Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Newbie
Hi All my name is KAren and I was diagnosed with Lymphocytic Colitis yesterday but suffering the sympots after a colonoscopy since August last year. I have started on sulvazine has anyone been on this drug apparently there a lot of side effects and it can effect the liver as well so regular blood tests. This disease from what I understand is not curable but managable. I am 51 years old I only eat healthy foods and GF and I also go to gym everyday day so pretty fit for an old girl. I was after some more info tips and just to be able to chat with people with the same disease would be great. I live in Brisbane Australia so not sure where others are from. My doc told me that it is very rare I just hope I can get some ideas as my tummy cramps and diarroha is driving me crazy.
Karen Moran
Hi Karen,
I'm from Pennsylvania, USA.
I am in remission and keeping to my very restrictive diet.
The past 2 1/2 years have been quite a journey for me.
In looking back, it was crucial to take the big four out my diet ......gluten, soy, dairy, eggs.
Then I tested with Enterolab and found out I Had other intolerances to many other foods. So, I eliminated them, took Vit. D, & betaine HCL (for low stomach acid). That's all I could handle at first.
It takes time and patience and willpower to heal, but it can be done. Tex's book...in upper right hand corner of the main page, is a wealth of information to help you understand what's going on with your body.
Many doctors do not understand this disease, and you have to be your own advocate to start to understand and heal. This group is great. There is so much combined knowledge here.
I did not take any drugs in my healing process so I can't comment on the drug your doc wants you to take. Someone else will chime in for that.
Take it one step at a time. It's really all about foods and understanding what's going on in your body right now.
Best of luck and ask any questions you'd like.....we are a diverse group that are passionate to help each other.
I'm from Pennsylvania, USA.
I am in remission and keeping to my very restrictive diet.
The past 2 1/2 years have been quite a journey for me.
In looking back, it was crucial to take the big four out my diet ......gluten, soy, dairy, eggs.
Then I tested with Enterolab and found out I Had other intolerances to many other foods. So, I eliminated them, took Vit. D, & betaine HCL (for low stomach acid). That's all I could handle at first.
It takes time and patience and willpower to heal, but it can be done. Tex's book...in upper right hand corner of the main page, is a wealth of information to help you understand what's going on with your body.
Many doctors do not understand this disease, and you have to be your own advocate to start to understand and heal. This group is great. There is so much combined knowledge here.
I did not take any drugs in my healing process so I can't comment on the drug your doc wants you to take. Someone else will chime in for that.
Take it one step at a time. It's really all about foods and understanding what's going on in your body right now.
Best of luck and ask any questions you'd like.....we are a diverse group that are passionate to help each other.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Hi Linda
OMG thank goodness I have met somone that knows what I am dealing with. How did you get into remission? I already before diagnosed was gluten free buit mainly wheat I still seemed to tolerate gluten like oats weird. I have been off dairy for 3 months but I do have the occassional soy chino but that goes through me too. I had corn last night bad move suffering today well I think it was the corn. What fods can you not tolerate I think I will have to start to illiminate some more foods. I am lucky that I work in one of the Biggest Medical REsearch Institues in Australia and I have asked to go onto a clinical trial fo rhtis disease if they get funding for it. But because it is so rare that may not happen. WE do not have testing Enterolab in Australia unfortunatley. I had an endoscopy last year to test for celiac but it came back negative. WEll its all a learing curve I will just take everything in and see if I can get my body back to the way it used to be.
KAren
OMG thank goodness I have met somone that knows what I am dealing with. How did you get into remission? I already before diagnosed was gluten free buit mainly wheat I still seemed to tolerate gluten like oats weird. I have been off dairy for 3 months but I do have the occassional soy chino but that goes through me too. I had corn last night bad move suffering today well I think it was the corn. What fods can you not tolerate I think I will have to start to illiminate some more foods. I am lucky that I work in one of the Biggest Medical REsearch Institues in Australia and I have asked to go onto a clinical trial fo rhtis disease if they get funding for it. But because it is so rare that may not happen. WE do not have testing Enterolab in Australia unfortunatley. I had an endoscopy last year to test for celiac but it came back negative. WEll its all a learing curve I will just take everything in and see if I can get my body back to the way it used to be.
KAren
Karen Moran
Karen,
I found that eating a very bland simple diet works best. Choose a protein. I have found that lamb, turkey, and wild game meat works best. Try veggies that are peeled and over cooked like squash, carrots, & green beans.
I can't tolerate rice, but many people in group can. There are many products like rice cakes, rice flour, rice protein powders etc to try.
Oats, while not gluten, are cross contaminated with wheat in the fields, so be aware of them.
Some in the group can eat almonds and use almond butter,for a healthy fat, so you're not hungry.
You may want to try an elimination diet to see what you can tolerate. I do better with seeds like sunflower and pumpkin, but only in small amounts, and usually ground into butter.
Keep a diary of what you eat and reactions.
We have a resident expert, Gabes, from Australia. I sure she will add to what I've mentioned.
Remember to eliminate the big four foods first..some have a great deal of relief from just that!
PS...my food intolerances are listed to the left of this post under my name.....I am extreme....not everyone is like me.
I found that eating a very bland simple diet works best. Choose a protein. I have found that lamb, turkey, and wild game meat works best. Try veggies that are peeled and over cooked like squash, carrots, & green beans.
I can't tolerate rice, but many people in group can. There are many products like rice cakes, rice flour, rice protein powders etc to try.
Oats, while not gluten, are cross contaminated with wheat in the fields, so be aware of them.
Some in the group can eat almonds and use almond butter,for a healthy fat, so you're not hungry.
You may want to try an elimination diet to see what you can tolerate. I do better with seeds like sunflower and pumpkin, but only in small amounts, and usually ground into butter.
Keep a diary of what you eat and reactions.
We have a resident expert, Gabes, from Australia. I sure she will add to what I've mentioned.
Remember to eliminate the big four foods first..some have a great deal of relief from just that!
PS...my food intolerances are listed to the left of this post under my name.....I am extreme....not everyone is like me.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
Hi Linda
Thanks so much. I find that oats made on water is the only thing that actually does not go straight through me and I love them. I will start a diary today on how I react with what foods. Its weird because last week I had for lunch an egg white omlette with mushroom and it was fine then I had it again another dya and boy did it cause me issues. So what do you do in this case? I see a lot of your food intolerances on the side there a re a few that I cant eat and I think corn is at the top of the list after last night. I jsut cant wait to feel normal again my tummy is not good today at all I jsut hope I dont have to live with this for hte restof my life. So grateful for your input.
Thanks
Karen
Thanks so much. I find that oats made on water is the only thing that actually does not go straight through me and I love them. I will start a diary today on how I react with what foods. Its weird because last week I had for lunch an egg white omlette with mushroom and it was fine then I had it again another dya and boy did it cause me issues. So what do you do in this case? I see a lot of your food intolerances on the side there a re a few that I cant eat and I think corn is at the top of the list after last night. I jsut cant wait to feel normal again my tummy is not good today at all I jsut hope I dont have to live with this for hte restof my life. So grateful for your input.
Thanks
Karen
Karen Moran
Karen,
Usually we try to test a food to see if we have a reaction. If you want to test eggs, then eat those for three days in a row, with foods you know you don't react to.
Actually, you may want to start out with just a meat & mushy veggie for a few days to see if it sits well, then try adding one other food at a time.
Try some ginger or peppermint tea too.
It's really important to read food labels....there are so many additives especially soy ....become a food detective!
Try not to stress because that makes things worse.....I know...easier said than done, right?
One day at a time......
Usually we try to test a food to see if we have a reaction. If you want to test eggs, then eat those for three days in a row, with foods you know you don't react to.
Actually, you may want to start out with just a meat & mushy veggie for a few days to see if it sits well, then try adding one other food at a time.
Try some ginger or peppermint tea too.
It's really important to read food labels....there are so many additives especially soy ....become a food detective!
Try not to stress because that makes things worse.....I know...easier said than done, right?
One day at a time......
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
LC Oct. 2012
MTHFR gene mutation and many more....
You're welcome!-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Hi Karen!
welcome to the group - but sorry you had to find us...
Where abouts in Brisbane are you? which GI diagnosed you?
I lived in Brisbane for 20 years, and Patrick Walsh (GI on northside) diagnosed my MC.
(moved back to the Hunter Valley 12 months ago)
The 'sucky' part of MC is that there is no quick fix or guaranteed solution. A med that works quite well for one person, can cause major chaos for another.
And based on the experience of contributors here, most of the medications people take are a band aid type thing, diet and lifestyle changes is the best way to optimise wellness and long term management of symptoms.
As linda mentioned, keeping a journal is a fantastic way to pinpoint issues. Sticking to a bland, minimal ingredient, well cooked meals works very well.
you can do the enterolab testing from Australia, it is just a bit more expensive with courier costs.
at the time of diagnosis I could not afford the testing, so figured out my major and medium level triggers via elimination diet. took me about 6 months or so. if you think you can embrace this let me know and I will give you further info.
in line with your other post - there are some colitis type facebook forums- Albeit they focus namely on medication solutions and not so much on strict diet and lifestyle changes. There are quite a few facebook groups about gut health and IBS, aimed at treating SIBO / H Pylori /Candida, albeit the treatment approach for these types of things would be a huge trigger if you are in chronic MC inflammation... so tread with caution.
One thing many have learnt is that MC is not the same as other IBD's
A good start is reading the posts here, posts by newbies and the subsequent discussions, reading the member success stories will give you an idea of what people have done, how long it took etc
if you are into wholistic therapies, I can recommend a fantastic acupuncturist inner northside of brisbane who treated me for over 10 years...
hope this helps!
chat soon
welcome to the group - but sorry you had to find us...
Where abouts in Brisbane are you? which GI diagnosed you?
I lived in Brisbane for 20 years, and Patrick Walsh (GI on northside) diagnosed my MC.
(moved back to the Hunter Valley 12 months ago)
The 'sucky' part of MC is that there is no quick fix or guaranteed solution. A med that works quite well for one person, can cause major chaos for another.
And based on the experience of contributors here, most of the medications people take are a band aid type thing, diet and lifestyle changes is the best way to optimise wellness and long term management of symptoms.
As linda mentioned, keeping a journal is a fantastic way to pinpoint issues. Sticking to a bland, minimal ingredient, well cooked meals works very well.
you can do the enterolab testing from Australia, it is just a bit more expensive with courier costs.
at the time of diagnosis I could not afford the testing, so figured out my major and medium level triggers via elimination diet. took me about 6 months or so. if you think you can embrace this let me know and I will give you further info.
in line with your other post - there are some colitis type facebook forums- Albeit they focus namely on medication solutions and not so much on strict diet and lifestyle changes. There are quite a few facebook groups about gut health and IBS, aimed at treating SIBO / H Pylori /Candida, albeit the treatment approach for these types of things would be a huge trigger if you are in chronic MC inflammation... so tread with caution.
One thing many have learnt is that MC is not the same as other IBD's
A good start is reading the posts here, posts by newbies and the subsequent discussions, reading the member success stories will give you an idea of what people have done, how long it took etc
if you are into wholistic therapies, I can recommend a fantastic acupuncturist inner northside of brisbane who treated me for over 10 years...
hope this helps!
chat soon
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Gabes
WOW your a brisbane girl. My specialist is Andrew Bryant he is in SPringhill and I live in Clayfield 5 mins from the city. He has diagnosed me with Lymphocytic colotis is that the same as MC???? Yes please more info on the enterolab would be great and your acupuncturist. Well I am very happy I have somone here in AUS as I know LC is very rare. Looking forward to tlaking to you.
CHeers
Karen
WOW your a brisbane girl. My specialist is Andrew Bryant he is in SPringhill and I live in Clayfield 5 mins from the city. He has diagnosed me with Lymphocytic colotis is that the same as MC???? Yes please more info on the enterolab would be great and your acupuncturist. Well I am very happy I have somone here in AUS as I know LC is very rare. Looking forward to tlaking to you.
CHeers
Karen
Karen Moran
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I used to live at Wavell Heights, Nundah.
Shaun Price Acupuncturist at everton park (not far from Stafford) google the name for the phone number.
things like acupuncture can not 'cure you' but it can help to reduce the inflammation, balance the organs to optmise digestion, and Shaun can also do muscle testing for foods etc (to identify triggers etc)
A fair part of my 'remission' is thanks to Shaun and my best friend who is a naturopath, we collaboratively came up wtih eating plan etc that minimised inflammation and encouraged healing...
if you read the 'info area for newbies' you will see that MC (microscopic colitis) is the collective name for both lymphocytic colitis and collagenous colitis.
symptoms and healing is the same for both. in general terms, it is just the biopsy diagnosis criteria that is different for the two types
we have also people here with various other IBD type issues.... and our knowledge and suggestions have helped them.
I personally dont have info on the entrolab, as i said in my post I couldnt afford it so did elimination diet (and that is what I was offering the information on)
there is sections within the forum where many questions are answered and you can see the results of those that have done it http://www.perskyfarms.com/phpBB2/viewforum.php?f=67
their web site - https://www.enterolab.com/StaticPages/TestInfo.aspx
MC is 'kinda rare' mostly because alot of gastro specialists do not take biopsies and test for it during colonscopy. There are many people here that spent years and years with IBS diagnosis. The rate of people joining this group increases every year ... we have babies, teenagers, young adults, across many countries. MC does not discriminate...
there are a few in Australia. I have met Lynn who lives in Canberra. There is another lady Liz who lives at Beachmere (we have talked on the phone and email), another Helen, who I spoke to on the phone and email for a while, there is a lady in Melbourne who joined the forum as her mum had LC.
most people once they minimise symptoms and 'get their life back' drop away from regular posting....
I have also had the delight to met some overseas members, Ant who lives in hong kong, Joe who lives in North West America. And i have regular email and facebook contact with many others. The gift that came with my MC dx was the chance to meet some pretty awesome people and enhance my life with good friendships!
After many years of digestion issues, it was like a big hug to find people who had been on the same journey....
my advice, grab a cuppa, and read. there is lots to digest (pun intended) on this forum. It might seem scary at first, take a few deep breaths and take your time. the search function is awesome. what you will see is a group of knowledgeable supportive caring people who want to help you get well....
Shaun Price Acupuncturist at everton park (not far from Stafford) google the name for the phone number.
things like acupuncture can not 'cure you' but it can help to reduce the inflammation, balance the organs to optmise digestion, and Shaun can also do muscle testing for foods etc (to identify triggers etc)
A fair part of my 'remission' is thanks to Shaun and my best friend who is a naturopath, we collaboratively came up wtih eating plan etc that minimised inflammation and encouraged healing...
if you read the 'info area for newbies' you will see that MC (microscopic colitis) is the collective name for both lymphocytic colitis and collagenous colitis.
symptoms and healing is the same for both. in general terms, it is just the biopsy diagnosis criteria that is different for the two types
we have also people here with various other IBD type issues.... and our knowledge and suggestions have helped them.
I personally dont have info on the entrolab, as i said in my post I couldnt afford it so did elimination diet (and that is what I was offering the information on)
there is sections within the forum where many questions are answered and you can see the results of those that have done it http://www.perskyfarms.com/phpBB2/viewforum.php?f=67
their web site - https://www.enterolab.com/StaticPages/TestInfo.aspx
MC is 'kinda rare' mostly because alot of gastro specialists do not take biopsies and test for it during colonscopy. There are many people here that spent years and years with IBS diagnosis. The rate of people joining this group increases every year ... we have babies, teenagers, young adults, across many countries. MC does not discriminate...
there are a few in Australia. I have met Lynn who lives in Canberra. There is another lady Liz who lives at Beachmere (we have talked on the phone and email), another Helen, who I spoke to on the phone and email for a while, there is a lady in Melbourne who joined the forum as her mum had LC.
most people once they minimise symptoms and 'get their life back' drop away from regular posting....
I have also had the delight to met some overseas members, Ant who lives in hong kong, Joe who lives in North West America. And i have regular email and facebook contact with many others. The gift that came with my MC dx was the chance to meet some pretty awesome people and enhance my life with good friendships!
After many years of digestion issues, it was like a big hug to find people who had been on the same journey....
my advice, grab a cuppa, and read. there is lots to digest (pun intended) on this forum. It might seem scary at first, take a few deep breaths and take your time. the search function is awesome. what you will see is a group of knowledgeable supportive caring people who want to help you get well....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Karen, welcome the the board.
As Gabes mentions, read the info thread for newbies at the top of the page.
A recent new member had a lot of good diet replies in this thread, you may find it useful.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20898
Note that we recommend finding a safe protein and centering your meals around that. Any vegetables should be well-cooked to mush as fiber causes too much stress in the colon during a flare.
Most of us are gluten and dairy free, many of us also egg and soy free. Many of us are grain free or nearly grain free.
I hope this helps. Feel free to ask many questions, we all did at the beginning.
Nancy
As Gabes mentions, read the info thread for newbies at the top of the page.
A recent new member had a lot of good diet replies in this thread, you may find it useful.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20898
Note that we recommend finding a safe protein and centering your meals around that. Any vegetables should be well-cooked to mush as fiber causes too much stress in the colon during a flare.
Most of us are gluten and dairy free, many of us also egg and soy free. Many of us are grain free or nearly grain free.
I hope this helps. Feel free to ask many questions, we all did at the beginning.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi, Karen.Welcome to our group but as Gabes said, sorry you had to find us. I'm around your age, I was diagnosed with LC 1.5 years ago at age 53. I was very healthy at that time as well. I am one of the lucky ones who didn't have to go on medication. I took Pepto Bismol for 8 weeks and that along with dietary changes was enough to stop the D. I eliminated gluten, dairy, soy and eggs. I eat more protein than I ever did. I have protein for lunch and dinner. The vegetables I eat are cooked to death (I miss salad!) I can tolerate a banana and a small peeled apple daily. My starch is normally a sweet potato. I have been creative with how to cook it to shake things up a bit. I am feeling good and I have gained the weight back that I lost when I first became sick. Search this site and you will gain much useful information. Tex's book was a great help to me as well. You'll find the link at the top of the page in the right-hand corner. And your doctor is wrong, LC is not that rare as I've found out since my diagnosis! Good luck on your journey.
Marcia
Marcia