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Gluten Making Me Uproot Myself


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#1 LivesIntheSun

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Posted 12 March 2011 - 10:52 PM

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? :(
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#2 Ahorsesoul

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Posted 13 March 2011 - 09:55 AM

Your health is well worth the move.
  • 1
1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#3 txplowgirl

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Posted 13 March 2011 - 10:32 AM

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.
  • 1

Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#4 a1956chill

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Posted 13 March 2011 - 10:43 AM

Your health is everything ,, with out it you have nothing
  • 2

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#5 love2travel

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Posted 13 March 2011 - 01:01 PM

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!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#6 ciavyn

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Posted 13 March 2011 - 01:14 PM

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.
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Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#7 LivesIntheSun

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Posted 14 March 2011 - 04:55 PM

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.
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#8 millifiori1000

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Posted 14 March 2011 - 06:22 PM

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? :(


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#9 eatmeat4good

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Posted 14 March 2011 - 10:43 PM

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.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#10 GFinDC

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Posted 15 March 2011 - 12:13 PM

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.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 Waverlywoods

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Posted 15 March 2011 - 01:18 PM

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.
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#12 GlutenFreeManna

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Posted 15 March 2011 - 02:02 PM

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.
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#13 LivesIntheSun

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Posted 15 March 2011 - 03:56 PM

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!
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#14 LivesIntheSun

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Posted 15 March 2011 - 04:03 PM

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.....
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#15 GlutenFreeManna

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Posted 15 March 2011 - 04:39 PM

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!
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)


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