YOU ARE SO LUCKY

[poshepoche]

I realise you think I'm mad - what is lucky about being celiac, or gluten sensitive?  Actually, nothing at all, except you are (most of you) in the US, I live in rural France where "gluten free" just doesn't exist.  Well, maybe the same supplier's gluten-free loaf is available at high cost from just a couple of the larger supermarkets, but that's it. No flours except wheat in different grades; certainly no desserts, cakes, biscuits, or ANY prepared gluten-free meals; no restaurants, cafes, eateries of any kind dedicated to gluten-free, or even having gluten-free alternatives on their menus. And the best help I've had from my (usually) very helpful doctor is " OK, avoid pasta as well as bread".  No tests, no advice, no specialist, no dietician, no assistance whatsoever.

Looking back over my life (well over half a century!) it would appear that I have been gluten intolerant all my life - when I was little it was "colic", then it was "anything to get out of doing the washing up" when I retired to the loo after practically every meal. then in my forties it was "IBS".  A colonoscopy 4 years ago seemed to prove I was not celiac, tho still gave no reason for the constant diarrhea, bloating, stomach pain, etc., or the depression, or the polymyalgia, or the rheumatoid arthritis, which it now appears are probably connected to the gluten intolerance. 

So, I'm starting from scratch, and thank God you are all here on the internet, able and willing to share your experiences, your symptoms, your remedies, your recipes, your tips, your actualities. Thank you, all of you: sufferers, medics, professionals, amateurs, everyone who contributes; I am not alone!

[cristiana]

Bienvenue - and my sympathies.   I love France but have only visited it once since my coeliac diagnosis and it was as difficult as you say, although I did find a few products in a really huge supermarket in Normandy but that was just before we left.  

I was really suffering with neuropathy when we made that trip.  We were in Bayeux one day and I was wondering why I had this awful tingling going on in my extremities.  Imagine my surprise when the lady in front of me in a food queue at a café was trying to show the gentleman behind the counter a document explaining "Je suis intolerante au gluten" (or maybe it was "Je suis coeliaque"? ) (sp?) and clearly the man hadn't a clue what she meant!   We got talking, it turned out she was English, had just been diagnosed, and had found this document on a website, presumably.  The great thing was I was able to have a chat with her and even discover that she had neuropathy, and her doctor had told her it was all connected.  That put my mind at rest and I was able to enjoy the rest of the holiday.

I do hope that awareness and recognition spreads to the more rural regions.  My mother-in-law lives in Italy in a very remote village and although Italy has really embraced gluten-free, it is more difficult in the countryside.   All the very best.

[manasota]

Poshepoche, you most definitely are not alone!  I am lucky to be in the USA in a medium size metropolitan area.  Yes, there are gluten free processed foods in every grocery store.  There are chain restaurants that advertise gluten free options on their menus.  BUT. I have never eaten in any of those restaurants; and I cannot eat the processed foods.  There are many Celiacs on this site who eat only whole foods they make themselves from scratch.  Difficult and time-consuming if you're not a cook/baker.  But, I assure you, you can do it.

When I was diagnosed, all my GI doc told me was, "Never eat gluten again".  That's it.  Everything I learned was from researching the internet.  This site has been a MAJOR help!  It is my primary support.

I buy certified gluten free almond flour online to make things for me to eat.  In fact, I buy nearly everything online so I can have access to the most certified gluten free items.  Many of the items I want are not available in my stores.  If you have a credit card, you can do it too.  You could even get one of those prepaid VISA cards if you don't have a credit card.

I also was diagnosed after 60 years of misdiagnosis and lots of suffering.  You aren't alone in this either.

Actually, we can't go out to eat because my husband can't be upright (sitting/standing) for more than about 20 minutes.  He must lay flat about 20 hrs/day.  (Degenerative Disc Disease. Titanium rods/screws.  Bone graft.)  I tell you this not get sympathy; but to show you that you're not alone in your suffering & frustration.  I make meals, call him to the table, and we eat as quickly as is reasonable so he can go lay down because he's sure to be in lots of pain by then.  We make it work,  We pretend we're in a fancy restaurant.  I've renamed my kitchen, "Manasota's Famous Gluten Free Cafe"!  We play our favorite music.  It's become our favorite restaurant. ;-)

You are lucky too.  It's all in how you view it.  Somebody your age (and mine) probably has lots of experience dealing with adversity.  We are lucky in that.  Younger people might need more help making lemonade out of lemons.  It can be second nature for us "old folks".

So, you're not alone.  You, too, are lucky.  You will be OK.  Just keep reading and asking questions.  Welcome!

[bartfull]

We are ALL lucky that our disease does not require surgery, medication, or frequent doctor visits.

And for those of us who don't care to shop online for whatever reason, if we want to bake we can always make our own almond, rice, tapioca, or potato flours. The instructions are online. (Isn't it great sometimes to live in this day and age?)

[Pauliewog]

Well, I feel your pain. I am in Japan were there is also NO knowledge of Celiac/gluten sensitivity. In fact, I was printing off documents to give to my doctor to read! I never eat in restaurants due to cross contamination. I can't tell you how many times I have had the conversation:

"Oh, you can't eat soy sauce because you are allergic to soybeans?"

"No, I can't have soy sauce because it has wheat in it."

"No it doesn't"

"Yes, it does."

At best I have been able to get people to understand I am "allergic" to wheat. So, I have become a cook and I make all my meals. I don't necessarily like it, but in the end I know I am eating healthier!

Check out iherb.com. They have very cheap shipping to Japan-- not sure about France. But I get my gluten-free soy sauce and a lot of other goodies from them.

[poshepoche]

Thank you all so much for your encouragement, I know I, too, am lucky it's nothing worse and can relatively easily be managed with careful reading of all labels.  I found tortillas on sale yesterday, which I had previously thought were corn, but reading the label, they were made from wheat flour!  Oh well, back to the kitchen.  I feel like a right moaning minnie, as some of you have so much more to bear, but thank you for sharing your lives with me. x

 

[poshepoche]

And, btw, this site has a collection of gluten-free restaurant cards in many languages, which can make it so much easier to travel and eat gluten-free:   Open Original Shared Link   Brilliant!

 

[Gemini]

4 hours ago, poshepoche@gmail.com said:

Thank you all so much for your encouragement, I know I, too, am lucky it's nothing worse and can relatively easily be managed with careful reading of all labels.  I found tortillas on sale yesterday, which I had previously thought were corn, but reading the label, they were made from wheat flour!  Oh well, back to the kitchen.  I feel like a right moaning minnie, as some of you have so much more to bear, but thank you for sharing your lives with me. x

 

I am surprised that rural France is not more gluten free friendly as French cooking is basically gluten free......except the bread and pastry part!  I find it the easiest cuisine to cook because so many of the recipes are already gluten-free.  Do you think the French are more resistant to changing the way they do things in restaurants because food is such a huge part of their culture?  I think the main reason that we have so much here is there is a lot of money to be made in the food industry regarding gluten free products and we have demand.

I would say buy what you need on-line.  This is what I do for some products. The internet is a great resource for finding things you need and there are tons out there.  Are there any restaurants where you live who you could ask if they could provide a safe meal, with your instructions? It does not have to be a 100% gluten free place. You can eat a completely safe meal if the chef understands cc...which he should if he is a chef with training.

You are lucky to live in country with so much good quality food. I have been to Europe many times and the food quality is really high!  I love French cooking!  They do food better than anybody.