Hi everyone!
I want to quickly introduce myself.
I'm a 34 years old male from The Netherlands!
Over the years I have been suffering from a lot of vague health problems. What it comes down to is that I feel really low in energy, have serious concentration problems, brainfog, muscle pains, etc..
I have been diagnosed with the following: add, meniere, lymphocytic colitis, b12 deficiency.
LC has been diagnosed in march this year. I already had bowel problems, severe D and just plain miserable living conditions for over a year before they diagnosed me.
I waited a long time with doing tests, partly because of my hectic life (moving around like crazy), but also because i am the type of guy that thinks things will pass in time and also try to treat them 'naturally'..
After a year it was clear that it wouldn't go away anymore, it was unbearable, i felt literally like crap! I lost a lot of weight, hair and lust for life... so I decided to go the hospital for tests.
They did a lot of tests and finally diagnosed the LC.
I got entocort and that fixed the D instantly! It was unbelievable after having not a normal stool in over a year that I had a normal toilet experience again!
2 month's ago i started taking 2 capsules instead of 3 and i get more gas problems but still fairly normal stools..
In the meanwhile I still felt pretty lousy, so I recently had some bloodtests done..
It appeared that my b12 level was low: 80 pmol/l
Now I am on injections (the past 3 weeks) and hope to feel a bit more alive soon!
My health has put a serious burden on my life and relationship and it has come to a point where it feels hard to cope with just the simple daily stuff.
I really want to do get better and find the best ways of dealing with the problems I have and hope to find some good suggestions on this forum!
Best wishes for 2012!!!!!
Henry
HI from Holland!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Welcome Henry from Fergus Falls, Minnesota. Thank you for sharing your story.
Love,
Joanna
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Hi Henry,
Welcome to the board. The B-12 deficiency, and the fatigue/exhaustion are due to the LC. When you control the LC, those symptoms will slowly fade away.
Unfortunately, the gastroenterologists don't actually know how to treat LC. The Entocort will help to suppress the inflammation that causes the disease symptoms, but it cannot prevent the inflammation from redeveloping, and as soon as you stop taking the Entocort, the symptoms will relapse. We have found that the only way to get lasting remission, is to prevent the inflammation from developing in the first place, and the only to do that is to eliminate from our diet, the foods that are causing the inflammation.
The problem is that when the genes that predispose to LC are triggered, genes that predispose to certain food-sensitivities are also triggered, at the same time, so that we instantly become sensitive to certain foods, and if we eat those foods, they cause our immune system to launch an autoimmune reaction in our intestines, which causes the inflammation, that is associated with the disease. The most common food-sensitivity is gluten, and most of us are also sensitive to all dairy products. About half of us are also sensitive to soy and legumes, and some of us have additional food-sensitivities, as well. The primary problem, though, is gluten.
Most doctors will test us for celiac disease, and then tell us that since the test result was negative that we can't be gluten-sensitive, but they are wrong. The type of gluten-sensitivity that we have cannot be detected by the classic celiac blood tests. Those tests will only detect fully-developed celiac disease, which most of us do not have, but we are still just as sensitive to gluten as the average celiac. The only laboratory tests that will detect the type of food-sensitivities that we have, are stool tests offered by a lab in Dallas, Texas, (Enterolab), and no other lab, anywhere in the world, has any type of tests that are accurate enough to be reliable, for this purpose.
Therefore, most people on this board are treating their disease by either diet changes alone, or diet changes in combination with a medication. Many of us, (myself included), have been in remission for many years, by diet alone. Unfortunately, because of inadequate training, most GI specialists are unaware of the diet connection, and they will argue that diet has nothing to do with the disease. Because of that, most of us have to take charge of our own health, and work out our own treatment program. Otherwise, we have a choice of taking powerful drugs for the rest of our life, or living with the symptoms of the disease, and neither one of those are acceptable options, in my opinion.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to the board. The B-12 deficiency, and the fatigue/exhaustion are due to the LC. When you control the LC, those symptoms will slowly fade away.
Unfortunately, the gastroenterologists don't actually know how to treat LC. The Entocort will help to suppress the inflammation that causes the disease symptoms, but it cannot prevent the inflammation from redeveloping, and as soon as you stop taking the Entocort, the symptoms will relapse. We have found that the only way to get lasting remission, is to prevent the inflammation from developing in the first place, and the only to do that is to eliminate from our diet, the foods that are causing the inflammation.
The problem is that when the genes that predispose to LC are triggered, genes that predispose to certain food-sensitivities are also triggered, at the same time, so that we instantly become sensitive to certain foods, and if we eat those foods, they cause our immune system to launch an autoimmune reaction in our intestines, which causes the inflammation, that is associated with the disease. The most common food-sensitivity is gluten, and most of us are also sensitive to all dairy products. About half of us are also sensitive to soy and legumes, and some of us have additional food-sensitivities, as well. The primary problem, though, is gluten.
Most doctors will test us for celiac disease, and then tell us that since the test result was negative that we can't be gluten-sensitive, but they are wrong. The type of gluten-sensitivity that we have cannot be detected by the classic celiac blood tests. Those tests will only detect fully-developed celiac disease, which most of us do not have, but we are still just as sensitive to gluten as the average celiac. The only laboratory tests that will detect the type of food-sensitivities that we have, are stool tests offered by a lab in Dallas, Texas, (Enterolab), and no other lab, anywhere in the world, has any type of tests that are accurate enough to be reliable, for this purpose.
Therefore, most people on this board are treating their disease by either diet changes alone, or diet changes in combination with a medication. Many of us, (myself included), have been in remission for many years, by diet alone. Unfortunately, because of inadequate training, most GI specialists are unaware of the diet connection, and they will argue that diet has nothing to do with the disease. Because of that, most of us have to take charge of our own health, and work out our own treatment program. Otherwise, we have a choice of taking powerful drugs for the rest of our life, or living with the symptoms of the disease, and neither one of those are acceptable options, in my opinion.
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.
Thanks Tex(Wayne) and Joanna!
I had a gluten test done which turned out negative, but i seriously want to try the gluten free route to see what it does!
My normal diet consists of bread, dutch cheese, meat, potato, cooked vegetables, coffee (and of course lots of the unhealthy stuff like chips, fries, candy, cookies etc.)
What apart from bread should i change and what is a good substitute?
Last year i ate a lot of raw food, mostly salads which didn't go down that nicely..
I had a gluten test done which turned out negative, but i seriously want to try the gluten free route to see what it does!
My normal diet consists of bread, dutch cheese, meat, potato, cooked vegetables, coffee (and of course lots of the unhealthy stuff like chips, fries, candy, cookies etc.)
What apart from bread should i change and what is a good substitute?
Last year i ate a lot of raw food, mostly salads which didn't go down that nicely..
Re: holland
All the raw fruit, even banana?scrowley wrote:I found the dairy the worst of all, i would get rid of that too and all the raw fruit and veggies.
good luck,
sheila
I've read that dutch cheese is ok since it is 'old' cheese and does not cause problems for lactose intolerance, i hope this is true!
hi
banana is good.
I skin all the fruit and blend it but never eat any berries or anything with seeds in them, so stick to cantaloupe, peaches etc........ that works for me but i have been healing for longer than you so go easy.
apparently its the caesin in cheese not the lactose, but i am new to all of this too so not the expert.
I skin all the fruit and blend it but never eat any berries or anything with seeds in them, so stick to cantaloupe, peaches etc........ that works for me but i have been healing for longer than you so go easy.
apparently its the caesin in cheese not the lactose, but i am new to all of this too so not the expert.
Sheila is quite correct. Unfortunately, it's not lactose that's the problem. Lactose is a sugar, and only proteins can cause allergies and autoimmune reactions. We are sensitive to the primary protein, (casein), which is in all dairy products. Not everyone here is sensitive to casein, but probably at least 95% of those who are gluten-sensitive, are also sensitive to casein, and at least half of us, are sensitive to soy, including the soy lecithin that is in so many foods.Henry wrote:I've read that dutch cheese is ok since it is 'old' cheese and does not cause problems for lactose intolerance, i hope this is true!
Fiber does not cause an autoimmune reaction, but it tends to perpetuate a flare, because it irritates our already-inflamed intestines, therefore, until our guts have sufficient time to heal, virtually all of us have to minimize the fiber in our diet. As Sheila mentioned, banana is just about the only safe fruit that most of us can handle, and not everyone on this board can tolerate bananas. If you eat any fruits or vegetables at all, they should always be peeled, and over-cooked, and in small amounts. After you heal, you can slowly reintroduce raw fruits and vegetables into your diet, again.
You need to study a list of foods that contain gluten, and take it with you when shopping for food, and learn to read all labels thoroughly, because gluten is in many, many products, and so is casein. There are detailed lists on this board, in the forum on "Information on Diet", for example. You can also find information there, on how to do an elimination diet, to help determine your food-sensitivities.
With this disease, just eliminating most gluten won't do you much good - the inflammation will continue. We have to eliminate all of it, in order to control the disease, and that's not easy to do, at least not at first. Eventually, it becomes second nature.
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.
Henry, welcome to our family. I regained my health and happiness because of this board. I used diet and entocort. You will find your way through this if you follow the wonderful advice and wisdom that is so generously given here.
Love JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Henry, welcome!
We have all been through this, many of us have been tested negative for gluten intolerance and been told we can eat "anything", and there is no connection between diet and this disease. How can there be no connection between a bowel disease and what we put in it? It's ridiculous, right?
I am relatively new here, and am battling with MC on a daily basis. I am nowhere near achieving remission, but the horrible D is gone. I deal with C more than D.
The way you are reacting to changing your diet is typical of all of us. I went through serious withdrawal, and denial.
I am sensitive to all poultry, corn, rice, soy, gluten, the casein in dairy, eggs, pork, and many other things. Finding things to eat is a real problem, as is constantly cooking and cleaning up, but I am managing.
When you begin to feel better you will see it's worth it.
Happy new year!
We have all been through this, many of us have been tested negative for gluten intolerance and been told we can eat "anything", and there is no connection between diet and this disease. How can there be no connection between a bowel disease and what we put in it? It's ridiculous, right?
I am relatively new here, and am battling with MC on a daily basis. I am nowhere near achieving remission, but the horrible D is gone. I deal with C more than D.
The way you are reacting to changing your diet is typical of all of us. I went through serious withdrawal, and denial.
I am sensitive to all poultry, corn, rice, soy, gluten, the casein in dairy, eggs, pork, and many other things. Finding things to eat is a real problem, as is constantly cooking and cleaning up, but I am managing.
When you begin to feel better you will see it's worth it.
Happy new year!
Thanks everyone!
It is obvious that i have to change my diet! I am going to look into a GF/DF diet here on this forum.
Lesley, I am not in denial, it is just not clear to me what i can and cannot eat. For instance, I've been reading that potatoes are gluten 'safe'
and here I read that potato is a nono. That is confusing to me. Also where I am living there is no whole foods and it is much more difficult and expensive
to get GF ingredients.
It is obvious that i have to change my diet! I am going to look into a GF/DF diet here on this forum.
Lesley, I am not in denial, it is just not clear to me what i can and cannot eat. For instance, I've been reading that potatoes are gluten 'safe'
and here I read that potato is a nono. That is confusing to me. Also where I am living there is no whole foods and it is much more difficult and expensive
to get GF ingredients.
Hello Henry, about the diet can be very confusing, but keep in mind for many of us there are some common triggers, but also in many aspects we differ in the type of food we react to. If you start reading here you will discover the difference. Gluten soy and milk, the idea behind that is they trigger an auto immune reaction and as long as you keep on eating them you MC will stay active (although not everybody has to avoid all three of them, for some gluten, or gluten and milk is enough). All the other long lists of things people can't eat, have often to do with the inflamed gut. As soon as the gut is healed often people are able to add for ingredients to their diet. But also in this aspect we are not same at all.
It will take you while to figure with the whole food stuff how it works and what your no's and yes are. Just take your time. Really for all of us it took as at least a couple of weeks, if not a couple of months to figure how the thing with food, diet and MC works.
By the way welcome here, from another Dutchy (although my flags may give you another impression). Where are you from in NL? I am from the North in Groningen. And also finding gluten free food in the Netherlands, there is a lot available but also that will take you while to figure where you can get it. There are couple on line shops, also the Jumbo is one of the better supermarkets when it comes to gluten free. Also a very useful source for gluten free in the Netherlands the message board www.coeliakieforum.nl
It will take you while to figure with the whole food stuff how it works and what your no's and yes are. Just take your time. Really for all of us it took as at least a couple of weeks, if not a couple of months to figure how the thing with food, diet and MC works.
By the way welcome here, from another Dutchy (although my flags may give you another impression). Where are you from in NL? I am from the North in Groningen. And also finding gluten free food in the Netherlands, there is a lot available but also that will take you while to figure where you can get it. There are couple on line shops, also the Jumbo is one of the better supermarkets when it comes to gluten free. Also a very useful source for gluten free in the Netherlands the message board www.coeliakieforum.nl
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Hi Henry,
Welcome! I see you are are fairly young so it has got to be rough to have the "brain fog", joint pain and fatigue. I've been gluten free for about 3 months and can tell you my joint pain is gone 100%, the brain fog is gone, the fatigue is better although I still tire easily at times.
I'm not sure if you are married or single but one thing I found helpful was to cook larger amounts of veggies at once then microwave portions during the week. I also did that with meats. That way the cooking load is easier. Brandy
Welcome! I see you are are fairly young so it has got to be rough to have the "brain fog", joint pain and fatigue. I've been gluten free for about 3 months and can tell you my joint pain is gone 100%, the brain fog is gone, the fatigue is better although I still tire easily at times.
I'm not sure if you are married or single but one thing I found helpful was to cook larger amounts of veggies at once then microwave portions during the week. I also did that with meats. That way the cooking load is easier. Brandy
Henry,
I can eat potatoes safely, but some here can't. I can't eat rice, but most here can. Everybody has different sensitivities. You have to discover yours.
Casein seems to be a common factor for most of us, as is gluten.
Sometimes just cutting out gluten helps people. I hope you are one of the lucky ones.
I can eat potatoes safely, but some here can't. I can't eat rice, but most here can. Everybody has different sensitivities. You have to discover yours.
Casein seems to be a common factor for most of us, as is gluten.
Sometimes just cutting out gluten helps people. I hope you are one of the lucky ones.
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Henry, Welcome.
I am fairly new here myself. I am so thankful to have found this site and for all the direction I am getting here that I did not get from my medical doctor or naturopathic doctor I have been seeing.
I have been on a gluten-free diet for a few weeks. I saw some results within 10 days, but still not normal yet. I am convinced that diet has everything to do with healing from my LC. I am still trying to figure out my food sensitivities, and although I initially excluded gluten only, I recently decided to exclude dairy as well.
As everyone else is saying - each of us has found, or are finding, which foods we are sensitive to, but gluten is most always a definite intolerance.
Glad you found this site. Everyone is very supportive, and you will be encouraged by the success stories you hear about.
Paula
I am fairly new here myself. I am so thankful to have found this site and for all the direction I am getting here that I did not get from my medical doctor or naturopathic doctor I have been seeing.
I have been on a gluten-free diet for a few weeks. I saw some results within 10 days, but still not normal yet. I am convinced that diet has everything to do with healing from my LC. I am still trying to figure out my food sensitivities, and although I initially excluded gluten only, I recently decided to exclude dairy as well.
As everyone else is saying - each of us has found, or are finding, which foods we are sensitive to, but gluten is most always a definite intolerance.
Glad you found this site. Everyone is very supportive, and you will be encouraged by the success stories you hear about.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."