Hello everyone,
I'm new to this site and I'd like to introduce myself.
I'm very happy that I have found a message board like this. So far I have been alone with my problems, doctors unfortunately weren't any big help. So I'm going to share my story in some quick sentences.
I hope to find some positive feedback around here. Right now I feel rather scared about how my life is going to change, if I'm really on the right track and all the dietary restrictions.
I'm 35 and female, living in Germany. I'm married and had a child about a year ago.
My digestion troubles started about 10 years ago. Since then they have gotten gradually worse. Over the years I had to undergo quite a few colonoscopies, but never with any results. Only in July 2018 a colonoscopy confirmed the diagnosis: Lymphocytic Colitis. I don't know why just this colonoscopy was "successful" in finding something. I assume it was because this was the only colonoscopy where they took 12 tissue samples. During all the other colonoscopies they only took 4.
In the first few weeks I was actually happy about the diagnosis. Living with digestion problems for over 10 years, not knowing why and not finding real help was very tough. I had many possible diagnoses thrown at me. Each time I was hoping: This is it, this will help. But nothing really changed. I kept looking, trying different diets, consulting different doctors. Let's just say it was a long ride till I found my way here.
Over the last 3 years I have stopped eating any dairy products because I had figured out that my digestion does a lot better without them. I had also eliminated some spices like Curcuma, Chili or Safran. Also stress seems to be a very strong trigger for me. Still I have felt there must be something else I don't tolerate.
I have come to learn that sugar and artificial sugars are also bad for me. So far I haven't completely managed to rid my diet of any sugars. Sometimes, after a long, hard day I even find myself eating some milk chocolate, well knowing that it's going to mess up my digestion.
Speaking of which: I know that a lot of you have watery, maybe even explosive D. In my case it's rather loose stool, with undigested food, gas and stomach cramps. Sometimes I have to go 3 times a day, sometimes 5 times. I can always make it to the restroom in time. Gladly never had any accidents so far. A lot of doctors over here share the opinion that if you don't have watery D, you don't have LC. This really confuses me.
Since July I have been treated with Budenoside (Budenofalk) 3 x 3mg a day. It almost immediately eliminated all my problems. Almost perfect stool, no cramps, bloating or gas. Unfortunately I have just caught a cold and I can't seem to get rid of it for the last 2 weeks. This shows me that I have to wean Budenoside as soon as possible.
Which brings me to my diet. I will have to be more strict about what I eat. Also I still have to figure out if I'm sensitive to gluten (blood tests negative but I know that doesn't mean much). I can only say that I really, really hope that I'm not gluten sensitive. The prospect of having to be dairy and gluten free scares me so much. I can't stop wondering how to organize my life if I have to be on such a strict diet. How can I, for example, manage at work? What about traveling? So far traveling and watching out for dairy was stressful but manageable. But dairy and gluten seems impossible even if I only travel in Germany. Or what if I have to go to the hospital, they can't cook a gluten and dairy free meal just for me, or can they?!
Another thing that makes me wonder is the probably unavoidable weight loss. I'm already a thin person (5'2 and 116 lbs) and I can't afford to loose a lot of weight. How did you all manage to not loose too much weight? Especially during the first phase where you basically eat rice and bananas?
One, in my point of view, curious aspect of my digestion problems is, that whenever I eat something bad, like dairy, I get a bad rash on my chin, like psoriasis or rosacea (Needless to say that no dermatologist could help). This rash shows up about 2 days after I have been exposed to bad food. And then it stays for a while (I guess it stays as long as my bowel is in a bad condition.). This is like a radar for me, if some food was really bad for me, not only my stool will show but also my chin. Is this common about LC?
I have still so many questions but I will stop here for now.
I'm happy I found you. I really need a place where I can share my questions and experiences with people that are having the same troubles. I have been feeling very down for the last few days because I have come to realize what this diagnosis actually means for me and my little family. I'm scared of malnutrition and slowly fading and loosing all my strength.
Thank you all for reading. Looking forward to hear from you! :)
Kiddo
Recently diagnosed and very confused
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello again,
Your perceptions are correct — MC is easy to miss if not enough biopsies are taken (or they are taken from the wrong places)
The diet soon becomes second nature and it will be much easier to follow after you get used to it. Eating out is risky. We learn to cook pure foods from "scratch", read labels, and avoid gluten 100 %. Most people don't recognize MC, but if you tell them that you have celiac disease, you can maintain a clean diet, including hospitals (at least that's true in the U.S.). You will probably need to take your own food if you do any air travel, but cruise lines have excellent chefs, and they can accommodate any diet if you just inform them a couple of weeks weeks before the cruise. Upscale restaurants do a good job of catering to special diets also, but most other restaurants are risky.
Psoriasis and other skin issues are common with MC patients. They are caused by either gluten or dairy, or both (in some cases). They will resolve as you perfect your diet and stay on it. Many of us lose a lot of weight when our MC is active (because of the malabsorption problem caused by poor digestion when the gut is inflamed). As you control your symptoms with the diet, your digestion will improve and you will be able to start gaining weight again.
I hope this helps.
Tex
Your perceptions are correct — MC is easy to miss if not enough biopsies are taken (or they are taken from the wrong places)
Doctors don't understand the disease very well. Some of us (including me) have alternating symptoms that go from diarrhea to constipation, in a two or three-week cycle, while some of us have constipation only, and a few of us even have normal bowel movements.Kiddo wrote:A lot of doctors over here share the opinion that if you don't have watery D, you don't have LC. This really confuses me.
It's common to crave chocolate because we are all magnesium deficient (the disease cause magnesium and vitamin D deficiency, and this weakens our immune system), and chocolate contains a lot of magnesium.Kiddo wrote:Sometimes, after a long, hard day I even find myself eating some milk chocolate, well knowing that it's going to mess up my digestion.
I'm sorry to inform you that we are virtually all sensitive to gluten — it's what causes the leaky gut, which causes all the other food sensitivities. There is only one lab in the world that can reliably detect gluten antibodies in stool, and that is EnteroLab, in Dallas, Texas. All other tests are a waste or time and money when we are trying to track down food sensitivities.Kiddo wrote:Which brings me to my diet. I will have to be more strict about what I eat. Also I still have to figure out if I'm sensitive to gluten (blood tests negative but I know that doesn't mean much). I can only say that I really, really hope that I'm not gluten sensitive. The prospect of having to be dairy and gluten free scares me so much. I can't stop wondering how to organize my life if I have to be on such a strict diet. How can I, for example, manage at work? What about traveling? So far traveling and watching out for dairy was stressful but manageable. But dairy and gluten seems impossible even if I only travel in Germany. Or what if I have to go to the hospital, they can't cook a gluten and dairy free meal just for me, or can they?!
The diet soon becomes second nature and it will be much easier to follow after you get used to it. Eating out is risky. We learn to cook pure foods from "scratch", read labels, and avoid gluten 100 %. Most people don't recognize MC, but if you tell them that you have celiac disease, you can maintain a clean diet, including hospitals (at least that's true in the U.S.). You will probably need to take your own food if you do any air travel, but cruise lines have excellent chefs, and they can accommodate any diet if you just inform them a couple of weeks weeks before the cruise. Upscale restaurants do a good job of catering to special diets also, but most other restaurants are risky.
Psoriasis and other skin issues are common with MC patients. They are caused by either gluten or dairy, or both (in some cases). They will resolve as you perfect your diet and stay on it. Many of us lose a lot of weight when our MC is active (because of the malabsorption problem caused by poor digestion when the gut is inflamed). As you control your symptoms with the diet, your digestion will improve and you will be able to start gaining weight again.
I hope this helps.
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 Tex,
thanks again for your reply. ;)
So if I understand correctly, watery D isn't a must when it comes to LC?
Yes, I have already figured that I will need to somehow check my Magnesium and Vitamine D3 Levels. Do you have any recommendations on supplements that work best for people with MC?
I have also read with great interest about EnteroLab. I'm fascinated by the possibilities this lab offers. I would take a few tests there immediately but sadly I live too far away. You don't happen to know by any chance if there is a similar lab in Europe or Germany?
I believe you when you say that the diet becomes second nature. I've experienced it with dairy. Today I know exactly which products work and which don't. But I just can't imagine ever beeing able to eat at a restaurant that can cook gluten AND dairy free. :( It's also hard to imagine how traveling would work. I guess I have to grow into it and give it some time. Unfortunately im impatient.
In good hospitals over here they will consider a gluten free diet. But as far as i know they can't consider a gluten AND dairy free diet. This is exactly what frightens me. I can imagine that somehow I would get through when it was "only" gluten (or "only" dairy). But both combined make it, as far as I can see it, impossible when it comes to hospitals, traveling, restaurants.
Dairy has always caused me strong symptoms, I can't say that about gluten (I did an elimination diet once). As far as I remember I didn't see any difference.
The weight loss frightens me. My margin is small, if I loose 10 kg I'm in serious trouble. I try not to think about it too much right now. I will see what happens if it comes to the point.
Btw. is fat also a problem for people with MC? I can not eat too greasy food at once (like a big (homemade) Hamburger, with fries or chicken fingers). It works better for me if I split up the meal.
I also have a question about medicine: Has anyone every tried Mesalazin? My doc mentioned it as an alternative to Budesonide.
Thank you so much for you time and for helping me out! :)
Kiddo
thanks again for your reply. ;)
So if I understand correctly, watery D isn't a must when it comes to LC?
Yes, I have already figured that I will need to somehow check my Magnesium and Vitamine D3 Levels. Do you have any recommendations on supplements that work best for people with MC?
I have also read with great interest about EnteroLab. I'm fascinated by the possibilities this lab offers. I would take a few tests there immediately but sadly I live too far away. You don't happen to know by any chance if there is a similar lab in Europe or Germany?
I believe you when you say that the diet becomes second nature. I've experienced it with dairy. Today I know exactly which products work and which don't. But I just can't imagine ever beeing able to eat at a restaurant that can cook gluten AND dairy free. :( It's also hard to imagine how traveling would work. I guess I have to grow into it and give it some time. Unfortunately im impatient.
In good hospitals over here they will consider a gluten free diet. But as far as i know they can't consider a gluten AND dairy free diet. This is exactly what frightens me. I can imagine that somehow I would get through when it was "only" gluten (or "only" dairy). But both combined make it, as far as I can see it, impossible when it comes to hospitals, traveling, restaurants.
Dairy has always caused me strong symptoms, I can't say that about gluten (I did an elimination diet once). As far as I remember I didn't see any difference.
The weight loss frightens me. My margin is small, if I loose 10 kg I'm in serious trouble. I try not to think about it too much right now. I will see what happens if it comes to the point.
Btw. is fat also a problem for people with MC? I can not eat too greasy food at once (like a big (homemade) Hamburger, with fries or chicken fingers). It works better for me if I split up the meal.
I also have a question about medicine: Has anyone every tried Mesalazin? My doc mentioned it as an alternative to Budesonide.
Thank you so much for you time and for helping me out! :)
Kiddo
There is no other lab in the world that can provide accurate and reliable test results for the type of sensitivities we have with MC. But you can send stool samples to EnteroLab from anywhere in the world by freezing them and sending them by overnight express. They will send you a collection kit with shipping instructions if you order some tests. We even have one member who sent his sample from Hong Kong.
But as I said, budesonide slowly suppresses the immune system so that eventually (after 5 or 6 months for some people, or a year for others) the immune system may not be able to produce normal amounts of IgA antibodies, so the tests may begin to lose accuracy and reliability for many foods. Also, if you have stopped eating certain foods, the immune system will eventually (after a few months or so) stop producing antibodies against them, so the EnteroLab tests may not be able to detect them (except for gluten — the lab can detect anti-gliadin antibodies for at least two years after you have stopped eating gluten.
It's not impossible that you might not be gluten-sensitive, but that would be very rare. And if you are gluten-sensitive, and you don't avoid it 100%, you will never by able to reach remission by diet changes.
When traveling, most of us take our own food. It's too risky not to do so, especially air travel.
Yes fat malabsorption is a problem with MC, just as it is with celiac disease. We have to limit fats to some extent when recovering, but we can tolerate small to moderate amounts of healthy fats such as olive oil and coconut oil. When the small intestine is inflamed, (as it is with MC), we lose the ability to produce normal amounts of the various enzymes needed to digest carbohydrates. This lasts until the inflammation is brought under control, and it is what causes the poor digestion when the disease is active. So eating smaller meals (more frequently) will help digestion and nutrient absorption. It is almost impossible for many of us to gain weight before we have the disease under control, because we can't digest our food well enough to be able to absorb enough of the nutrients in it.
Yes, many members here have used mesalazine (also called mesalamine). It's an anti-inflammatory medication used for treating inflammatory bowel diseases (IBDs). It takes longer to work, and it is not as effective as Budesonide, but it is not a steroid medication, so some people use it for that reason. It doesn't have most of the side effects of corticosteroids, but for many people, it does cause thinning of hair.
I hope this adequately addresses most of your questions.
Tex
But as I said, budesonide slowly suppresses the immune system so that eventually (after 5 or 6 months for some people, or a year for others) the immune system may not be able to produce normal amounts of IgA antibodies, so the tests may begin to lose accuracy and reliability for many foods. Also, if you have stopped eating certain foods, the immune system will eventually (after a few months or so) stop producing antibodies against them, so the EnteroLab tests may not be able to detect them (except for gluten — the lab can detect anti-gliadin antibodies for at least two years after you have stopped eating gluten.
It's not impossible that you might not be gluten-sensitive, but that would be very rare. And if you are gluten-sensitive, and you don't avoid it 100%, you will never by able to reach remission by diet changes.
When traveling, most of us take our own food. It's too risky not to do so, especially air travel.
Yes fat malabsorption is a problem with MC, just as it is with celiac disease. We have to limit fats to some extent when recovering, but we can tolerate small to moderate amounts of healthy fats such as olive oil and coconut oil. When the small intestine is inflamed, (as it is with MC), we lose the ability to produce normal amounts of the various enzymes needed to digest carbohydrates. This lasts until the inflammation is brought under control, and it is what causes the poor digestion when the disease is active. So eating smaller meals (more frequently) will help digestion and nutrient absorption. It is almost impossible for many of us to gain weight before we have the disease under control, because we can't digest our food well enough to be able to absorb enough of the nutrients in it.
Yes, many members here have used mesalazine (also called mesalamine). It's an anti-inflammatory medication used for treating inflammatory bowel diseases (IBDs). It takes longer to work, and it is not as effective as Budesonide, but it is not a steroid medication, so some people use it for that reason. It doesn't have most of the side effects of corticosteroids, but for many people, it does cause thinning of hair.
I hope this adequately addresses most of your questions.
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.