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  #21  
Old 01-26-2010
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Well I feel for you, wheat makes up a huge part of my diet and I have trouble even imagining how I would eat without it.
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  #22  
Old 03-02-2010
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Not Celiac, I was tested for it when I was a baby, seems it was well known here in Oz back in the 70's. It took years for the doctors to figure out why I always was sick.

What wasn't well know back then was food allergies and intolerance's (I luckily only have the intolerance's).

Wheat is no problem for me, but I don't eat a lot of it either, as I stick to a predominantly asian diet (Chinese wife).

Oats, Peanuts, Citric acid (particularly orange and mandarin, not so much lime and lemon), soy, and dairy (especially cheese and yogurt) are my no go foods, there are others but these are the most common.

Things are better these days with better labelling, but you always have to read the ingredients labels and ignore the front of the pack. Eliminate all the cereal boxes with oats or peanuts and the list left is very small.

Sticking with the asian diet, I only really have to watch for peanuts, the small amounts of soy sauce I can tolerate, and tofu doesn't seem to bother me, but soy milk is a no no (my reaction to it is weird, skin goes a grey colour and I get very lethargic)

One thing I found when I lived in SE Asian countries was how little processed food or imported food is used, you may find the same in other third world countries, so if wheat is not grown locally then you may find the entire food supply is GF. As a personal example I can eat basically all indian food except the mild dishes where yogurt is used to tame the spices, luckily I like my food spicy , you will need to check but I thing you will find that apart from Naan bread all indian food may be GF?

I guess do some research on where you are going and what the local diet is, what foods are safe and what are not. It's far easier to find safe foods in the locals diets then trying to stick to a western GF diet. As an added benefit you may find some dishes you really enjoy and can bring back with you.

One last thing, when I was 17 I got Chronic fatigue syndrome, as a side effect of having german measles, chicken pox (for the second time) and glandular fever all in the same 3 week period. Basically my immune system crashed and couldn't recover, it took 9 months of visiting doctors and tests several times a week until a doctor finally told be the good and bad news, he said good news is I know what's wrong you have CFS, bad news is we don't know how to treat it, all we know is typically for an adult it takes 5-7 years to recover (not really what you want to hear in your last year of high school) so with no proposed solution, a friend did some research into CFS and proposed a new diet. It went like this: Spirulina (I chose tablet form as I didn't like the powdered version) was my only source for all vitamins and minerals number of tablets was calculated based on RDI for all vitamins and minerals, then as a supplement to this plain steamed rice for fibre and carbohydrate and filtered water only for drinking, that was my entire diet for 12 months, the benefit of this diet was immediate, I felt well and was back at school within 2 weeks of starting this diet. After 12 months I kept the diet going and gradually added "safe" foods (things I didn't previously have intolerance's to) slowly one at a time (I believe this is now called the challenge and test method).

So you could check if Spirulina is GF I suspect it is, it is a breed of algae, dried. If so Spirulina and Rice both store well, stock up on both. You won't love this diet, but you won't starve either.

Hope my experience helps you.

Dave.
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  #23  
Old 03-02-2010
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"you will need to check but I thing you will find that apart from Naan bread all indian food may be GF?" Can't make any blanket assumptions in the US because even many "ethnic" foods are adding wheat flour to places it doesn't belong (like tacos) in an attempt to mainstream them.

And worse, most flour mills do not really clean up between different lots of grains, so a small mill that has just ground corn flour might next grind bean flour or wheat flour, with enough cross-contamination to cause problems for anyone gluten "intolerant".

Oats are also problematic, because almost all oats are cross-contaminated with wheat. Apparently farmers rotate oat and wheat crops on the same land so there's always almost some of one growing in the other, and that's enough to cause problems. Dedicated "oats only" farms exist--but on a very small scale.

Since celiac is more like radiation posioning (that is, cumulative damage leading to eventual permanent damage) than a conventional allergic "shock" reaction, it is better to try really hard to avoid any gluten exposure at all.

I'd be surprised if celiac, as it is now understood, was well known in Oz in the 70's. In the US it was considered to be a childhood disease that usually went away after infancy, and that was "well known" in the 50's and still considered fact until the late 90's. It has only been in the last ten years that any real understanding has been spread around in the US, and even now there are perhaps three experts who have more than a five-year track record specializing in it. With "the facts" again changing every once in a while, because research has been nearly a zero priority, globally. And, frankly, some disdain form the medical community because so many "I think wheat is bad for my baby" yuppy types cloud the picture with what may be more of a fad than a medical problem. (But I thank them for being crazy enough to make gluten-free foods more available for those of us who really do have a medical problem with gluten.)

If you were tested for celiac when you were a baby, I'd be surprised if the tests were the same as what is available today. Endoscopic biopsy could show the same damages, but I don't think the blood tests have been available for 20 years, if that long. You might want to find out exactly what tests were done, this has been a rapidly changing area.
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Old 03-03-2010
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Quote:
Originally Posted by hellosailor View Post
Can't make any blanket assumptions in the US because even many "ethnic" foods are adding wheat flour to places it doesn't belong (like tacos) in an attempt to mainstream them.
One of the great things about Oz, is the apart from the traditionally westernised chinese food, ethnic food here is basically authentic. (small exceptions where ingredients aren't available for legal reasons)

Quote:
I'd be surprised if celiac, as it is now understood, was well known in Oz in the 70's. In the US it was considered to be a childhood disease that usually went away after infancy, and that was "well known" in the 50's and still considered fact until the late 90's.
That sounds like what my mum described, the only difference it that here they say most people grow out of it by the time they are teenagers, in other words it's possible but rare to still have the condition as an adult, they have changed their tune now here too.

Funny they also said I would grow out of my allergies, I now know that what they diagnosed as allergies are actually food intolerances, which over time you can build a resistance to which is different to allergies which can be fatal. I had almost built a resistance to my intolerances (grow out of as such) when I got CFS, which basically reset everything back to the beginning.

Most importantly know what does damage or makes you sick and avoid it, sounds like you have that down. Eat lots of fresh fruit, try them all even the ones you've never seen before, some of my favourites in no order are tomatoes, banana, jack fruit, durian, dragon fruit, papaya, guava (green not pink), honeydew & rock melon.

A nice simple (traditional chinese) dish is, throw a couple of roughly chopped tomatoes, a roughly chopped spring onion and some eggs in a pan and cook till the egg is like scrambled egg and the tomatoes are soft, then server with steamed rice. Simple to cook, yummy, you can skip the spring onion if you can't get them, the rest of the ingredients should be available everywhere. you can add other flavours as you like, salt peper, soy/oyster/fish/tomato/chilli sauce, green veggies (bok choy, broccoli, spinach, etc). Iv'e had many variations of this recipe from different chinese families. basically it's a simple cheap meal that tastes good and is flexible depending on whats available.

Good luck,

Dave.
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  #25  
Old 03-03-2010
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This thread has skirted around the fact that there are two forms of gluten intolerance. Some people are wildly sensitive to gluten, while others are merely intolerant. Those who have the "pure" form of intolerance often become zealots in preaching about total abstinence from gluten. Most people with gluten sensitivity are just that - sensitive. It is worth making sure which group one falls into while reorganizing one's life.

Bragg's Amino Acids is a soy sauce like liquid which our family has grown to enjoy both as a substitute for soy sauce and also as a sodium free substitute for salt. Difficult to find, but worth stocking up on if you find it.

"Allergies" are also sometimes misunderstood. There are two parts to an allergic reaction. The first is the stimulus, the second is the bodies reaction to the stimulus. While there are some allergans which stimulate an immediate massive, sometimes life threatening response, it is more common for people to be sensitive to multiple allergans. In that situation, a patient will react to an allergan if there are lots of other stimuli present also, but will not react if that is the only stimulus present. Makes figuring out the sensitivites harder. The importance of this information is that if one is having trouble, it is smart to avoid ALL possible sources of problem so that the total load of allergans goes down.

Hope this helps
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  #26  
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Quote:
Originally Posted by dongreerps View Post
This thread has skirted around the fact that there are two forms of gluten intolerance. Some people are wildly sensitive to gluten, while others are merely intolerant. Those who have the "pure" form of intolerance often become zealots in preaching about total abstinence from gluten. Most people with gluten sensitivity are just that - sensitive. It is worth making sure which group one falls into while reorganizing one's life.

Bragg's Amino Acids is a soy sauce like liquid which our family has grown to enjoy both as a substitute for soy sauce and also as a sodium free substitute for salt. Difficult to find, but worth stocking up on if you find it.

"Allergies" are also sometimes misunderstood. There are two parts to an allergic reaction. The first is the stimulus, the second is the bodies reaction to the stimulus. While there are some allergans which stimulate an immediate massive, sometimes life threatening response, it is more common for people to be sensitive to multiple allergans. In that situation, a patient will react to an allergan if there are lots of other stimuli present also, but will not react if that is the only stimulus present. Makes figuring out the sensitivites harder. The importance of this information is that if one is having trouble, it is smart to avoid ALL possible sources of problem so that the total load of allergans goes down.

Hope this helps
That was really interesting.

I'm curious, as someone who doesn't have allergies I have always wondered if lots of exposure to allergens would cause someone to build up a resistance to them. Example, if someone gets allergies when there is a lot of pollen in the air, can they just start spending a lot of time around pollen and eventually get over it ? The reason I ask is that I have heard/read that people often get allergies as children if they are kept in overly clean environments, are not allowed to play outside and get dirty when they are young, etc.
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  #27  
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My husband didn't realize what his problem was until a few years ago. Bread seemed to be one thing that he could eat when most other things bothered him. Eating raw vegetables, garlic, and spaghetti to name a few things would leave him with severe abdominal pain for 8-12 hours. With Celiacs, the cilia that help break down foods are damaged or destroyed, which is why he had major trouble digesting things like raw veggies.

He is now so sensitive to gluten that any amount will make him sick as a dog sometimes for days. Even to the point that french fries fried in the same grease as chicken mcnuggets will make him sick. There are many more foods that he can eat now, as long as they don't contain gluten.

I do believe with regular allergies that you can build up your immune system to them and they will become less of a problem over time.
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  #28  
Old 03-03-2010
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" That sounds like what my mum described, the only difference it that here they say most people grow out of it by the time they are teenagers, in other words it's possible but rare to still have the condition as an adult, "
Dave-
That would have been the old knowledge that was given to your mom's generation. It is now known that celiacs often go into a sort of remission after infancy, but the disease often flares back up in middle ages (the 40s) in the presence of some stressors that are still undetermined. Plain old fashioned STRESS seems to be a major one, triggering chemical changes in the body that in turn are linked into celiac. But then again...that's all part of "new knowledge" in the last 20 years that there are in fact not just two nervous systems in the body, but three. The serotonin uptake/cycle that plays a major role in depression and other problems is regulated by the gut. The full extent of the chemistry and the interactions, still very much unknown. But, the current thinking is that given the amount of damage that celiac can cause when it triggers autoimmune diseases (including gut cancers and arthritis), if someone has been diagnosed as celiac they should avoid gluten for life--regardless of how much discomfort they may not have during all those years in "remission".
My friends daughter (21?) refuses to get tested and just thinks chronic stomache aches and occasional diarrhea are something she can deal with--despite her mom's urging that since it is genetic and mom has it, she needs to look at this. Nope, she doesn't want to give up pizza and beer, won't hear of it.
But again...until the blood protein tests came onto the market, there was no simple way to make the diagnosis short of endoscopic biopsy, which is somewhat of a big deal since anesthesia is required and complications do happen. And most docs (including those leading ones) will still 'require' the biopsy if the tests indicate celiac, again discouraging a lot of folks from going down that road.

Don-
You're right about there being a lot of confusion over allergy vs intollerance vs sensitivity. Rather than debate jargon among fields, I'd say "problem" or "reaction" and leave the experts to hurl jargon at each other. In the US our FDA has required allergen labelling for major allergens on foods now, but has continued to debate "gluten" for nearly a decade, because no one can agree on how much gluten can be present in a food before it is significant enough to require it to be labelled, or how much gluten a food can contain whiloe being labelled "gluten-free". Arguing over threshold levels for a decade, and meanwhile, leaving no standards at all.

Wind Magic-
You can be desensitized to SOME allergens, sometimes. But with others, it is like saying "Well, if I get a gradual sun tan, that will prevent sun burn, right?" yes, it will, but you'll still get melanoma from too much exposure. You can't prevent some types of damage just because you build up some kind of tolerance. When you're dealing iwth the immune system, a lot of how it works simply is not known, so there are no firm answers.

Soontobe-
That's not cilia, it is intestinal villi that are destroyed by the celiac reaction. And then literally the lining of the intestine sloughs off, resulting in the inability to digest dairy products AND malabsorption of many nutrients. If your husband couldn't tolerate some veggies, that was because the raw intestine no longer tolerates roughage of any kind. No fiber, it blows right out because the damaged intestinal lining can't deal with it.
The fries and McNuggets are a real problem, cross-contamination in fryer oil, or even on grilltops (if someone made a grilled cheese on the diner grill, the grill is now contaminated from the bread) and actually McDonalds is a place that celiacs need to pass by. As a corporation they refuse to do gluten labelling, when other fast food chains do. IIRC Wendy's and BurgerKing use dedicated fryers for their fries--for flavor, but they are aware of this issue as well.
It isn't a question of building up your immune system with celiac, but trying to convince your immune system not to attack your own body. Much like trying to convince troops not to kill each other with friendly fire. There are some experimental "vaccine" programs going on, but nothing beyond the early stages except some quackery from a couple of herbal remedy sellers.
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  #29  
Old 02-19-2013
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Re: Gluten Free and Cruising

Aloha Cruisers,

I discovered through a very painful extended experience I will spare you the full details of. Basically consisted of 30-40 trips (UN-exaggerated, really) to the head for more then 2 weeks straight, with severe abdominal pain and other odd symptoms, I thought it was just food poisoning.. After talking with my mom, thank the powers that be for mothers, I learned my aunt was diagnosed with celiac recently, so I went into the dr with a new perspective. Sure enough, not just intolerant to gluten, down right aggressively hostel to itself when exposed to gluten proteins...

Since that day 5yrs ago? 35 now, there have been some very serious lifestyle changes. Because with celiac, as mentioned, its "complicated". Food whenever being prepared by others is suspect, everywhere. I know there are places like wholefoods, local natural food stores, etc. that prepare foods specifically gluten free, but these are not as previlant even in the states outside of larger population areas. And restaurants that specialize or at least have someone aware enough to destinguish a gluten free selection on there menu.

However I have learned through these years, that while most of the time the best intentions are in place, not all gluten free selections are truly gluten free, its getting better but still not optimal. Though, I have had much better results in eating at a decent friendly family run restaurant, or anywhere that the cook/chef knows and cares about the food they make. You can always aquire a gluten free meal, it takes a bit more intimacy with the people that prepare and serve your food, and depending on your communication skills and selection process cross contaimination can still be a problem in some instances. However I have had mostly good experiences with developing this dynamic, to the point that often if I choose something off the menu when calling in an order I think is gluten free but in fact is not, they ask if it is for me or another and offer a gluten free version if needed...

Per supplies/provisions. rice/corn/quinoa/oats*/tapioca/cocoanut can all be attained oats is definitely the difficult cross-contamination one but imagine one can stock up when available on that one a bit.. there is a pretty decent recipe here for gluten free multi-purpose, one could either keep the supplies for mixing it up on hand in qty, or I premix and keep some of the unmixed flours around for other stuff too, but concerned about some of the long term storage options for the pre-milled flours out on longer runs.. any thoughts on that?

hrmm.. cant post links yet. gimme a pm if you want it.

happy sails,
slax
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  #30  
Old 02-19-2013
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Re: Gluten Free and Cruising

Slax, I would expect that putting "oxygen absorbers" in the flours and hermeticaly sealing them would extend their life quite a bit. These little cans/packets look like traditional moisture absorbers, but once they are opened they actually bind the oxygen in the package, leaving only inert nitrogen, so there's no oxidation spoilage. Not cheap but really quite clever, from online canning and other suppliers.
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