New here - my Story
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Louis and 
You have come to the right place! Actually, you are an excellent story-teller..... and I was fascinated by your account of your health issues. It's sad that your problems started when you were so young.....that had to be incredibly difficult.
I don't have much time to write right now, but I will try to answer your major questions.
Yes, as you have discovered, the key to putting MC in remission is diet. The Enterolab tests would be a good place to start. (The 23and ME tests are not necessary at this point). Enterolab tests would provide information more quickly than an elimination diet. A bland diet is best - while you wait for Enterolab results, try to find a few foods that you think you can tolerate (like chicken, sweet potato, well-cooked squash or carrots, and applesauce initially. I know you are worried about getting enough calories and nutrients, but, for now, you probably aren't absorbing them well anyway - that will improve as the gut heals. Most but not all can tolerate rice, so you might try that too. Avoid fiber like the plague - no salads, legumes, pulses (lentils!), uncooked veggies/fruits, nuts/seeds. Many also need to avoid acid foods like citrus initially. Don't worry.....once healing occurs, many foods can be added back into the diet Also, medication can be helpful (budenoside) but must be done in conjunction with diet. If not, the MC will return soon after the medication is stopped. The biggest food sensitivities are gluten, dairy, and soy, but as you can see under my avatar, some of us have many additional sensitivities. Most of us have negative celiac tests like you did - because our problem is called "non-celiac gluten sensitivity". Most docs know little about this....or about the connection of MC to food.
Mast cells/histamine are an issue for many of us. You may want to check out the high-histamine foods and try avoiding them. Also, many here get relief from antihistamines. Vitamin D3 is good - you want to keep your blood level between 60-90 if possible. At present I would avoid probiotics, fish oil (oil can promote diarrhea), and the digestive enzymes (unless you have had actual tests showing that you are deficient in them). A rule of thumb is to take as few supplements as possible initially - and for any you do take, contact the manufacturer to ask about the inert ingredients, like gluten, dairy, soy, etc.
Patience is important because healing can take months to years. The good news is that you should begin fairly quickly to see signs of healing, like less frequency, urgency, bloating, muscle and joint aches and pains. But it took me 9 months to see a formed B.M. Also, stress reduction is critical, since as you know, stress plays a major role in MC: regular exercise, yoga, meditation....whatever works for you.
The best news is that, as you can see from this website, there is a light at the end of the tunnel. Most here achieve remission (although it is always possible to have a flare if we experience stress or eat one of our no-no foods unknowingly). Many have found loperamide helpful to help control the diarrhea for work/social situations.
Hang in there - you WILL get better. And welcome once again. Sorry I have to run off, but I will be happy to answer any additional questions or to provide a sympathetic ear if you feel like ranting and raving about MC. The best feature of this site is that we all understand exactly where you are coming from in dealing with this embarrassing, inconvenient, and uncomfortable disease. There is no question that you can't ask or topic you can't raise.
Polly
You have come to the right place! Actually, you are an excellent story-teller..... and I was fascinated by your account of your health issues. It's sad that your problems started when you were so young.....that had to be incredibly difficult.
I don't have much time to write right now, but I will try to answer your major questions.
Yes, as you have discovered, the key to putting MC in remission is diet. The Enterolab tests would be a good place to start. (The 23and ME tests are not necessary at this point). Enterolab tests would provide information more quickly than an elimination diet. A bland diet is best - while you wait for Enterolab results, try to find a few foods that you think you can tolerate (like chicken, sweet potato, well-cooked squash or carrots, and applesauce initially. I know you are worried about getting enough calories and nutrients, but, for now, you probably aren't absorbing them well anyway - that will improve as the gut heals. Most but not all can tolerate rice, so you might try that too. Avoid fiber like the plague - no salads, legumes, pulses (lentils!), uncooked veggies/fruits, nuts/seeds. Many also need to avoid acid foods like citrus initially. Don't worry.....once healing occurs, many foods can be added back into the diet Also, medication can be helpful (budenoside) but must be done in conjunction with diet. If not, the MC will return soon after the medication is stopped. The biggest food sensitivities are gluten, dairy, and soy, but as you can see under my avatar, some of us have many additional sensitivities. Most of us have negative celiac tests like you did - because our problem is called "non-celiac gluten sensitivity". Most docs know little about this....or about the connection of MC to food.
Mast cells/histamine are an issue for many of us. You may want to check out the high-histamine foods and try avoiding them. Also, many here get relief from antihistamines. Vitamin D3 is good - you want to keep your blood level between 60-90 if possible. At present I would avoid probiotics, fish oil (oil can promote diarrhea), and the digestive enzymes (unless you have had actual tests showing that you are deficient in them). A rule of thumb is to take as few supplements as possible initially - and for any you do take, contact the manufacturer to ask about the inert ingredients, like gluten, dairy, soy, etc.
Patience is important because healing can take months to years. The good news is that you should begin fairly quickly to see signs of healing, like less frequency, urgency, bloating, muscle and joint aches and pains. But it took me 9 months to see a formed B.M. Also, stress reduction is critical, since as you know, stress plays a major role in MC: regular exercise, yoga, meditation....whatever works for you.
The best news is that, as you can see from this website, there is a light at the end of the tunnel. Most here achieve remission (although it is always possible to have a flare if we experience stress or eat one of our no-no foods unknowingly). Many have found loperamide helpful to help control the diarrhea for work/social situations.
Hang in there - you WILL get better. And welcome once again. Sorry I have to run off, but I will be happy to answer any additional questions or to provide a sympathetic ear if you feel like ranting and raving about MC. The best feature of this site is that we all understand exactly where you are coming from in dealing with this embarrassing, inconvenient, and uncomfortable disease. There is no question that you can't ask or topic you can't raise.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hello Louis,
Welcome to our internet family. Your English is fine. It is a 1,000 times better than my German will ever be. And I agree with Polly that you did an excellent job of writing your story. If I understand your story correctly, this describes your current status:
The foods that Polly suggested are what I ate when I was recovering. A few people here react to chicken, but no one (at least no one of whom I am aware) reacts to turkey or lamb. So you might keep those 2 meats in mind for future reference, especially if an EnteroLab test should show that you are sensitive to chicken.
You are wise beyond your years, and you are correct that you no longer have to face this disease alone, because you are part of our family here now, and we will help in any way we can. I can remember when I first became sick and suffered for years, with no relief. Those years were the loneliest of my life, and they were the only time in my life that I have felt completely helpless and hopeless. Being able to ask questions and share ideas with others who understand and have experienced the same problems can be priceless.
Again, welcome to the discussion board, and I hope that you will soon have your health back.
Tex
Welcome to our internet family. Your English is fine. It is a 1,000 times better than my German will ever be. And I agree with Polly that you did an excellent job of writing your story. If I understand your story correctly, this describes your current status:
You are definitely making progress, and you've obviously learned a lot about managing your health with your diet. You may be closer than you think, because this disease is so unforgiving that we have to do everything right in order to control it. So perhaps your diet is getting close, if you are following a modified paleo diet. I am guessing that if you are following a mostly paleo diet that means that you are avoiding all dairy products, including yogurt, cheese, whey protein, etc. If not, that might be the cause of the return of psoriasis. But as Polly suggested, the EnteroLab test results will answer the questions about which foods are causing problems.Louis wrote:I moved from vegan to almost paleo, and Im starting to get some health back again, my thrombocytes are back up to 160k right now without any medication and I gained 10kg weight.
..but Im really not sure what food I can safely eat and what not. Sadly my psoriasis is slowly coming back and getting worse, and I'm not sure if this is a good sign. Atleast its fine on toilet right now and my weight is almost normal. So far, this is my acutal situation.
The foods that Polly suggested are what I ate when I was recovering. A few people here react to chicken, but no one (at least no one of whom I am aware) reacts to turkey or lamb. So you might keep those 2 meats in mind for future reference, especially if an EnteroLab test should show that you are sensitive to chicken.
Louis wrote:But I somehow want to avoid more mistakes, but im not sure if I can handle this situation really on my own. From what I learned over the years, and what I read here, this seems the right place to be, if you have this disease. So, I'm happy I found this forum.
You are wise beyond your years, and you are correct that you no longer have to face this disease alone, because you are part of our family here now, and we will help in any way we can. I can remember when I first became sick and suffered for years, with no relief. Those years were the loneliest of my life, and they were the only time in my life that I have felt completely helpless and hopeless. Being able to ask questions and share ideas with others who understand and have experienced the same problems can be priceless.
Again, welcome to the discussion board, and I hope that you will soon have your health back.
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.
Dear Louis,
I'm so sorry that you have gone through so much, healthwise, given your young age.
I will only comment on your psoriasis issue. I had psoriasis from 1973-2013. This was the only sign that my body reacted to something, but the doctors back then just shrugged their heads, and told me to get a membership in the local psoriasis forum...
As soon as I omitted gluten and casein in 2013 (cow's milk, cheese, youghurt +++) from my diet, my psoriasis just disappeared. I still had explosive diarrea, and it has taken - and still takes - a lot of monitoring what I eat, but it is possible to get remission. You have to be clever in reading labels on each product you buy. The best thing you can do is to make your own food, from scratch.
Make sure that your D3-level is above the lower range, and make sure to take a magnesium supplememt (pills can bring you to diarrea, but try Epsom-salt baths, and magnesium oil spray on the body).
I think you are lucky to have found this forum. It literally has saved my life. I'm still struggling to gain weight, but I'm sure I will get there. Given time.
It's a long and bumpy journey, but you will get better if you follow all the advices on this board.
Lilia
I'm so sorry that you have gone through so much, healthwise, given your young age.
I will only comment on your psoriasis issue. I had psoriasis from 1973-2013. This was the only sign that my body reacted to something, but the doctors back then just shrugged their heads, and told me to get a membership in the local psoriasis forum...
As soon as I omitted gluten and casein in 2013 (cow's milk, cheese, youghurt +++) from my diet, my psoriasis just disappeared. I still had explosive diarrea, and it has taken - and still takes - a lot of monitoring what I eat, but it is possible to get remission. You have to be clever in reading labels on each product you buy. The best thing you can do is to make your own food, from scratch.
Make sure that your D3-level is above the lower range, and make sure to take a magnesium supplememt (pills can bring you to diarrea, but try Epsom-salt baths, and magnesium oil spray on the body).
I think you are lucky to have found this forum. It literally has saved my life. I'm still struggling to gain weight, but I'm sure I will get there. Given time.
It's a long and bumpy journey, but you will get better if you follow all the advices on this board.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Welcome Louis. You are on the right track and like Polly said, simple foods are best right now. I ate all animal freshly cooked proteins, sweet potatoes and carrots, white rice, Chex cereal with almond milk, and Eggs ( but some of us can't have them). I avoided all gluten, dairy and soy ( legumes, beans, and peanuts are related to soy). I only use coconut oil and olive oil and only drink water and herbal tea. I was Dx over three years ago and today I have been able to add many things back into my diet ( like potatoes, salads, raw veggies, white and black beans, popcorn…etc.) and have perfect BMs. I do, however take OTC antihistamines ( and vitamins D and B). We all are a bit different, but I am sure you will figure it out. The Enterolab tests can definitely help you future it out faster.
Good luck
Leah
Good luck
Leah
Herzlich willkommen, Louis!
Did you read the book Tex wrote about Microscopic Colitis? It has really helped me understand things. I read it right after being diagnosed and have gone back multiple times since to looks things up. I bought mine on iBooks, but Amazon.de carries it as well, both the Kindle edition and the Taschenbuch edition:
http://www.amazon.de/Microscopic-Coliti ... ic+colitis
Gute Besserung!
Patricia
Did you read the book Tex wrote about Microscopic Colitis? It has really helped me understand things. I read it right after being diagnosed and have gone back multiple times since to looks things up. I bought mine on iBooks, but Amazon.de carries it as well, both the Kindle edition and the Taschenbuch edition:
http://www.amazon.de/Microscopic-Coliti ... ic+colitis
Gute Besserung!
Patricia
Welcome Louis, you've come to the right place.
I always want to say 'It works if you work it' but that motto is used by another group (also may mean something totally different when translated)
I always want to say 'It works if you work it' but that motto is used by another group (also may mean something totally different when translated)
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Welcome, Louis, I am so glad you're with us now!
I think what you're doing, paleo, (grain free) is safest. Cooked vegetables over raw if you're still experiencing diarrhea, and limit fruits if you have diarrhea or pain (the sugars can cause bloating, problems)
Like Tex said, lamb and turkey are some of the safer meats. Wild game is a good bet, too.
If you can do Enterolab testing, it can help you identify safe grains, meats and whether or not you can eat eggs.
All the best to you in your journey and look forward to your contribution here,
Nancy
I think what you're doing, paleo, (grain free) is safest. Cooked vegetables over raw if you're still experiencing diarrhea, and limit fruits if you have diarrhea or pain (the sugars can cause bloating, problems)
Like Tex said, lamb and turkey are some of the safer meats. Wild game is a good bet, too.
If you can do Enterolab testing, it can help you identify safe grains, meats and whether or not you can eat eggs.
All the best to you in your journey and look forward to your contribution here,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi Louis,
Your English is just fine and no need to feel like you have to keep the story short. I find that sharing also helps heal and sometimes it's theraputic to get thoughts out of your head, especially with those who understand. I give you credit for going GF at such a young age- it can be a challenge. Be patient, it can take time but is worth the effort!
Your English is just fine and no need to feel like you have to keep the story short. I find that sharing also helps heal and sometimes it's theraputic to get thoughts out of your head, especially with those who understand. I give you credit for going GF at such a young age- it can be a challenge. Be patient, it can take time but is worth the effort!
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi, Louis. I don't have anything to add except welcome to the group. I achieved remission through diet alone. I have not had to take any medication after 8 weeks of Pepto Bismol which was prescribed by my G.I. This group is an awesome resource and I am so glad that I found it. Good luck on your journey and don't hesitate to ask for advice.
Marcia
Marcia
Yes, definitely. I can eat dairy products with no apparent digestive symptoms. But if I eat them I develop osteoarthritis. For example my finger joints will swell and become very painful, and my fingers will grow crooked. As long as I avoid casein my fingers are fine. And an Enterolab test shows that I produce antibodies to casein (the main protein in milk).Louis wrote:Do you think that we with microscopic colitis can eat something without bloatings or diarrhea or other direct reactions but its still damaging for our body?
The most useful EnteroLab tests for us is the combination of panels A1 and C1, and the price for the combination is discounted. However, if you cannot afford to spend that much money right now, the A1 Panel provides the basic tests for gluten, casein, soy, and egg, which are the 4 most common food problems for most of us. If you can afford to include the C1 Panel also, it includes tests for chicken, beef, pork, tuna, corn, rice, oats, almond, walnut, cashew, and white potato. The test results will make selecting safe foods for your diet much easier.
Some of us can eat fermented foods without any problems. I was able to eat sauerkraut while I was recovering, for example. But now I have to be more careful. The problem is that fermented foods contain the highest amounts of histamine, so they can cause serious problems for someone who has mast cell issues.
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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louis
This is very interesting. Ive ordered the enterolab test now, as im very curious about the possible results. Finding a way to ship to the US in 1-2 days will be a challenge tho.tex wrote:Yes, definitely. I can eat dairy products with no apparent digestive symptoms. But if I eat them I develop osteoarthritis. For example my finger joints will swell and become very painful, and my fingers will grow crooked. As long as I avoid casein my fingers are fine. And an Enterolab test shows that I produce antibodies to casein (the main protein in milk). TexLouis wrote:Do you think that we with microscopic colitis can eat something without bloatings or diarrhea or other direct reactions but its still damaging for our body?
I had a look into the magnesium topic. Would this be a good oil to take/spray a few times a day? http://eu.iherb.com/Life-Flo-Health-Pur ... 7-ml/33840
My Vitamin D lvls are around 40, i guess 2000 iu daily should be fine?