesistate to contact me.
**** **** UPDATE 19th May 2008 **** ****
In the last 2 months, I got frustatingly bored of waiting, waiting and more waiting, so I decided to take a trip to CPAM themselves and find out what the hold up is. They told me they had been waiting for me to "register a treating doctor". I had already done this, but my doctor hadn't posted it, or maybe didn't understand me when I asked. Either way, I was upset, sure, but they explained it was a simple mistake but they couldn't even look at my case without this form.
OK, so I went back to my doctors, ecplained the situation, she sent off immediately the "treating doctor registration form" all completed and signed by both. The form is free.
So. about 2 weeks later, I got a wonderful booklet and a new ATTESTATION stating that I now have 100% cover for any problems that occur due to, or treatment for, COELIAC DISEASE (Maladie Coeliaque).
Utterly pleased and nearly jumping for joy, I went straight to my local pharmacy, picked up a Valpiform booklet, promptly made a doctors appointment, went back there to make my prescription (ordannance), hiked it across the road to the pharmacy and within 3 days had all my scrummy food, breadmixes, biscuits, pizza bases, you name it, I had it...all for about €32!
It would have been around €77 but the re-imboursement is worked out very differently with regards to food.
For example,a loaf of bread in the supermarket may cost the average person €1.20, and it would cost me €3.95, the reimboursement on this particular loaf, is around €2.70.
I asked the pharmacist about this and he explained that the re-imboursement is differently calculated on every single gluten free product, in ratio of what I would pay normally, to the respect of how much I have to over-pay for my disease. It's not free, the food, but in respect I would normally pay for bread, pizza bases, etc so it's worked out rather fairly I think.
All my treatment, scans, further medicines, tests, etc are all free.
So I get a level of €40 re-imboursement a month, but there is no limit to the amount of food I can order.
I'm going to post some links now, be aware the majority are in French but if you need help translating, email me, I'm happy to assist!
Coeliac UK www.coeliacuk.co.uk
French Coeliac Association www.afdiag.org
Popular French gluten free Brand www.valpiform.net
Association of European Coeliac Societies www.aoecs.org
CPAM (L'assurance Maladie, Securite Sociale) www.ameli.fr
I can supply printable menu cards in French, in fact in any Language.
I can also supply a list of Ingredients and foods in France that you can and cannot eat. (A little like a shortened version of the Coeliac UK Book)
If you would like the above, Please kindly donate first then please email me: shazzidy@aol.com