I think I know how to post now, so here I go...
First, THANK YOU all so much, I'm very grateful to have found you!
Basic background on my situation: diagnosed a year ago with MC and early stage celiac via local GI doc's tests and biopsies and Dr. Fine's gluten sensitivity and gene panel testing. Have followed a GF diet and used 1- or 1/2 tablet Immodium nightly for D and have done well until recent flare ups of D. Have not been able to use Immodium during day as it is too sedating, so have used Pepto Bismol and BRATTY diet (bananas, rice, applesauce, tea, GF white toast, yogurt), Immodium at night and have gotten D settled down (since Enterolab anti-casein IgA test result was in normal range, I have not eliminated dairy). However, as I made an attempt to get back to a "normal" diet and introduced salad, I was right back to D. My normal diet is/was lots of salads, vegetables, fruits, GF grains, poultry, fish, yogurt and low fat dairy products and a big latte coffee (half low fat milk) in the morning. I admit I do eat ice cream a few times a week and am wondering if it being high fat is creating problems for me. I am slim and do not want to lose more weight, so feel "entitled" to eat ice cream, hmmm?
I am leaving in 10 days for a long awaited trip to Alaska (land-based, not a cruise) and am worried about the 14 hour plane trip to and from home, being out on hikes, not being able to get just a BRATTY diet and having hoped to eat fairly normally. I have requested a GF diet with the tour group. I am thinking of undertaking Dr. Fine's treatment for MC of 8 Pepto Bismol tablets/day for 8 weeks immediately, but don't know how I should start that.... space the tablets over each day, I imagine? I don't see any reason not to do this, right?
I am eager to heal my MC as much as I can, not just treat the symptoms as I previously was doing. I am grateful for this group's positive, can-do outlook. I know it's not going to be a quick process. Perhaps more tests re: food sensitivities are needed and I can do that. My most immediate concern, however, is how to have a good trip after years of looking forward to going to Alaska.
Thanks in advance, Charlotte
Newbie needing help , leaving on 18 day trip
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi there Charlotte
Is gluten your only trigger? can you tolerate fruit or salad? My experience with travelling is that a gluten free meal is mostly Salad and fruit based. (which didnt suit me) and the concept of multiple intolerances was too much for airline catering, restaurants and other people that have not had contact with multiple intolerances
during my trip, for the flights and airport transit i was only having rice cakes and apple juice (as i can not tolerate fruit).
there was nothing suitable for me to eat at the airports. I did carry my own foods on the plane.
when in France I struggled to find appropriate ingredients and meals while on the trip and did spend days living on rice cakes and apple juice.
I have been home 3 weeks and it has taken me that long to feel 'good again'
be prepared that with adrenalin etc you will survive the trip but when you get home your body may react the the drastic change of being off your bratty diet and having an increase of meds.
good luck with the planning- the trip sounds fantastic
Is gluten your only trigger? can you tolerate fruit or salad? My experience with travelling is that a gluten free meal is mostly Salad and fruit based. (which didnt suit me) and the concept of multiple intolerances was too much for airline catering, restaurants and other people that have not had contact with multiple intolerances
during my trip, for the flights and airport transit i was only having rice cakes and apple juice (as i can not tolerate fruit).
there was nothing suitable for me to eat at the airports. I did carry my own foods on the plane.
when in France I struggled to find appropriate ingredients and meals while on the trip and did spend days living on rice cakes and apple juice.
I have been home 3 weeks and it has taken me that long to feel 'good again'
be prepared that with adrenalin etc you will survive the trip but when you get home your body may react the the drastic change of being off your bratty diet and having an increase of meds.
good luck with the planning- the trip sounds fantastic
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Suggestions appreciated!
Thanks, Joe and thanks Gabes. It is a good reminder that multiple intolerances are just too complicated to expect anyone but myself to figure out and GF can often mean I get salad... not good for me. I will be traveling with lots of rice cakes! I'll experiment with juices and nuts, trying to get some protein and appreciate that I have to do trial and error myself. The support and wealth of information of this community is really terrific. Appreciatively, Charlotte
Hi Charlotte,
Welcome to our internet family. I hope your trip goes as smoothly as possible.
About half of us are sensitive to soy, so unless you tested negative to soy at Enterolab, you might try cutting all traces of soy out of your diet, to see if that is the missing link. Usually, for someone who has been on a GF diet for a year or more, there will be a very fast response to removing soy from the diet, (typically within a day or two), if soy is the only remaining problem.
Also, remember that as long as you have enteritis, (inflamed intestines), you will be lactose intolerant, due to a suppression of your body's ability to produce sufficient amounts of the lactase enzyme, (which is required to digest lactose). This has nothing to do with casein intolerance, but it can cause you to have gas, bloating, and diarrhea, from diary products, even though you might not be casein intolerant. After the enteritis ends, your lactase production will resume, and you will no longer be lactose intolerant.
The Pepto-Bismol treatment is effective, (especially in conjunction with the diet), but some of us have found that we cannot tolerate the treatment, due to neurological side effects. Because of the risk of an adverse reaction, Dr. Fine no longer recommends it as a primary treatment, (of course, that doesn't mean that you can't use it). For those who can tolerate it, the Pepto treatment seems to be effective in bringing remission in approximately 85 % of cases, of my memory is correct. Be aware that it will turn your stool coal black.
Most of us have to avoid most high-fiber fruits and vegetables, (most of the fiber is in the peel, so if you eat any, remove the peel first, and over-cook them). Lettuce is the worst - lettuce would always practically turn me inside out. It was so bad that I never went back to eating it, even after I was in remission.
If you are already reacting, then eating ice cream may be a problem, (in addition to the lactose problem that I mentioned above), because it contains a lot of fat. Fat is poorly absorbed during a reaction, and the result will be that it will pass through your small intestine unabsorbed, until it gets to the lower third of the small intestine, and the colon, where bacteria will try to digest it, and certain chemicals will be produced as by-products, which can convert osmotic diarrhea, into secretory diarrhea, (which is a very high-volume type of diarrhea, characteristic of MC). Otherwise, as long as you are not reacting, there is nothing wrong with eating ice cream, since you are not casein intolerant.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I hope your trip goes as smoothly as possible.
About half of us are sensitive to soy, so unless you tested negative to soy at Enterolab, you might try cutting all traces of soy out of your diet, to see if that is the missing link. Usually, for someone who has been on a GF diet for a year or more, there will be a very fast response to removing soy from the diet, (typically within a day or two), if soy is the only remaining problem.
Also, remember that as long as you have enteritis, (inflamed intestines), you will be lactose intolerant, due to a suppression of your body's ability to produce sufficient amounts of the lactase enzyme, (which is required to digest lactose). This has nothing to do with casein intolerance, but it can cause you to have gas, bloating, and diarrhea, from diary products, even though you might not be casein intolerant. After the enteritis ends, your lactase production will resume, and you will no longer be lactose intolerant.
The Pepto-Bismol treatment is effective, (especially in conjunction with the diet), but some of us have found that we cannot tolerate the treatment, due to neurological side effects. Because of the risk of an adverse reaction, Dr. Fine no longer recommends it as a primary treatment, (of course, that doesn't mean that you can't use it). For those who can tolerate it, the Pepto treatment seems to be effective in bringing remission in approximately 85 % of cases, of my memory is correct. Be aware that it will turn your stool coal black.
Most of us have to avoid most high-fiber fruits and vegetables, (most of the fiber is in the peel, so if you eat any, remove the peel first, and over-cook them). Lettuce is the worst - lettuce would always practically turn me inside out. It was so bad that I never went back to eating it, even after I was in remission.
If you are already reacting, then eating ice cream may be a problem, (in addition to the lactose problem that I mentioned above), because it contains a lot of fat. Fat is poorly absorbed during a reaction, and the result will be that it will pass through your small intestine unabsorbed, until it gets to the lower third of the small intestine, and the colon, where bacteria will try to digest it, and certain chemicals will be produced as by-products, which can convert osmotic diarrhea, into secretory diarrhea, (which is a very high-volume type of diarrhea, characteristic of MC). Otherwise, as long as you are not reacting, there is nothing wrong with eating ice cream, since you are not casein intolerant.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Charlotte
re protein - one thing i have found here in Australia, is a vege protein powder that is not soy based (you buy it as a loose powder in health food shop). I have been adding it to rice milk and having it with my GF/SF cereal to ensure i am getting enough protein (as i havent even braved nuts yet)
and if the pureed apple keeps working i will add some of the vege protein powder to the apple and rice powder.
be careful re the increase of meds, i would only take them if you really have to, take it day by day. Otherwise you may end up being constipated.
when i was travelling i only took small amount of meds when on the plane and when i had a meal that did have contaminates.
also- another hint as i have suggested to Joe for his upcoming trip, check out providers that are on the web and see if you can organise a delivery of goodies to your first place of accommodation (ie order it a couple of days before you leave) and check with trip organisers/accommodaiton regarding the delivery.
Not sure what the range is like there but in Australia these type of web based stores will have small packs or meal sizes of things like Rice milk or soy milk which you can use in a day pack, saves you having to take 2.5weeks worth of rations in your bag.
of course the other hint is printing out the Ant 'notice to the chef' card that gives clear instructions on what you can eat and how to cook it (ie no butter) if you have had a few days of rice cakes and apple juice then it is fantastic to have some steamed fish and well cooked veges, and to have a meal 'stress free'
hope this helps
re protein - one thing i have found here in Australia, is a vege protein powder that is not soy based (you buy it as a loose powder in health food shop). I have been adding it to rice milk and having it with my GF/SF cereal to ensure i am getting enough protein (as i havent even braved nuts yet)
and if the pureed apple keeps working i will add some of the vege protein powder to the apple and rice powder.
be careful re the increase of meds, i would only take them if you really have to, take it day by day. Otherwise you may end up being constipated.
when i was travelling i only took small amount of meds when on the plane and when i had a meal that did have contaminates.
also- another hint as i have suggested to Joe for his upcoming trip, check out providers that are on the web and see if you can organise a delivery of goodies to your first place of accommodation (ie order it a couple of days before you leave) and check with trip organisers/accommodaiton regarding the delivery.
Not sure what the range is like there but in Australia these type of web based stores will have small packs or meal sizes of things like Rice milk or soy milk which you can use in a day pack, saves you having to take 2.5weeks worth of rations in your bag.
of course the other hint is printing out the Ant 'notice to the chef' card that gives clear instructions on what you can eat and how to cook it (ie no butter) if you have had a few days of rice cakes and apple juice then it is fantastic to have some steamed fish and well cooked veges, and to have a meal 'stress free'
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes,
I'm hoping there's a chance you can help me. We need to make a decision about travelling to Germany tonight. I had written someone in Germany for information about grocery availability, but haven't received a response.
There is an Aldi's very close to the apartment we would stay in. Do you know if they readily sell lamb, pork and turkey at Aldi's in Europe? I only buy Boar's Head turkey, but I have a feeling it's not available overseas. My other need would be for asparagus, Brussel sprouts and cauliflower. The Aldi's by my house doesn't carry GF mixes, though I probably wouldn't buy them unless I were desperate.
If we go, I plan on bringing my food suitcase packed with the dry items I usually carry and am hoping I can pack the semi-liquid items in my carry-on suitcase as I do in the U.S. The flight would be about 12-13 hours. I'm thinking I might be able to bring a freezer pack and put some frozen, cooked meat with it and still have it be safe when I arrive. If we leave at night, I'd only need to worry about dinner, which would be a sandwich I'd carry on, and breakfast, which could be GF cereal with homemade milk.
I admire what you did on your trip to France, but I don't want to be famished much of the time while I'm there. My weight is down to 93 lbs. and I'm worried about losing more.
Gloria
I'm hoping there's a chance you can help me. We need to make a decision about travelling to Germany tonight. I had written someone in Germany for information about grocery availability, but haven't received a response.
There is an Aldi's very close to the apartment we would stay in. Do you know if they readily sell lamb, pork and turkey at Aldi's in Europe? I only buy Boar's Head turkey, but I have a feeling it's not available overseas. My other need would be for asparagus, Brussel sprouts and cauliflower. The Aldi's by my house doesn't carry GF mixes, though I probably wouldn't buy them unless I were desperate.
If we go, I plan on bringing my food suitcase packed with the dry items I usually carry and am hoping I can pack the semi-liquid items in my carry-on suitcase as I do in the U.S. The flight would be about 12-13 hours. I'm thinking I might be able to bring a freezer pack and put some frozen, cooked meat with it and still have it be safe when I arrive. If we leave at night, I'd only need to worry about dinner, which would be a sandwich I'd carry on, and breakfast, which could be GF cereal with homemade milk.
I admire what you did on your trip to France, but I don't want to be famished much of the time while I'm there. My weight is down to 93 lbs. and I'm worried about losing more.
Gloria
You never know what you can do until you have to do it.
Gloria,
There are a few tips on German stores in this thread. Can you read German? There are a few links to GF resouces in Germany, (such as local celiac chapters, etc.), but they're in German, of course.
http://forums.glutenfree.com/post73790.html
Tex
There are a few tips on German stores in this thread. Can you read German? There are a few links to GF resouces in Germany, (such as local celiac chapters, etc.), but they're in German, of course.
http://forums.glutenfree.com/post73790.html
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
These sites also might be helpful:
http://www.celiachandbook.com/germany.html
This one is in English:
http://www.dzg-online.de/english.41.0.html
Another English site:
http://celiac-disease.com/eating-gluten ... ny-part-2/
Tex
http://www.celiachandbook.com/germany.html
This one is in English:
http://www.dzg-online.de/english.41.0.html
Another English site:
http://celiac-disease.com/eating-gluten ... ny-part-2/
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi there gloria
good for you for being brave and embracing this trip
to answer your questions
Aldi - germany - when you go to the aldi web site there are different regions of aldi and the products in each store is very region specific. I would maybe write them an email and ask them direct.
travelling internationally carrying any food items/liquid items in your hand luggage comes under close scrutiny. Any food storage vessel (ie bag or container) that holds more than 100mls will have to be justified. i had no issues carry items to last 30 hours.
If you take any more than that then there is a risk they will not let you carry all of it as Hand Luggage. The rules are very strict and are the same world wide.
my suggestion for taking supplies, check custom rules for destination country and guidelines for your air carrier about packing the items into a small esky type container and putting dry ice with them. as long as the esky is sealed with strong industrial grade tape and wrapped in two laters of high grade clear plastic which is taped with industrial tape. I have used this techinque for shipping biological samples from PNG to Australia (they had to endure a 28hr transit in 30 degree high humidy countries)
the cereal and the milk for on the the plane is a great idea (and that is what I will do next time)- be mindful, most airlines will not store food items for you, ie will not store cold items, when i took colder items with me on the plane, i had two portion size apple juices that were frozen that kept the other items cold for about 6 hours.
I carried these items wrapped in tea towel in plastic bag, again be mindful that at any security check point you will have to totally unpack these put them on the tray for x-ray and inspection and show your doctors letter. i always carried this at the top of my backpack.
I will check out the net - another good option is finding a supplier that is web based that can deliver. Order before you leave so that it arrives the day you arrive. you may pay a bit extra for delivery but to ensure you have supplies of staples it is well worth it.
what area of germany will you be?
good for you for being brave and embracing this trip
to answer your questions
Aldi - germany - when you go to the aldi web site there are different regions of aldi and the products in each store is very region specific. I would maybe write them an email and ask them direct.
travelling internationally carrying any food items/liquid items in your hand luggage comes under close scrutiny. Any food storage vessel (ie bag or container) that holds more than 100mls will have to be justified. i had no issues carry items to last 30 hours.
If you take any more than that then there is a risk they will not let you carry all of it as Hand Luggage. The rules are very strict and are the same world wide.
my suggestion for taking supplies, check custom rules for destination country and guidelines for your air carrier about packing the items into a small esky type container and putting dry ice with them. as long as the esky is sealed with strong industrial grade tape and wrapped in two laters of high grade clear plastic which is taped with industrial tape. I have used this techinque for shipping biological samples from PNG to Australia (they had to endure a 28hr transit in 30 degree high humidy countries)
the cereal and the milk for on the the plane is a great idea (and that is what I will do next time)- be mindful, most airlines will not store food items for you, ie will not store cold items, when i took colder items with me on the plane, i had two portion size apple juices that were frozen that kept the other items cold for about 6 hours.
I carried these items wrapped in tea towel in plastic bag, again be mindful that at any security check point you will have to totally unpack these put them on the tray for x-ray and inspection and show your doctors letter. i always carried this at the top of my backpack.
I will check out the net - another good option is finding a supplier that is web based that can deliver. Order before you leave so that it arrives the day you arrive. you may pay a bit extra for delivery but to ensure you have supplies of staples it is well worth it.
what area of germany will you be?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
These three stores look like good bets:
http://iguide.travel/Germany/Eating/All ... _Sufferers
Oops, never mind - the last two are mentioned in thread linked to in my first post. The Reformhaus chain of health food stores looks like a good possibility, though. It appears that they have 2,000 stores in Germany.
http://www.reformhaus.de/branche/reformhaeuser.htm
Tex
http://iguide.travel/Germany/Eating/All ... _Sufferers
Oops, never mind - the last two are mentioned in thread linked to in my first post. The Reformhaus chain of health food stores looks like a good possibility, though. It appears that they have 2,000 stores in Germany.
http://www.reformhaus.de/branche/reformhaeuser.htm
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Charlotte
in trying to find a site for gloria in germany i came across this one that delivers to alaska
http://www.shoporganic.com/customer_service
in trying to find a site for gloria in germany i came across this one that delivers to alaska
http://www.shoporganic.com/customer_service
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Gloria
this forum talks about turkey and the best place to get meat
http://forums.glutenfree.com/topic9308.html
Further down the post on this forum it has a list of the ingredients translated into German (nitrates preservatives etc)
this forum talks about turkey and the best place to get meat
http://forums.glutenfree.com/topic9308.html
Further down the post on this forum it has a list of the ingredients translated into German (nitrates preservatives etc)
I am finding that Halal markets are your better place to purchase meats. It's not exactly my first choice, but I am finding we have trouble getting our meat from our previous (super awesome) Glatt Kosher source. They're expensive, use nitrates, and spices I can no longer have (Onion and garlic) in their Würstchen and, without a vehicle we can't get it ourselves to save on cost.
So, in looking around for something else when my mom was here the first time, we found the local meat market here run by a Turkish family. In inquiring about the meat and all, the slaughtering process is basically the same as kosher slaughter, and they disallow any of the same things we disallow.
I can go there and find quality (Grade A) Beef, Turkey, Chicken and Lamb... and the cost is actually under the cost we have found at the local German stores, and better quality (fresh!!) meat. I have been shocked at the prices, as they are literally half the price of what we were paying in the local stores, and a third of our Kosher store's prices.