Hi ,my name is Carlo I'm 38 and I'm from Italy and I excuse myself for my english that is not really perfect but I'll try to explain myself the best I can.My story start from the first decade of April 2013 when ,after a long period of stress and problems whit family and on work, I start to have a mucous and diarroea for a week.
My doc prescrives me rifaximin for 3 days and things seem to go better but after few days the things worsen again and I find a Gastro that prescrives me a lot of tests from blood to calprotectin . Everything comes back normal no abnormality and the calprotectin test is <15 so he gives me some antispasmodics and says that is IBS.
My "IBS" gives me so many problems that I do'nt give up and I ask to my GP to make a colonoscopy.
He makes the colonoscopy and he finds everything normal but he makes biopsies to see if I could have a microscopic colitis.
From the multiple biopsies emerge that there is an interstitial edema in all the withdrawn and a small infiltrate of lymphocytes.
He said that there was no evidence of a microscopic colitis but the usual medication for IBS do'nt work on me and I have tested a lot!
From the beginning of my problems my symptoms are slightly changed because I alternate periods that I have a kind of costipation whit mucous even going everyday,to periods that I have to wake up very soon in the morning because I have to go several times before going to work.
I have also discovered that my daughter of 6y has the celiac disease and she as the HLA DQ8R4 gene that has inherited by me.
During these 2 years I did'nt give up and I have made a lot of tests from the gastroscopy to exclude the celiac disease even if the tests on blood were negative to many others tests like repeating the calprotectin in other laboratories but all were negative even if a little from the first result.
I'd like to have an opinion from you .
Do you think that I should surrender to the diagnosis of IBS or I should find another gastro to have another colonoscopy?
I'm really sorry but I'm really frustrated because I have also a lot of hurt everyday and I'm strongly depressed...
undiagnosed but struggling...need help and comprension
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carlos1977
- Posts: 2
- Joined: Fri May 15, 2015 9:50 am
Hello Carlo,
Welcome to our Internet family. Your story is familiar to many of us. I also had alternating diarrhea and constipation back when I was reacting.
There are at least a dozen different types of microscopic colitis. Most doctors are only familiar with 2 or 3 of them. The treatment is the same for all of them.
Many patients are diagnosed with "IBS" when they actually have microscopic colitis. If the doctor fails to take biopsy samples during the exam, for example, the diagnosis will be "IBS". If the pathologist misinterprets the biopsy results, the diagnosis will be "IBS". It appears that's what happened in your case.
In my opinion there is little point in searching for another doctor, because you are not likely to be able to locate one who recognizes paucicellular lymphocytic colitis (PLC) when he sees it, and most of them do not know how to treat LC or PLC, anyway. The correct way is to avoid the foods in your diet that are causing your immune system to produce antibodies that cause the inflammation. That is how the members of this discussion board eliminate our symptoms. Most GI specialists still insist that diet has nothing to do with treating MC. A few of them are beginning to learn the truth, but most of them are still behind the times, and they don't understand how to treat MC.
This disease is very depressing, until we learn how to control our symptoms. But you can get your life back, if you make the proper diet changes. It's like celiac disease, except that we are sensitive to other foods in addition to gluten. If we avoid those foods completely, our gut heals, and we are fine.
A negative celiac blood test means nothing for a patient who has LC (or PLC), because those tests do not detect the type of gluten sensitivity that occurs with this disease (non-celiac gluten sensitivity). Except for the few of us who also have celiac disease, virtually all of us here are sensitive to gluten, and we are at least as sensitive as the average celiac. We have to avoid even tiny traces of it if we want to avoid having symptoms. That applies to our other food sensitivities, also.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. Your story is familiar to many of us. I also had alternating diarrhea and constipation back when I was reacting.
I'm not a doctor, so I can't diagnose you, but it sounds as though you have paucicellular lymphocytic colitis, which is a less-common form of lymphocytic colitis. Most doctors are not even aware that it exists, so it's not surprising that your doctor did not recognize it. Here is a quote from a medical research article about it, and a link to the article:Carlo wrote:From the multiple biopsies emerge that there is an interstitial edema in all the withdrawn and a small infiltrate of lymphocytes.
Paucicellular and Asymptomatic Lymphocytic Colitis - Expanding the Clinicopathologic Spectrum of Lymphocytic ColitisWe found the clinicopathologic associations in patients with paucicellular LC were similar to those of patients with classic LC. This suggests that paucicellular LC should be included in the morphologic spectrum of LC.
There are at least a dozen different types of microscopic colitis. Most doctors are only familiar with 2 or 3 of them. The treatment is the same for all of them.
There is no such thing as "IBS". "IBS" always turns out to be either a misdiagnosis, or a failure to diagnose a disease that is in it's early stages. "IBS" is a symptom, not a disease, despite what doctors claim. GI specialists created the term "IBS" years ago, after they became embarrassed due to having to inform so many patients that they did not have the foggiest idea what was wrong with them. So they decided to tell them that they have "IBS", because it sounds so much more professional to tell a patient that they have "IBS", than to tell them, "I don't know what's wrong with you".Carlo wrote:Do you think that I should surrender to the diagnosis of IBS or I should find another gastro to have another colonoscopy?
Many patients are diagnosed with "IBS" when they actually have microscopic colitis. If the doctor fails to take biopsy samples during the exam, for example, the diagnosis will be "IBS". If the pathologist misinterprets the biopsy results, the diagnosis will be "IBS". It appears that's what happened in your case.
In my opinion there is little point in searching for another doctor, because you are not likely to be able to locate one who recognizes paucicellular lymphocytic colitis (PLC) when he sees it, and most of them do not know how to treat LC or PLC, anyway. The correct way is to avoid the foods in your diet that are causing your immune system to produce antibodies that cause the inflammation. That is how the members of this discussion board eliminate our symptoms. Most GI specialists still insist that diet has nothing to do with treating MC. A few of them are beginning to learn the truth, but most of them are still behind the times, and they don't understand how to treat MC.
This disease is very depressing, until we learn how to control our symptoms. But you can get your life back, if you make the proper diet changes. It's like celiac disease, except that we are sensitive to other foods in addition to gluten. If we avoid those foods completely, our gut heals, and we are fine.
A negative celiac blood test means nothing for a patient who has LC (or PLC), because those tests do not detect the type of gluten sensitivity that occurs with this disease (non-celiac gluten sensitivity). Except for the few of us who also have celiac disease, virtually all of us here are sensitive to gluten, and we are at least as sensitive as the average celiac. We have to avoid even tiny traces of it if we want to avoid having symptoms. That applies to our other food sensitivities, also.
Again, welcome aboard, and please feel free to ask anything.
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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carlos1977
- Posts: 2
- Joined: Fri May 15, 2015 9:50 am
Thank you Tex I'll try to change my diet but I do'nt know how to do it .
I have tryed to eliminate gluten because at home me and my wife had started to avoid it from the diagnosis of my daughter 6 month ago but my symptoms are always the same .
I'd like to start an elimination diet but I have no idea ho w to do it...
I have also tryed to take mesalamine for 3 weeks but I felt even worse.
I have tryed to eliminate gluten because at home me and my wife had started to avoid it from the diagnosis of my daughter 6 month ago but my symptoms are always the same .
I'd like to start an elimination diet but I have no idea ho w to do it...
I have also tryed to take mesalamine for 3 weeks but I felt even worse.
Carlo,
Here is some information on following an elimination diet:
Elimination Diet
If you don't begin to see some improvements after a few weeks (or if you feel worse), stop eating chicken and substitute turkey or lamb instead.
The problem with mesalamine is that it is made from a derivative of salicylic acid, and a form of salicylic acid is the basic ingredient in nonsteroidal anti-inflammatory drugs (NSAIDS). NSAIDS are known to cause many cases of microscopic colitis. Because of that, many patients who have MC (LC, CC, or PLC) react to mesalamine and it makes us worse, rather than better.
Tex
Here is some information on following an elimination diet:
Elimination Diet
If you don't begin to see some improvements after a few weeks (or if you feel worse), stop eating chicken and substitute turkey or lamb instead.
The problem with mesalamine is that it is made from a derivative of salicylic acid, and a form of salicylic acid is the basic ingredient in nonsteroidal anti-inflammatory drugs (NSAIDS). NSAIDS are known to cause many cases of microscopic colitis. Because of that, many patients who have MC (LC, CC, or PLC) react to mesalamine and it makes us worse, rather than better.
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.
Hi Carlo and welcome!
You are at the right place to get your life back!
Like your daughter we have to be 100% gluten free. Very few of us test positive for celiac but in order to go into remission we have to be 100% gluten free---the same strict standards as your daughter. Since you've been struggling the last 6 months some additional things that should help follows:
We ARE ALL GOING TO BE A LITTLE DIFFERENT IN WHAT WE CAN EAT BUT THERE ARE SOME GENERAL SIMILARITIES.
Eliminate all dairy for a good long while including milk, yogurt, hard cheese, all cheese, and butter.
Eliminate all raw fruits and raw veggies. Avoid nuts for now. The exception is you might be ok with an avacado, a banana, and a little applesauce. Raw veggies and fruits are too difficult for us to digest and cause physical inflammation.
Eliminate anything acidic---tomato sauce, vinegar, red wine etc. I can eat/drink this stuff now but I am in remission.
Overcook all veggies. Things like squash and carrots are generally safe.
Olive oil and coconut oil are generally safe.
White potato, white rice and sweet potato are generally safe.
Eat a lot of protein. It takes a lot of protein to heal. We are better with simple food preparations.
You have mentioned prescription drugs several times. A lot of folks on the forum go into remission without drugs. (I wasn't one of them.) If you feel like you are really struggling and need help of a drug Entocort budesonide works for most of us. It does not heal us but helps with the symptoms while we work on adjusting our foods. Entocort is a steroid and has to be tapered off of. General time on Entocort is 4 or 5 months. Entocort without diet change equals high rate of relapse when getting off of Entocort. For some people Entocort can be tough to get off of.
Over the counter drugs that can help with symptoms are Pepto Bismol (bismuth) and immodium.
Tex has a book in English in the upper right hand corner is the info. It is a good resource.
I can eat a broad category of foods now but had to simplify things in order to heal.
Brandy
You are at the right place to get your life back!
Like your daughter we have to be 100% gluten free. Very few of us test positive for celiac but in order to go into remission we have to be 100% gluten free---the same strict standards as your daughter. Since you've been struggling the last 6 months some additional things that should help follows:
We ARE ALL GOING TO BE A LITTLE DIFFERENT IN WHAT WE CAN EAT BUT THERE ARE SOME GENERAL SIMILARITIES.
Eliminate all dairy for a good long while including milk, yogurt, hard cheese, all cheese, and butter.
Eliminate all raw fruits and raw veggies. Avoid nuts for now. The exception is you might be ok with an avacado, a banana, and a little applesauce. Raw veggies and fruits are too difficult for us to digest and cause physical inflammation.
Eliminate anything acidic---tomato sauce, vinegar, red wine etc. I can eat/drink this stuff now but I am in remission.
Overcook all veggies. Things like squash and carrots are generally safe.
Olive oil and coconut oil are generally safe.
White potato, white rice and sweet potato are generally safe.
Eat a lot of protein. It takes a lot of protein to heal. We are better with simple food preparations.
You have mentioned prescription drugs several times. A lot of folks on the forum go into remission without drugs. (I wasn't one of them.) If you feel like you are really struggling and need help of a drug Entocort budesonide works for most of us. It does not heal us but helps with the symptoms while we work on adjusting our foods. Entocort is a steroid and has to be tapered off of. General time on Entocort is 4 or 5 months. Entocort without diet change equals high rate of relapse when getting off of Entocort. For some people Entocort can be tough to get off of.
Over the counter drugs that can help with symptoms are Pepto Bismol (bismuth) and immodium.
Tex has a book in English in the upper right hand corner is the info. It is a good resource.
I can eat a broad category of foods now but had to simplify things in order to heal.
Brandy
Hi Carlo, everything Brandy and Tex said!
I am a newbie to the elimination diet and I recently had to restrict myself to a rather boring diet of fresh Turkey, steamed White Rice, plain Potato chips, canned peaches mashed with a dash of sugar and cinnamon and water or tea. I have eaten this regularly for about a week now, and for breakfast I have Rice Chex with Coconut milk or a gluten free pancake mix made by King Arthur I use pumpkin for an egg replacer. I will expand my diet at some point, I'm just trying to help my system reach a baseline.
I have so many restrictions (I took a blood test to get my food sensitivities results) I read labels like crazy No Soy, Egg, Dairy or Wheat. This seems to be a pretty constant way to look at things with this LC/MC way of life right now.
I may need to go on Entocort/Budesonide because my symptoms are better but motility is the same which keeps me from doing some things I want to do.
Good Luck, and you definitely came to the right place...this can an will get better!
Erica
I am a newbie to the elimination diet and I recently had to restrict myself to a rather boring diet of fresh Turkey, steamed White Rice, plain Potato chips, canned peaches mashed with a dash of sugar and cinnamon and water or tea. I have eaten this regularly for about a week now, and for breakfast I have Rice Chex with Coconut milk or a gluten free pancake mix made by King Arthur I use pumpkin for an egg replacer. I will expand my diet at some point, I'm just trying to help my system reach a baseline.
I have so many restrictions (I took a blood test to get my food sensitivities results) I read labels like crazy No Soy, Egg, Dairy or Wheat. This seems to be a pretty constant way to look at things with this LC/MC way of life right now.
I may need to go on Entocort/Budesonide because my symptoms are better but motility is the same which keeps me from doing some things I want to do.
Good Luck, and you definitely came to the right place...this can an will get better!
Erica