Hi everyone,
I have never posted before but feel that I know you all as I have benefitted from your advice for many years. Thank you. I am posting for the first time as I am completely lost and need help. I was first diagnosed with MC 10 years ago through colonoscopy biopsy, the report said "the biopsies have shown quite definite mild to moderate active chronic inflammation which would be consistent with microscopic colitis". My CRP was 113. As I did not respond well to medication the consultant then changed the diagnosis to IBS. At the time I had chronic constipation and stomach pains, B12 deficiency and back pains and general malaise. I had lost my appetite and significant weight over a 6 week period and was clearly ill. But I never had watery diarrhoea and have never had it. I was then left to cope on my own with no follow up.
I struggled for 5 years with 2 small kids and a lot of stress. I cut out wheat and dairy and coped as well as I could. I also had severe acid reflux and fatigue. On request I was once again referred to a gatroenterologist who, once again diagnosed IBS as I have chronic constipation not WD. He did no tests to confirm his diagnosis. I cried in the car driving home. I felt hopeless.
Fast forward 10 years... I have a very limited paleo diet which controls symptoms but is mentally draining. I have been a vegetarian then vegan since I was 4 and two years ago started eating meat and fish as I was getting sore patches over my body and through research realised that I had a problem with lectins. This is a very hard diet as I dislike the taste and texture of animal flesh but I am persevering thanks to the information on this website and other research. I then got blood in my stools and terrible stomach pains (I had relaxed my diet a lot and eaten out more than normal) and eventually this week, had my second colonoscopy 10 years later. I am waiting for the biopsy results but the colonoscopy was normal and so was the blood test. The consultant said that MC is often diagnosed when there is inflammation but is a "catch-all" general diagnosis when they don't know what is wrong!!!!! He thinks I have IBS!!!
So... what the hell do I believe? I am a hypochondriac? Do I have IBS and can stop worrying about inflammation and damage? Or do I have MC even though I have constipation and have never had WD? If the biopsies come back normal what do I think?
Thanks so much for your time. Very, very grateful.
Amy x
Is it MC or IBS???
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Amy,
Welcome. I'm, glad to see you finally posting. But I'm appalled by the poor quality of care you've been receiving for the last ten years. Ignorance of digestive system diseases and professional incompetence in general must be requirements in order to become certified as a gastroenterologist in England. I would be afraid to let the comedians that you have been consulting treat my dog (if I had a dog).
First off, a microscopic colitis diagnosis is never made by mistake — if you were diagnosed by biopsy, then you have microscopic colitis. Furthermore, once diagnosed, you will have microscopic colitis for the rest of your life — there is no cure (though the symptoms can be controlled with proper treatment).
There is a diagnostic procedure for MC, and if the test shows positive results, you definitely have MC. By contrast, "IBS" is not actually a disease and there is no test for "IBS". Gastroenterologists are supposed to be experts on digestive system diseases, so they would be very embarrassed to have to say, I don't have the slightest idea what's wrong with you to so many patients. So they "invented' a disease and decided to call it "IBS". Now, when they can't figure out what's wrong with a patient, they simply tell the patient that they have "IBS". How convenient for them. Most "IBS" patients have MC, but a few are in the early stages of some other digestive system disease such as Crohn's disease.
Many MC patients do not have diarrhea. Some actually have constipation. Some have normal bowel movements. Many physicians don't understand that. If your pathology report comes back normal (negative for MC) you should think you've been misdiagnosed again by a group of clowns pretending to be physicians.
Again, welcome aboard, and I hope your pathology report will be accurate.
Tex
Welcome. I'm, glad to see you finally posting. But I'm appalled by the poor quality of care you've been receiving for the last ten years. Ignorance of digestive system diseases and professional incompetence in general must be requirements in order to become certified as a gastroenterologist in England. I would be afraid to let the comedians that you have been consulting treat my dog (if I had a dog).
First off, a microscopic colitis diagnosis is never made by mistake — if you were diagnosed by biopsy, then you have microscopic colitis. Furthermore, once diagnosed, you will have microscopic colitis for the rest of your life — there is no cure (though the symptoms can be controlled with proper treatment).
There is a diagnostic procedure for MC, and if the test shows positive results, you definitely have MC. By contrast, "IBS" is not actually a disease and there is no test for "IBS". Gastroenterologists are supposed to be experts on digestive system diseases, so they would be very embarrassed to have to say, I don't have the slightest idea what's wrong with you to so many patients. So they "invented' a disease and decided to call it "IBS". Now, when they can't figure out what's wrong with a patient, they simply tell the patient that they have "IBS". How convenient for them. Most "IBS" patients have MC, but a few are in the early stages of some other digestive system disease such as Crohn's disease.
Many MC patients do not have diarrhea. Some actually have constipation. Some have normal bowel movements. Many physicians don't understand that. If your pathology report comes back normal (negative for MC) you should think you've been misdiagnosed again by a group of clowns pretending to be physicians.
Again, welcome aboard, and I hope your pathology report will be accurate.
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.
Amy,
What sort of symptoms do you have? Constipation is a symptom of chronic magnesium deficiency. I had a chronic magnesium deficiency all my life until about two and a half years ago, when I figured it out and solved a lot of my problems by correcting the deficiency.
Tex
What sort of symptoms do you have? Constipation is a symptom of chronic magnesium deficiency. I had a chronic magnesium deficiency all my life until about two and a half years ago, when I figured it out and solved a lot of my problems by correcting the deficiency.
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.
I have had IBS for many years...Now, MC for the past 10. diarrhea. No harsh drugs used. Am making very good progress using GcMAF ( Bravo Co-Op....dairy and non-dairy) Dr Ruggerio, MD..youtube. and Symbiotics Colostrum powder Plus ( 20 grams/day)amazon. Quercitin too. These are REAL HEALERS. Diet key too: Gluten, soy, dairy free.
Hi Tex,
Thanks so much for your prompt reply, you have made my day. Although I kinda knew what you just explained as I have read so many posts and have your book I really needed to have the reassurance of hearing it from you. I am not going mad!
I have been fobbed off and ridiculed by doctors here as I don't have diarrhoea so can't have anything serious!! My symptoms are stomach pain, joint and muscle pain, fatigue, constipation, bloating and poor appetite, fibro tender spots all over body and now heart palpitations. I totally believe I have a mag deficiency too and have recently been taking 600mg citrate a day which has helped with bowel movements and heart palpitations. I learnt about this from your experience, again I am so grateful. How much do you reckon I should supplement each day? I am also taking vit d3 as my levels are adequate but not great.
I am strict gf, df, and ef plus no raw veg and fruit and pretty much AI Paleo. My consultant said food has no effect on joint issues when I refused to eat gluten for celiac test as, amongst many symptoms, my joints would be very painful. Give me strength!
Thanks so much for your prompt reply, you have made my day. Although I kinda knew what you just explained as I have read so many posts and have your book I really needed to have the reassurance of hearing it from you. I am not going mad!
I have been fobbed off and ridiculed by doctors here as I don't have diarrhoea so can't have anything serious!! My symptoms are stomach pain, joint and muscle pain, fatigue, constipation, bloating and poor appetite, fibro tender spots all over body and now heart palpitations. I totally believe I have a mag deficiency too and have recently been taking 600mg citrate a day which has helped with bowel movements and heart palpitations. I learnt about this from your experience, again I am so grateful. How much do you reckon I should supplement each day? I am also taking vit d3 as my levels are adequate but not great.
I am strict gf, df, and ef plus no raw veg and fruit and pretty much AI Paleo. My consultant said food has no effect on joint issues when I refused to eat gluten for celiac test as, amongst many symptoms, my joints would be very painful. Give me strength!
Yes, the joint pains are surely caused by food sensitivities. 600 mg of magnesium citrate should be adequate for your situation. If you start to have diarrhea, you probably already realize that you might need to lower the dose, or switch some of it to chealated magnesium (magnesium glycinate). Your kidneys need to be in good condition for the higher doses because if you take more than you can utilize, the kidneys have to take some of it out of the bloodstream to keep the blood level of magnesium within the normal range. It's possible to overwork the kidneys if they have been compromized, but as young as you are, unless you have received a low EGFR (estimated glomerular filtration rate) test score,your kidneys should be OK and able to easily handle the excess from higher doses of magnesium. After a few months your magnesium reserves should be rebuilt somewhat and you may be able to lower the dose. Your body will probably let you know if/when the dose needs to be changed.
Have you considered soy as an undiscovered food intolerance? Even soy lecithin and soy oil is a problem for many of us.
You're very welcome,
Tex
Have you considered soy as an undiscovered food intolerance? Even soy lecithin and soy oil is a problem for many of us.
You're very welcome,
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.
I will continue with the magnesium as my kidneys are fine and hopefully see some issues resolve. Thanks for the info. I think I have resisted soy as I have given up so much but will eliminate it too as you are probably right to mention it. Onwards and upwards! Take care and thanks for the support. I now feel relieved as I will continue to follow the plan outlined here and forget about IBS!
Hi Judy,
Thanks for that information. I am so glad you are finding your way with MC. I am nearly there! We just have to persevere don't we? Don't you think it makes us stronger as people? We now know we have an inner resolve! I will look into those supplements and stay true to my diet. Take care. Amy x
Thanks for that information. I am so glad you are finding your way with MC. I am nearly there! We just have to persevere don't we? Don't you think it makes us stronger as people? We now know we have an inner resolve! I will look into those supplements and stay true to my diet. Take care. Amy x
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex has covered the key points about MC/IBS.
long story short, whether you call it MC/IBS/Colitis - it is all 'inflammation'
and the same protocol works for all of them
- avoid major food triggers
- ensure the body has enough Vit D3 and magnesium
- follow low inflammation gut healing eating plan
- low inflammation lifestyle (minimise stress, toxins, good sleep etc)
giving up soy may sound hard at first, but if you base your eating plan on whole foods and minimal processed items then it is easy to follow.
if you are worried about oral magnesium, then topical works fantastically- epsom salt foot soaks or baths - topical magnesium lotion/oils etc
also rubbing this on your stomach area frequently will help the constipation issues - allowing the magnesium to absorb into the stomach area and help the muscles etc.
long story short, whether you call it MC/IBS/Colitis - it is all 'inflammation'
and the same protocol works for all of them
- avoid major food triggers
- ensure the body has enough Vit D3 and magnesium
- follow low inflammation gut healing eating plan
- low inflammation lifestyle (minimise stress, toxins, good sleep etc)
giving up soy may sound hard at first, but if you base your eating plan on whole foods and minimal processed items then it is easy to follow.
if you are worried about oral magnesium, then topical works fantastically- epsom salt foot soaks or baths - topical magnesium lotion/oils etc
also rubbing this on your stomach area frequently will help the constipation issues - allowing the magnesium to absorb into the stomach area and help the muscles etc.
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,
That is very true about the protocol being the same. I don't know why I needed a name for the symptoms but I did. Maybe for validation that they weren't in my head. Maybe just to feel someone took me seriously. Anyhow, health is the ultimate goal regardless. Very good point. Thank you.
I had cut out all legumes but wasn't strict about soy so will tighten that up. What a great idea about spraying mag on my tummy for the constipation! I will definitely do that. I have some spray but tend to swallow tablets.
Really appreciate the response, thanks so much. I am also working on my head as I have a stressful marriage and am sure that plays a large part in my flares. Your wise philosophical approach is often a great inspiration to me and I am sure part of the puzzle. I am working on letting go and trusting the process. Watch this space!!
That is very true about the protocol being the same. I don't know why I needed a name for the symptoms but I did. Maybe for validation that they weren't in my head. Maybe just to feel someone took me seriously. Anyhow, health is the ultimate goal regardless. Very good point. Thank you.
I had cut out all legumes but wasn't strict about soy so will tighten that up. What a great idea about spraying mag on my tummy for the constipation! I will definitely do that. I have some spray but tend to swallow tablets.
Really appreciate the response, thanks so much. I am also working on my head as I have a stressful marriage and am sure that plays a large part in my flares. Your wise philosophical approach is often a great inspiration to me and I am sure part of the puzzle. I am working on letting go and trusting the process. Watch this space!!
Hi Amy....chiming in this morning...you had a point there about needing a name for your symptoms...sometimes it's difficult to realize that all these symptoms aren't in our heads, especially when our doctors diminish the symptoms as JUST IBS and then dismiss us...often families and friends don't realize how rough this disease can be and the toll it takes on our bodies and sense of self....
I took note when you mentioned your stressful marriage... one of our daughters was severely impacted physically by the stress in her marriage and surprisingly it was her doctor who pointed out that she was sacrificing her health to maintain a marriage that was emotionally abusive....it was when he began "treating" her dysfunctional relationship that she found the courage to leave the marriage and could begin to heal....she had Ulcerative Colitis....was following a gluten free diet ( Specific Carbohydrate Diet) and made minimal headway until her doctor gave her "permission" to take an honest look at her life stressors....( her Dad and I had no idea how bad it was...she was keeping it all from us...sigh...)
Please don't take these comments as advice for YOU....I'm just emphasizing how impactful the emotional side of our lives can be on our health....I have seen it in my own life, too....
Sunny
I took note when you mentioned your stressful marriage... one of our daughters was severely impacted physically by the stress in her marriage and surprisingly it was her doctor who pointed out that she was sacrificing her health to maintain a marriage that was emotionally abusive....it was when he began "treating" her dysfunctional relationship that she found the courage to leave the marriage and could begin to heal....she had Ulcerative Colitis....was following a gluten free diet ( Specific Carbohydrate Diet) and made minimal headway until her doctor gave her "permission" to take an honest look at her life stressors....( her Dad and I had no idea how bad it was...she was keeping it all from us...sigh...)
Please don't take these comments as advice for YOU....I'm just emphasizing how impactful the emotional side of our lives can be on our health....I have seen it in my own life, too....
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hi Sunny,
Thanks for your reply. I absolutely believe that the stress in my marriage is causing a lot of my health problems. Sometimes the kindness of the words on this forum brings me to tears as kindness is often lacking in my everyday life. I am so glad your daughter is making progress. I have two teenagers to protect and will always put them first so stay and act the part. However I am an extremely optimistic person also. MC and my personal situation have made me realise that I am extremely strong and capable and that I am responsible for my own happiness. I needed a name for MC as my husband diminishes my needs and opinions and so did my doctors. I feel ready to take stock and move forward now. I, too, don't lean on my parents as my father is very disabled and my mum has a lot to deal with as his full-time carer. I don't lean on them as I love them so much, I am sure that was your daughters motive too.
Take care and many thanks. Amy x
Thanks for your reply. I absolutely believe that the stress in my marriage is causing a lot of my health problems. Sometimes the kindness of the words on this forum brings me to tears as kindness is often lacking in my everyday life. I am so glad your daughter is making progress. I have two teenagers to protect and will always put them first so stay and act the part. However I am an extremely optimistic person also. MC and my personal situation have made me realise that I am extremely strong and capable and that I am responsible for my own happiness. I needed a name for MC as my husband diminishes my needs and opinions and so did my doctors. I feel ready to take stock and move forward now. I, too, don't lean on my parents as my father is very disabled and my mum has a lot to deal with as his full-time carer. I don't lean on them as I love them so much, I am sure that was your daughters motive too.
Take care and many thanks. Amy x
You are also as sharp as a tack to recognize that. In the final analysis, we are as happy as we want to be.Amy wrote:MC and my personal situation have made me realise that I am extremely strong and capable and that I am responsible for my own happiness.
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.
Amy...you are so welcome! My daughter is the "glass is half full "person and very optimistic... in a way it kept her stuck because she kept believing his promises to change and believed tomorrow would bring change ...or next week ....and she tried to protect the kids...and us...
I smiled when I read of your protection of your parents.....I was the main care giver for my hubbie who had a massive stroke in 2009 and she wanted to spare us more grief....(btw...my hubbie has made amazing progress and my care giving is comprised now of love & respect of a wonderful man...)
Wishing you peace and wisdom ...glad you found this group...
Sunny
I smiled when I read of your protection of your parents.....I was the main care giver for my hubbie who had a massive stroke in 2009 and she wanted to spare us more grief....(btw...my hubbie has made amazing progress and my care giving is comprised now of love & respect of a wonderful man...)
Wishing you peace and wisdom ...glad you found this group...
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair