Hi everyone
I'm new to the forum, although I've been browsing silently for a number of months! Here's my story..
The diarrhoea began in March. I mentioned it to my GP, who sent me for some bacterial tests, which of course came out clear.
Weeks passed and the diarrhoea worsened - I was struggling, feeling very weak, shaky and fatigued. I couldn't make it to work and at this point, was about a month away from my wedding day - I needed to sort this quickly!! I went back to my GP, who did a number of tests, only to suggest that I was becoming anxious about nothing. I was fed up and frustrated so asked him to refer me to a private consultant gastroenterologist.
This was the best demand I ever made! I saw the consultant two days later, and given the urgency to find a solution, he suggested performing a gastroscopy, ultrasound and colonoscopy later that week.
Immediately following the procedures, I remember the doctor saying to my husband, "I couldn't see any inflammation - we may just have to put this down to stress." I was heartbroken, thinking that there would be no solution. At this point, having been through the gastroscopy, and willing to do anything to feel a bit better, I decided to remove gluten and dairy from my diet. I felt an improvement in my body in a few days. I haven't looked back on the diet!
A week later, I returned for a follow up consultation. The doctor explained that I have a condition called Microscopic Colitis, and that it was diagnosed from a biopsy on my colon, which showed increased numbers of lymphocytes. He said that the condition is easily treatable with a course of steroids, and put me on 9mg of budesonide.
The steroids went to work, and made the diarrhoea much more manageable. I went through my wedding day pretty much diarrhoea free!! :D
I'm now six weeks into the steroids. I still haven't has anything near a solid BM, but it is much less often and considerably less watery. The doctor is gradually tapering me off budesonide over the next few weeks.
Now that I've bored you all with my story, here's the question... When the doctor gave me my diagnosis, he said that MC is most common in women in their 50s/60s. I am 23, and he said I was by far the youngest patient he'd ever seen with the condition. Was anyone else diagnosed at a young age? I'd really love to hear from you if you were!
Love Innes
London, UK
Diagnosed at a young age?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
YES!
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Innes,
Welcome to our internet family. While the percentage of members here in your age bracket is relatively low, we do have a significant number of young members and mothers who have joined on behalf of their young children. The younger we are, the faster we heal, so most younger members figure out their food sensitivities, remove them from their diet, recover, and move on. Consequently, it's somewhat unusual for younger members to stick around and post after (and even during) their recovery. After all, most of us have so much going on these days that time seems to fly faster with each passing day, and most people have more things that they would like do do, than they have time in which to do them, and that's especially true when we're young.
It's true that most diagnoses occur in older people, but this is partially because of a self-fulfilling prophecy made when this disease was originally described in the medical literature. It was described as a disease "of middle-aged women", so naturally most GI docs never bothered to look for the disease in males or younger women. And if you don't look for it, you can't find it, because the only way it can be detected and diagnosed is by examining biopsy slides made from samples taken from a patient's colon under the microscope, to look for elevated T-cell infiltration. Eventually, a few doctors discovered that the original age exclusion was invalid, and they began to take biopsy samples from younger patients, and lo and behold, they began to discover that anyone can develop MC at any age. So your doctor is a bit behind the times, but at least he knows enough to look for the disease, so kudos to him for that.
You're off to a good start with the diet, but since you are still not having normal bowel movements, it's pretty clear that you're still reacting to either a food, medication, supplement, or possibly a cosmetic product (such as lipstick, skin cream,shampoo, conditioner, etc.). Most of us here are also sensitive to soy (and all legumes) and many are also sensitive to eggs, so you might trying avoiding those from your diet, to see if that will bring full remission. Otherwise, if you do not remove all of the significant food sensitivities from your diet before you discontinue the budesonide treatment, you will almost surely suffer a full relapse. I would try removing soy first, because after gluten and dairy, it's the next most common problem, and we've found that many of us who react to soy, react even more severely to soy, than to gluten.
Unfortunately, hormones affect MC, and consequently some women react to oral contraceptives, so you might keep that in mind if remission remain elusive after you have made all the diet changes that seem necessary. Even transdermal HRT patches cause some members here to react. But of course, that isn't necessarily true for everyone.
Again, welcome to the board. I have no doubt that you will be able to get your life back, because you are definitely off to a great start with the diet changes. You're obviously motivated, and motivated people get results.
Tex
Welcome to our internet family. While the percentage of members here in your age bracket is relatively low, we do have a significant number of young members and mothers who have joined on behalf of their young children. The younger we are, the faster we heal, so most younger members figure out their food sensitivities, remove them from their diet, recover, and move on. Consequently, it's somewhat unusual for younger members to stick around and post after (and even during) their recovery. After all, most of us have so much going on these days that time seems to fly faster with each passing day, and most people have more things that they would like do do, than they have time in which to do them, and that's especially true when we're young.
It's true that most diagnoses occur in older people, but this is partially because of a self-fulfilling prophecy made when this disease was originally described in the medical literature. It was described as a disease "of middle-aged women", so naturally most GI docs never bothered to look for the disease in males or younger women. And if you don't look for it, you can't find it, because the only way it can be detected and diagnosed is by examining biopsy slides made from samples taken from a patient's colon under the microscope, to look for elevated T-cell infiltration. Eventually, a few doctors discovered that the original age exclusion was invalid, and they began to take biopsy samples from younger patients, and lo and behold, they began to discover that anyone can develop MC at any age. So your doctor is a bit behind the times, but at least he knows enough to look for the disease, so kudos to him for that.
You're off to a good start with the diet, but since you are still not having normal bowel movements, it's pretty clear that you're still reacting to either a food, medication, supplement, or possibly a cosmetic product (such as lipstick, skin cream,shampoo, conditioner, etc.). Most of us here are also sensitive to soy (and all legumes) and many are also sensitive to eggs, so you might trying avoiding those from your diet, to see if that will bring full remission. Otherwise, if you do not remove all of the significant food sensitivities from your diet before you discontinue the budesonide treatment, you will almost surely suffer a full relapse. I would try removing soy first, because after gluten and dairy, it's the next most common problem, and we've found that many of us who react to soy, react even more severely to soy, than to gluten.
Unfortunately, hormones affect MC, and consequently some women react to oral contraceptives, so you might keep that in mind if remission remain elusive after you have made all the diet changes that seem necessary. Even transdermal HRT patches cause some members here to react. But of course, that isn't necessarily true for everyone.
Again, welcome to the board. I have no doubt that you will be able to get your life back, because you are definitely off to a great start with the diet changes. You're obviously motivated, and motivated people get results.
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.
Welcome, Innes! When I went for my first consultation with a GI, he mentioned MC as a possibility but said that it typically affected older women (I'm 31). He still seemed a little hesitant about it once the results from my colonoscopy and endoscopy came back. I wonder if a lot of younger people with MC are just misdiagnosed as having IBS (i.e., we don't know what's wrong with you, so let's call it IBS) or given some over-the-counter meds to control the symptoms and sent on their way. I'm thankful that it was caught on my tests so at least I know it's not just "mystery digestive problems"!
I'm glad you've already made dietary changes and started seeing some improvement. That's great! My doc never tried to prescribe any meds for me; I took Pepto Bismol for a few weeks while also taking a course of antibiotics for H. Pylori that was causing some irritation in my stomach. I'd been GF/DF for a while, and now I'm eating more of a Paleo diet. Things still aren't perfect, but I'm trying to give my body some time to heal.
Oh, and congratulations on the wedding!
Kristen
I'm glad you've already made dietary changes and started seeing some improvement. That's great! My doc never tried to prescribe any meds for me; I took Pepto Bismol for a few weeks while also taking a course of antibiotics for H. Pylori that was causing some irritation in my stomach. I'd been GF/DF for a while, and now I'm eating more of a Paleo diet. Things still aren't perfect, but I'm trying to give my body some time to heal.
Oh, and congratulations on the wedding!
Kristen
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Innes, sorry you're going through this, but I'm glad you are making changes that will no doubt be beneficial to you. Congrats on your marriage.
I am not nearly as young as you at 39, but I was diagnosed at 38 and my doctor went on and on about how young I was to have this, how unusual it was. To the point where it was really unhelpful and discouraging.
Came here and learned that this disease can affect anyone at anytime. And I learned that doctors don't always know everything, especially when it comes to MC. I think the only doctor that understands it is Dr. Fine because he actually has MC.
Best wishes for continued progress, and good luck with the taper.
Nancy
I am not nearly as young as you at 39, but I was diagnosed at 38 and my doctor went on and on about how young I was to have this, how unusual it was. To the point where it was really unhelpful and discouraging.
Came here and learned that this disease can affect anyone at anytime. And I learned that doctors don't always know everything, especially when it comes to MC. I think the only doctor that understands it is Dr. Fine because he actually has MC.
Best wishes for continued progress, and good luck with the taper.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
You forgot about Polly.Nancy wrote:I think the only doctor that understands it is Dr. Fine because he actually has MC.
But I agree that Dr. Fine may well be the only GI specialist who truly understands the disease.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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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Polly,
I was just guessing of course, but I'm pretty sure I'm right.
With your medical background, if you don't understand the disease after living with it for so many years, then I don't have the foggiest idea who might have a better understanding of it, especially regarding the treatment requirements. I believe that you were the very first member of the Negative Biopsy for MC club (without the use of any medications, to boot), thus proving the effectiveness of diet changes for controlling/treating MC. 
Love,
Tex
I was just guessing of course, but I'm pretty sure I'm right.
With your medical background, if you don't understand the disease after living with it for so many years, then I don't have the foggiest idea who might have a better understanding of it, especially regarding the treatment requirements. I believe that you were the very first member of the Negative Biopsy for MC club (without the use of any medications, to boot), thus proving the effectiveness of diet changes for controlling/treating MC. Love,
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.
Welcome Innes.
You have gotten some good advise so far….. but not actually from your doctor. He should not be tapering you off the drug until you have a better handle on your symptoms. It sounds like you are still eating foods that are troublesome. I went on Budesonide and at the same time COMPLETELY overhauled my diet. Because of that I'm sure, I was able to taper down the dose myself as I got slightly constipated. The whole process took 6 months. The consensus here is that one needs at least 4 months on the drug before tapering off. Any sooner and you run the risk of relapse. Tex said that soy and eggs were the next reactive foods, so there is that. I chose to keep eggs in, but we are all different.
What I did do though is get rid of any food that could irritate the intestines. While our guts are inflamed, there are groups of foods that just make things worse…. bunt can be tested back into your diet when you feel better. Some of those are : acid foods like tomato products and citrus, RAW FRUITS AND VEGGIES,legumes, caffeine, peanuts ( It's a legume and a cousin to soy), spicy foods, and oatmeal. The best diet to be on right now is a simple one that consists of protein, cooked easy to digest veggies like squash, sweet potato, and green beans, and white rice. You might be OK with potatoes, but they are a nightshade and some of us react to those. Keep your oil use to olive and coconut. Remember that butter is dairy.
I know that this seems daunting, but try to remind yourself that if you do the work now, you will be much better later. I have been able to add many foods back in since this whole thing started with me 2 1/2 years ago. There is hope. If you want to know for sure what your main food intolerances are, you can always take the tests from Enterolab ( google them).
If you haven't bought Tex's book, you might want to. Just click on the picture of it on this page ( upper right hand corner)
Good luck and keep us posted on your progress≥
Leah
You have gotten some good advise so far….. but not actually from your doctor. He should not be tapering you off the drug until you have a better handle on your symptoms. It sounds like you are still eating foods that are troublesome. I went on Budesonide and at the same time COMPLETELY overhauled my diet. Because of that I'm sure, I was able to taper down the dose myself as I got slightly constipated. The whole process took 6 months. The consensus here is that one needs at least 4 months on the drug before tapering off. Any sooner and you run the risk of relapse. Tex said that soy and eggs were the next reactive foods, so there is that. I chose to keep eggs in, but we are all different.
What I did do though is get rid of any food that could irritate the intestines. While our guts are inflamed, there are groups of foods that just make things worse…. bunt can be tested back into your diet when you feel better. Some of those are : acid foods like tomato products and citrus, RAW FRUITS AND VEGGIES,legumes, caffeine, peanuts ( It's a legume and a cousin to soy), spicy foods, and oatmeal. The best diet to be on right now is a simple one that consists of protein, cooked easy to digest veggies like squash, sweet potato, and green beans, and white rice. You might be OK with potatoes, but they are a nightshade and some of us react to those. Keep your oil use to olive and coconut. Remember that butter is dairy.
I know that this seems daunting, but try to remind yourself that if you do the work now, you will be much better later. I have been able to add many foods back in since this whole thing started with me 2 1/2 years ago. There is hope. If you want to know for sure what your main food intolerances are, you can always take the tests from Enterolab ( google them).
If you haven't bought Tex's book, you might want to. Just click on the picture of it on this page ( upper right hand corner)
Good luck and keep us posted on your progress≥
Leah
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Innes,
I just re read your post and see that you're still having BM trouble on budesonide. I wanted to say that Leah's advice on diet is spot-on, I listened to her last year and got better more quickly as a result. E.g., low fiber, high protein, no raw fruit/veg etc.. This is what it took for me even while on budesonide to improve.
Also I stayed on entocort/budesonide for nearly six months when I weaned off. If you don't have side effects, it might be worth asking your doctor to stay on it longer while you work on diet and taper slowly when you are more normal on the BM front. It's not a systemic steroid so there usually isn't a huge risk.
Again best of luck and keep us posted.
Nancy
I just re read your post and see that you're still having BM trouble on budesonide. I wanted to say that Leah's advice on diet is spot-on, I listened to her last year and got better more quickly as a result. E.g., low fiber, high protein, no raw fruit/veg etc.. This is what it took for me even while on budesonide to improve.
Also I stayed on entocort/budesonide for nearly six months when I weaned off. If you don't have side effects, it might be worth asking your doctor to stay on it longer while you work on diet and taper slowly when you are more normal on the BM front. It's not a systemic steroid so there usually isn't a huge risk.
Again best of luck and keep us posted.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Thank you all so much for your kind words of advice! My aunt is a nutritional therapist and I saw her on Sunday to helps think about diet. I think I have been in denial about it, hoping for the steroids to work their magic. Alas that doesn't seem to be enough! I'm starting an elimination diet and will see how I go on that.
It's good to hear that I'm not the only person under 50 that's going through this.. I wondered if I was ageing prematurely!!
Innes
It's good to hear that I'm not the only person under 50 that's going through this.. I wondered if I was ageing prematurely!!
Innes
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JamesEcuador
- Adélie Penguin
- Posts: 54
- Joined: Tue May 13, 2014 6:59 pm
I'm was found to have LC at 34. Not young really but still younger when compared to what the "norm" is but like Tex says, it sounds like the norm is a load of rubbish anyway.
I went GF, SF, DF and EF about 3 months ago but was still experiencing very loose stools. Then about two weeks after advice I received here cut out Listerine mouthwash (suspected gluten cross contaminant) and have had more regular BMs since. I still have other "classic" MC symptom's but I do think its a start and goes to show how important it us for us to double check EVERYTHING and not just your diet.
I went GF, SF, DF and EF about 3 months ago but was still experiencing very loose stools. Then about two weeks after advice I received here cut out Listerine mouthwash (suspected gluten cross contaminant) and have had more regular BMs since. I still have other "classic" MC symptom's but I do think its a start and goes to show how important it us for us to double check EVERYTHING and not just your diet.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Innes,
Welcome to the group, sorry you have MC and had to find us.
We have many members of all ages, there are a couple of people in 20's, 30's that are UK based.
I had digestion issues my whole life, the MC stage started in my mid 30's.
You have been given great advice thus far.
I will encourage you to read the posts/topics for new people, and the success stories.
You are young, if you make the necessary changes and get good healing underway you can live a healthy, happy 60 years!!!
The longer someone has inflammation, symptoms, the harder it is to heal, and the more likely other health issues will also start, and as time goes on, be chronic.
Take care
Welcome to the group, sorry you have MC and had to find us.
We have many members of all ages, there are a couple of people in 20's, 30's that are UK based.
I had digestion issues my whole life, the MC stage started in my mid 30's.
You have been given great advice thus far.
I will encourage you to read the posts/topics for new people, and the success stories.
You are young, if you make the necessary changes and get good healing underway you can live a healthy, happy 60 years!!!
The longer someone has inflammation, symptoms, the harder it is to heal, and the more likely other health issues will also start, and as time goes on, be chronic.
Take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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seeljanerun
- Adélie Penguin
- Posts: 73
- Joined: Wed Aug 14, 2013 11:33 am
I have had chronic diarrhea since I was 18, but wasn't diagnosed until age 22; I am 25 now, still am trying to achieve remission
I know that sounds doom and gloom, but I think my case is particularly involved - budesonide did nothing for me, even while on restricted diet, and I am still trying to figure out what foods are safe for me.
There is a lot of good advice on these boards and everyone here is friendly and helpful - welcome!
I know that sounds doom and gloom, but I think my case is particularly involved - budesonide did nothing for me, even while on restricted diet, and I am still trying to figure out what foods are safe for me.
There is a lot of good advice on these boards and everyone here is friendly and helpful - welcome!
Jane