Gluten Making Me Uproot Myself

[LivesIntheSun]

I'm writing this because I'd like to share a difficult position I'm in and to see if anyone else has got through a similar situation or has any words for me.

I gave up gluten 4 years ago on the advice of a nutritionist. Before that I had been clinically depressed since childhood, I had canker sores constantly (negative biospy) and was so tired that my social life was nonexistant and I could only bring myself to do an undemanding job (sleeping before, after and during work). After giving up gluten I was able to come off all my meds, no longer depressed, no longer irritable, wide awake all day and able to work hard all day and go out at night, no canker sores unless glutened- you get the picture. A whole new life! However, I also suffer from SAD (seasonal affective disorder, I'm from England) and even being gluten-free couldn't shift that, so in order to complete my wellness I moved to Colombia, South America, two years ago (I had spent a lot of time here in the past and had work possibilities and friends here).

However, things have not been all rosy. The climate is fantastic, I have wonderful friends and a very enjoyable social life, my work life is blossoming BUT there is gluten in EVERYTHING. Food labelling is not a true representation of what is in the food. Awareness of celiac disease is zilch here, because manufacturers of a dazzling array of foods put flour in to bulk products out (powdered milk, soya milk, corn products, hot chocolate, instant coffee, vitamin tablets, packets of nuts are cross contaminated). I cook 99% of my own food from scratch, which is bloody hard, as I work more than full time, but I can't prepare absolutely everything I eat in my whole life from raw ingredients. I've stopped eating in restaurants after being glutened having been assured that an item didn't contain flour- either people can't be bothered to check or just want to make a sale. I'm getting glutened every week or two (if its mild then I feel exhausted and irrate, if its more serious then I get an ulcer in my throat and a big mental wobble, aching joints and narcolepsy-like symptoms for a few days).

So I am coming to the conclusion that I will have to uproot myself from my life in Colombia and live somewhere with proper food labelling. I'm 31 and I've come through hell to be where I am now, and I'm worried about developing another autoimmune disease or a whole new problem if I get on getting glutened like this. I think maybe I should get out while I'm ahead of the game. I've got a long way to go and I need to be well! This isn't just paranoia, right?

But I'm gutted about leaving my work, which I love, my friends, my life and going off to make a new start. I think I'm going to try the south of Spain because its near home, the weather's better than England, they speak Spanish, but really I can hardly believe that my life is being turned upsidedown like this because of food. Added to this is the fact that I am not even diagnosed, because I'm scared that a gluten challenge would finish me off.

So I'm feeling angry, sad and aprehensive- gluten, why do you keep having to bring me fresh problems?

[Ahorsesoul]

Your health is well worth the move.

[txplowgirl]

I'm so sorry you are feeling bad but ask yourself which is more important to you. What do you want worse? Your health or your job? You can always find a new job, new friends but if your body lets go you could possibly lose your life.

I grew up with the same problems you did, i went gluten free without tests. I've never regretted it. If it came down to a choice my health would win out every time because I don't want to travel back down that road I came from. I wouldn't want to run the risk of developing something that I couldn't get rid of.

Good luck and i'm rooting for you. I hope you get to feeling better. Here's some (((((hugs))))) for you.

[cahill]

Your health is everything ,, with out it you have nothing

[love2travel]

It is a huge dilema and I feel for you. My husband and I have a house in Europe and will eventually live there. We love it so very much - the slower pace of life, beauty, intriguing culture, history, climate, etc. It is our dream to live in Europe rather than visit. So, I'll be facing some of the same challenges. Perhaps by then things will have improved!

It is so true that you need to be healthy. Let me also add that you must also LIVE life but of course without risking your health at the same time. Let me explain. I have a major back injury that is debilitating - very difficult to sit, stand for prolonged periods of time, and so on. However bad it is I refuse to allow it to prevent me from doing things I enjoy. But it is different from living in constant fear of causing serious internal problems in your future.

Yours is a tough decision and I totally understand where you are coming from. However, you do want to have a life to live. You are young and have lots of time to consider living elsewhere if you want, too. Some countries are better equipped, informed and more knowledgable than others. I still encourage you to pursue your dreams - just maybe somewhere more gluten-free friendly!

[ciavyn]

that is such a tough situation. I am also considering moving, for work. However, I'm in the opposite situation. Leaving where I have so much gluten free stuffs available is hard for me to fathom. However...you need to be healthy. Is there a way for you to work on making more people aware where you live? Do you have the time? Consider all your options, but you must do what you must. Best of luck.

[LivesIntheSun]

Hello, everyone,

First of all I have to ask the moderator to kindly UN-negative a1956chill's post- I was trying to give you a + and my hand slipped and there was no way to change it, sorry!!!

Thank you so much for taking the time to reply, I really appreciate it. I really needed to talk about the issue to people who also know what its like for this disease to limit your choices. You're right! I've got to do it, its just a big mental shift, really getting my head around what looking after myself properly implies (and less happily, what not looking after myself might imply). I'm a teacher and at was in the Christmas vacation that I really took the time to educate myself about the possible long-term consequences of not being strict with the diet, that was what really made me wake up and re-evaluate my location. Until then I had thought that getting glutened was an annoying and anti-social inconvenience, but not actually dangerous. In my case this was a big disadvantage of not being properly diagnosed- I have had to educate myself and its taken me a very long time to really add everything up. I'm getting there. Largely thanks to this fantastic forum.

Out of general interest, I got my genetic results back today- double DQ2.

[millifiori1000]

Good Friends, work you love, enjoyable social life? What difficult choices to make. I place these three above food any day (now). If you have not read "The Gluten Free Bible", I highly recommend it (I know another book about gluten). I really appreciate this women's spunk (Jax) and she helps me keep perspective when I have trouble keeping it. Sounds like you have made a wonderful life for yourself in Columbia - you probably will in Spain too.

I think that by leaving these things you are underestimating how valuable these things are in life.

I'm writing this because I'd like to share a difficult position I'm in and to see if anyone else has got through a similar situation or has any words for me.

I gave up gluten 4 years ago on the advice of a nutritionist. Before that I had been clinically depressed since childhood, I had canker sores constantly (negative biospy) and was so tired that my social life was nonexistant and I could only bring myself to do an undemanding job (sleeping before, after and during work). After giving up gluten I was able to come off all my meds, no longer depressed, no longer irritable, wide awake all day and able to work hard all day and go out at night, no canker sores unless glutened- you get the picture. A whole new life! However, I also suffer from SAD (seasonal affective disorder, I'm from England) and even being gluten-free couldn't shift that, so in order to complete my wellness I moved to Colombia, South America, two years ago (I had spent a lot of time here in the past and had work possibilities and friends here).

However, things have not been all rosy. The climate is fantastic, I have wonderful friends and a very enjoyable social life, my work life is blossoming BUT there is gluten in EVERYTHING. Food labelling is not a true representation of what is in the food. Awareness of celiac disease is zilch here, because manufacturers of a dazzling array of foods put flour in to bulk products out (powdered milk, soya milk, corn products, hot chocolate, instant coffee, vitamin tablets, packets of nuts are cross contaminated). I cook 99% of my own food from scratch, which is bloody hard, as I work more than full time, but I can't prepare absolutely everything I eat in my whole life from raw ingredients. I've stopped eating in restaurants after being glutened having been assured that an item didn't contain flour- either people can't be bothered to check or just want to make a sale. I'm getting glutened every week or two (if its mild then I feel exhausted and irrate, if its more serious then I get an ulcer in my throat and a big mental wobble, aching joints and narcolepsy-like symptoms for a few days).

So I am coming to the conclusion that I will have to uproot myself from my life in Colombia and live somewhere with proper food labelling. I'm 31 and I've come through hell to be where I am now, and I'm worried about developing another autoimmune disease or a whole new problem if I get on getting glutened like this. I think maybe I should get out while I'm ahead of the game. I've got a long way to go and I need to be well! This isn't just paranoia, right?

But I'm gutted about leaving my work, which I love, my friends, my life and going off to make a new start. I think I'm going to try the south of Spain because its near home, the weather's better than England, they speak Spanish, but really I can hardly believe that my life is being turned upsidedown like this because of food. Added to this is the fact that I am not even diagnosed, because I'm scared that a gluten challenge would finish me off.

So I'm feeling angry, sad and aprehensive- gluten, why do you keep having to bring me fresh problems?

[eatmeat4good]

If you love your life and really want to stay there, is there any way to have gluten free coffee, tea, flour etc. sent to you? Then you could just eat meat, fruit and vegetables that are naturally gluten free and you won't destroy your health.

Even if it is expensive, it would be worth it to keep your health and your job you love and your good friends. I would try this first before I decided to move.

But moving wouldn't be the end of the world. It would be just another wonderful experience. And you can always visit your friends, or have them come visit you.

Only you can make this decision, but I would exhaust all possibilities of having my food needs sent to me. The drawback is that if you decide to age there, you will be at the mercy of hospitals, or caregivers if you ever get to the point you need them and they probably won't be able to meet your gluten free needs. But that is true no matter where you are.

It sounds like a difficult choice, but if you have good access to fresh meat, fruit and vegetables, this diet is possible there. Just really difficult.

[GFinDC]

You could move to another country to avoid gluten but you may not be better off. Eating out is always a risk no matter where you live. Even restaraunts with gluten free menus can have bad days. If you insist on eating out rather than preparing your own food and taking it with you in a lunch box then you are creating your own problem. It is easily solved, but you have to make an effort. Take your food to work, don't eat out very often, and then only when you know it is a good gluten free place. And don't eat processed foods you know are unsafe. Change your ways, not your country.

[Waverlywoods]

if I were you you I would ask around for local support groups things like that, try to hookup with a person or people maybe you could cook for each other or something? I know when I make soup I have 20 qt pot and always freeze 10 to 13 Qt bags of soup. I know for me living alone was tough, if not impossible to manage the lifestyle I needed to heal. Fortunately, my situation has changed and it's been more valuable, I would say, than if there were a gluten free mall across the street.

[GlutenFreeManna]

Wow, what a tough choice to make. I'm the same age as you but I find myself in quite the opposite situation. I have good access to many gluten-free specialty items where I live but I am unemployed (mainly due to this illness), I have very few friends (fortunately I am married and my husband is my best friend and caretaker when I'm sick) and not much of a social life. There are many restaurants with gluten-free menus where I live but only two or three that I can safely eat at consisntently. I react to the smallest amount of gluten. So I don't eat out very much. Also, although there are many gluten-free packaged foods where I live, I have found I cannot trust some of them. I make most of my food from scratch just to be safe and healthy. This does require a lot of time in the kitchen and planning on my part to always have safe food with me when I leave the house. I can imagine it must be hard to always cook from scrath and work full time, but I know many on this board that manage it. Perhaps you just need to change what you are cooking and when you cook it? Many working people make big batches of food on the weekend and freeze in individual portions enough to last for the week. If you are still set on moving that's great but I think that your will have the same problems in another place. Even people with access to gluten-free packaged foods that are safe have to make lifestyle adjustments.

[LivesIntheSun]

Hello folks!

Its not a question of not being bothered to cook my own food- that's what I do 7 days a week, its not the end of the world. BUT sometimes I go away for more than one night (well, I haven't for a while, but I sure hope I will again), and sometimes, or often, something comes up that interferes with my planned routine and I get hungry whilst I'm out and about (also hypoglycaemic so got to keep a lid on this). Snacks are a real problem, mainly because I can't eat fruit (I suffered from irritable bladder and recurrent cystitis for a few years until I found out it was candida all along, thank goodness, but no fruit for me). Been glutened consistently from nuts. Its the not trusting anything at all out of a packet due to relaxed labelling laws, plus the Colombian habit of making up an answer if you don't know the answer, rather than admitting to not being sure ("of course this is made from pure corn and no wheat flour") thats doing me in. Anyway, as you are all pointing out, this is a hell of a disease and eating per se is pretty blooming compicated wherever, so I am aware that Spain wouldn't be some kind of panacea. I'm just desperately seeking a way for this glutening not to occur quite so regularly and more access to more varied food, I'm getting thin!

[LivesIntheSun]

I'll ask Mum to post me the Gluten-Free Bible- millifiori1000

Eatmeat4good, thanks. I'll be ok in a new place with time, I know, though things aren't easy on any path. I'm with you on the meat and veg diet, for my other health concerns (candida and hypoglycaemia) I'm discovering that its what suits me best anyway. But I seriously need some inspiration with snacks.....

[GlutenFreeManna]

Hello folks!

Its not a question of not being bothered to cook my own food- that's what I do 7 days a week, its not the end of the world. BUT sometimes I go away for more than one night (well, I haven't for a while, but I sure hope I will again), and sometimes, or often, something comes up that interferes with my planned routine and I get hungry whilst I'm out and about (also hypoglycaemic so got to keep a lid on this). Snacks are a real problem, mainly because I can't eat fruit (I suffered from irritable bladder and recurrent cystitis for a few years until I found out it was candida all along, thank goodness, but no fruit for me). Been glutened consistently from nuts. Its the not trusting anything at all out of a packet due to relaxed labelling laws, plus the Colombian habit of making up an answer if you don't know the answer, rather than admitting to not being sure ("of course this is made from pure corn and no wheat flour") thats doing me in. Anyway, as you are all pointing out, this is a hell of a disease and eating per se is pretty blooming compicated wherever, so I am aware that Spain wouldn't be some kind of panacea. I'm just desperately seeking a way for this glutening not to occur quite so regularly and more access to more varied food, I'm getting thin!

I can certainly understand your dilemma and I don't mean to come across as criticizing your decision to move. you gotta do what you gotta do for your health. If I were in your situation (and could not move) I would look for ways to make more portable snacks at home. I would look into dehydrating vegetable chips and making my own beef jerky or summer sausage in the oven. What about home-popped popcorn? Can you buy bulk popcorn kernals there? Oven roasted garbanzo beans (AKA chick peas) make a nice snack too. Do you have access to ANY gluten-free flours at all? Making gluten-free crakers is pretty easy if you can get any flour. I also have hypoglygemia and can not be without food for several hours so I can really understand where you are coming from. I carry a small cooler that looks like a purse with me practically everywhere. Even if I am not going to be out for very long I still try to take it. I have had times when I didn't take food because I was not planning on being gone long and my car broke down or I had another delay. Having safe food with you needs to be a priority and if you can't do that where you are living then you do need to move. Good luck to you!

[iamsarar]

Don't know if this would work for you but what about online food ordering. Spend some extra money and order some of those quick staples. Crackers, soup, breads, cookie. Stock up. It might be worth it.

[butterfl8]

You write that "Gluten is dictating my life choices." I felt the same was until a few nights ago when my husband brought up a good point. You have the choice to stay in Columbia and continue your life exactly as you have been. Or you have the choice to take precautions and cook your own food, and continue to live where you are. Or you have the choice to move to Spain. Or you have the choice to move anywhere else. You can make any choice.

GLUTEN IS NOT MAKING THESE CHOICES. GLUTEN IS NOT IN CONTROL. YOU ARE.

You have the power to make choices for yourself. You can be in charge of your health in regards to gluten, to sunshine (yea!), jobs, friends, and anything else.

Your post caught my eye because I was feeling sorry for myself about not being able to do fieldwork in India. My husband pointed out that I could still do fieldwork, I had a choice. I admitted that doing so was a choice, but not one in my best interests.

I hope this helps.

You are in control!!

-Daisy

[Roda]

I know this doesn't help the moving situation, but you mentioned you have seasonal affect disorder. Have you had you vitamin D level checked? I ask because my husband, while not diagnosed with SAD, always would get into a funk in the wintertime. Two years ago I put him on vitamin D and I noticed a significant improvement in his moods during these last two winters. It also has had some other positive effects for him. You should get all your vitamin and mineral levels checked. If you are getting glutened that often you could still be not absorbing them well. Good luck on your decision.

[gabby]

I moved to Croatia for my health, and am in the process of trying to build my own farm. I am Canadian and don't speak Croatian (yet). In addition to celiac, I have some other not-too-pleasant health issues. In Toronto I was walking with a cane at one point, and in Croatia I was able to climb stairs. Why? Don't know. Never figured it out. But I'm here, walking around, climbing stairs, etc. But it isn't easy. And not a magic bullet either. On a scale of 1-10 (10being the best), I was able to operate at a 2 in Canada, and in Croatia I'm at a 6 most days. I keep a journal online, if you're interested in reading just google ZagrebDiaries.

As for being gluten-free over here...I have to cook everything I eat from scratch because of a myriad of food and chemical sensitivities I have. I did try to eat at carefully chosen restaurants early on, but I kept getting glutened from things like: gluteny spoons being used to stir my food, gluteny towels used to wipe the edge of my plate, bread being grilled next to my fish, bread being sliced on a shelf above where my food is being prepared, pizza being eaten by the person shelling my walnuts etc, etc, etc. After about 18 months, I just gave up on eating out. My experience with restaurants has been the same in various other restaurants in Italy, the UK, Germany, Austria, Switzerland. I'm a super sensitive celiac though..so even a smidge is enough to send me over the edge. Also note that lots of people/cooks/chefs think that gluten-free means wheat-free, and will try to serve barley soup with rye bread as a gluten-free meal!

If you can tolerate gluten-free processed foods (I can't) like cookies, crackers, soups, nut butters, etc, then there are a host of organic/health food stores (organic is known as 'Bio' in most parts of Europe) that carry gluten-free items. Lots of gluten-free items come from Austria and are shipped all over Europe.

Spain ought to be nice for you as there are lots of British expats there, in addition to sunshine, warm weather, lots of fresh foods, and a relaxed pace of life. And it is just a 2 hour flight to the UK when you get homesick!

Hope this helps!

[love2travel]

I moved to Croatia for my health, and am in the process of trying to build my own farm. I am Canadian and don't speak Croatian (yet). In addition to celiac, I have some other not-too-pleasant health issues. In Toronto I was walking with a cane at one point, and in Croatia I was able to climb stairs. Why? Don't know. Never figured it out. But I'm here, walking around, climbing stairs, etc. But it isn't easy. And not a magic bullet either. On a scale of 1-10 (10being the best), I was able to operate at a 2 in Canada, and in Croatia I'm at a 6 most days. I keep a journal online, if you're interested in reading just google ZagrebDiaries.

As for being gluten-free over here...I have to cook everything I eat from scratch because of a myriad of food and chemical sensitivities I have. I did try to eat at carefully chosen restaurants early on, but I kept getting glutened from things like: gluteny spoons being used to stir my food, gluteny towels used to wipe the edge of my plate, bread being grilled next to my fish, bread being sliced on a shelf above where my food is being prepared, pizza being eaten by the person shelling my walnuts etc, etc, etc. After about 18 months, I just gave up on eating out. My experience with restaurants has been the same in various other restaurants in Italy, the UK, Germany, Austria, Switzerland. I'm a super sensitive celiac though..so even a smidge is enough to send me over the edge. Also note that lots of people/cooks/chefs think that gluten-free means wheat-free, and will try to serve barley soup with rye bread as a gluten-free meal!

If you can tolerate gluten-free processed foods (I can't) like cookies, crackers, soups, nut butters, etc, then there are a host of organic/health food stores (organic is known as 'Bio' in most parts of Europe) that carry gluten-free items. Lots of gluten-free items come from Austria and are shipped all over Europe.

Spain ought to be nice for you as there are lots of British expats there, in addition to sunshine, warm weather, lots of fresh foods, and a relaxed pace of life. And it is just a 2 hour flight to the UK when you get homesick!

Hope this helps!

Wow - living in Croatia? That is where my husband and I are moving to from Alberta! I have not yet checked out your blog but gather by the name you are in Zagreb. Our house is in rural Istria, surrounded by fruit and nut trees and lots of figs, foraging for mushrooms/wild herbs/fennel and wild asparagus in our stone walls. We LOVE Croatia for so many reasons. Too many to list here!

How would living gluten-free in Croatia compare with Canada? We're spending May in Croatia and I am bringing restaurant cards but unsure if they will be sufficient. I may make up my own to explain the gluten thing versus wheat thing, not to mention cross contamination.

I can tolerate pretty much anything, including gluten - I am asymptomatic which is scary for obvious reasons, but I never did buy my own processed stuff including cookies and such.

Can you recommend any gluten-free friendly restaurants in Zagreb?

[gabby]

Hi,

how cool that you are moving to Croatia....when??? Your house in Istria sounds lovely. You'll have to let me know what part of Istria you are in (we're looking for land in Istria..sort of between Tinjan and Brtonigla).

As for places where you can possibly get a gluten-free meal in Zagreb...I'm not sure. I've found that places where they cook things on an open grill can sometimes be accomodating. My husband speaks Croatian, so I've had him explain everything to the chef, and even go into the kitchen to see if my food is being prepared separately. We only attempted this if it was not busy. If the place is busy, then forget it because the kitchen will be a whirlwind of activity.

How's your Croatian? If it is fluent, you might just be able to get by with lots of explanation. Again, lots of people think that celiac means you can't eat bread. So they'll serve a dish and say it is gluten-free...but they mean 'bread-free' and it'll have some flour mixed in the sauce, or the meat will be breaded, or it'll come served over gnocchi (made with potato AND flour). I used to tell people to prepare my food NAKED. NUDE. With nothing. Except olive oil and salt.

I won't risk it anymore...but again, I'm supercalifragilistically sensitive.

Um, if you are not living in your Istrian home in August...I'd be more than happy to take care of any figs that need picking (and/or hazelnuts).

If you'd like to meet for a coffee either in Zagreb or in Istria when you are here, PM me (or leave a comment on my blog and I'll contact you).

Vidimo se,

bok bok

[LivesIntheSun]

Super-interesting replies everyone. It is very interesting for me to hear about experiences and ideas, thank you!

Butterfl8, you're right. And I suppose the biggest blessing is knowing what was wrong with me and having the information to make the choice. Things were a hundred times more difficult before I knew what was going on with my body, even though I ate whatever I fancied. At that time I didn't have any idea how to make myself feel better. However, as I process the seriousness of my situation, I am swinging between anger (at the doctors I trusted with my health who let me deteriorate for years- if I hadn't done so much research and investigation myself I dread to think how ill I'd be now. But I'm furious about all the 'lost years'), joy that I found out what was happening in the end, I do truely feel blessed, and freaking out about making a fresh start. The whole topic has me on an emotional rollercoaster. I'm trying to see things from lots of different angles. Overall, I love my life and I'm going to work to make it great. But the getting-there part is scary nonetheless, mainly leaving what I have and going into the unknown.

Roda, I'm fascinated by the vitamin D connection and I'm going to follow it up. If that was the missing link, then who knows, maybe I could even survive in my homeland one day

Gabby, I'm very glad Croatia is working out better for you than Canada. Thank goodness you found it!

[FooGirlsMom]

Hi there,

I feel for you. As I was reading I couldn't help thinking of those people in the US, back in 19th & early 20th centuries who had TB and would move to the desert climates to improve their symptoms. They did so without modern technology to keep in touch with loved ones.

You mentioned in one of your later posts that you have a Candida issue. You know, one of the ways you can limit your gluten exposure is to eat a low carb/Atkins type of diet with whole foods. I controlled my symptoms for years (without realizing it) that way. I pretty much ate protein & veggies for the better part of 12 years. The only issue with this is that in resturants they sometimes season meats with gluten rubs/seasonings. I would think that for a hypoglycemic who is gluten sensitive you'd need to locate & keep on hand a gluten-free shake mix. I took them everywhere with me. I only had to add water. Nuts usually bothered me too because of cross-contamination (I used to think it was the carbs). There are lower carb fruits you might be ok with. Strawberries, blueberries, raspberries etc. Don't know if you've tried those or if symptoms flare from them.

If you go meat/veggie, the absolute necessity is to find a gluten-free salad dressing you like and keep it with you all the time. Then you can usually order a meat salad with no seasonings.

I just wanted to say I feel for you. I know it's a hard decision to make. It would seem that you decision to leave or stay is dependent on how much income you have to spend on shipping safe products to yourself from other places in the world - like perhaps the U.S.

Take Care,

FooGirlsMom

[LivesIntheSun]

Thanks for your kind words Foogirlsmom. So are you generally Paleo now then? I'd be really interested to know what brand of shake you buy.

I've been "off the map" for the last week after another glutening- switched off phone, unplugged computer, just tried to wait it out, I can't trust myself not to do or say stupid things when I'm like that.

[sb2178]

Ugh, awful choice. I would try to see what you can get shipped in before moving. Shipping is wicked expensive, but for packaged ICE snacks, nuts, and maybe even dry mixes, well worth it. The occasional emergency prepared meal in the vacuum packing might be nice too if that's something you like/can get. Might be worth it if your living expenses are lower there too.

Not eating out is rough, but can you just drink or make really good friends with a restuarant manager? Sometimes consistent patronship can get you what you need.