Yesterday I saw the Gastroenterologist in a local hospital. I went there with trepidation because a lot of you have had negative experiences with these doctors and their attitude to diet. I was pleasantly surprised. This was a lady in her late forties of German origin. After we had discussed the various possible causes and treatment options we agreed on a course of Entocort at 9 mg/day for 6 weeks, followed by 2 weeks at 6 mg and 2 weeks at 3 mg. She told me to go back on gluten as she wants to test my blood for gluten intolerance. This was a welcome message just before Christmas. It could mean that I spend Christmas on the potty, but at least I can eat what I want.
We agreed that I should wait a month before I start the Entocort to test my theory that Spiriva could be the cause of the MC. I have been off caffeine, alcohol, gluten and dairy for nearly a month, but she thinks that the only item of importance is the gluten. According to her some people are intolerant to dairy, but she says that it manifests itself in other ways. So now I can look forward to a piece of Stilton and a glass of port for Christmas. Things are looking up. I really enjoyed a proper cup of coffee after my abstinence.
She briefed me on the side-effects of Entocort and prescribed calcium and vitamin D to avoid depletion and she wants to test my B12 level along with a list of other test. She wants to see me after the first 6 weeks to review the effect of the Entocort and the results of the blood tests.
Many of you have mixed feelings about US doctors, but I must say that the German doctors I have come across in this country have a much different view of causes and treatments and can think outside the box. I got none of the standard textbook preaching about taking Imodium and increase the intake of fibre and liquids. I was so relaxed when I got home that I had the best sleep since this all started 4 months ago.
Rolf
My colitis journey. Phase 2.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rolf,
Obviously, that doctor told you what you wanted to hear, which is nice (and relaxing), if not necessarily beneficial. Before I get to the details of your post (so that I don't appear to be excessively critical of her qualifications), here is my overall impression of the GI specialist you visited, regarding her skills for treating MC patients: Yes, she is far ahead of most of her colleagues, and she is obviously trying to learn about the disease while keeping an open mind, something that most GI specialists seem to be incapable of doing. That said, she still has some misconceptions about the disease due to lingering effects from faulty medical school training.
Not only that, but if you have been off gluten long enough for some significant healing to occur, it can take 4–6 months or more for the villus damage to reach a level that will trigger a positive test result, even if you are a celiac. This means that you may begin having symptoms very soon after adding gluten back into your diet, but every celiac blood test result will be negative until enough damage has accrued to trigger a positive result, and this typically takes months (despite what most doctors claim). Many physicians falsely believe that 4–6 weeks of a gluten challenge is sufficient to trigger a positive test result, but that rarely happens in the real world. They will wait 6 weeks, take a blood test, receive a negative result, and falsely conclude that the patient is not sensitive to gluten. And it will never occur to them that their methods are worthless, because they do it routinely, so "it must be OK".
That said, if you want an official diagnosis of celiac disease, then this is the only way that it can be done by today's medical rules. You can save some suffering by doing a DNA test to see if you have one of the celiac genes (DQ2 or DQ8), because if you do not have at least one of those genes, I'll guarantee that you will never be officially diagnosed with celiac disease. Unfortunately though, not having one of the celiac genes does not mean that you can not be sensitive to gluten — it just means that you will never develop a Marsh 3 level of villus damage, which means that you cannot be officially diagnosed with celiac disease.
I will predict that if you follow that doctor's advice to reintroduce all those foods into your diet, you will have a miserable holiday period, followed by a negative test result for celiac disease, and then you will be faced with the dilemma of having to choose whether you want to believe that doctor's opinion that you are not sensitive to those foods and spend the rest of your life taking drugs to try to control your symptoms and suffering in the bathroom; or you can decide to do as most of us here do, and ignore all the faulty medical advice, avoid all of our food sensitivities, and enjoy life again.
I hope that some of this is helpful.
Tex
Obviously, that doctor told you what you wanted to hear, which is nice (and relaxing), if not necessarily beneficial. Before I get to the details of your post (so that I don't appear to be excessively critical of her qualifications), here is my overall impression of the GI specialist you visited, regarding her skills for treating MC patients: Yes, she is far ahead of most of her colleagues, and she is obviously trying to learn about the disease while keeping an open mind, something that most GI specialists seem to be incapable of doing. That said, she still has some misconceptions about the disease due to lingering effects from faulty medical school training.
This is an archaic practice used simply because accurate and reliable testing methods for detecting gluten sensitivity have not been officially approved by the medical community. An accurate test does exist (a stool test offered by EnteroLab, in Dallas, Texas), but the medical community refuses to acknowledge its existence, because of professional snobbery. As a result, the only official gluten-associated tests offered by the mainstream medical community are the blood tests used for screening for celiac disease. These blood tests are very insensitive and they are prone to false negative results because they will only detect fully-developed celiac disease. Fully-developed celiac disease requres at least a Marsh 3 level of damage to the villi of the small intestine, and that typically requires at least several years of cumulative damage before the damage becomes severe enough to trigger a positive test result. Because of that poor test sensitivity, only approximately 1 in 20 celiacs are actually officially diagnosed, and no one who has non-celiac gluten sensitivity can be diagnosed by those tests.Rolf wrote:She told me to go back on gluten as she wants to test my blood for gluten intolerance. This was a welcome message just before Christmas. It could mean that I spend Christmas on the potty, but at least I can eat what I want.
Not only that, but if you have been off gluten long enough for some significant healing to occur, it can take 4–6 months or more for the villus damage to reach a level that will trigger a positive test result, even if you are a celiac. This means that you may begin having symptoms very soon after adding gluten back into your diet, but every celiac blood test result will be negative until enough damage has accrued to trigger a positive result, and this typically takes months (despite what most doctors claim). Many physicians falsely believe that 4–6 weeks of a gluten challenge is sufficient to trigger a positive test result, but that rarely happens in the real world. They will wait 6 weeks, take a blood test, receive a negative result, and falsely conclude that the patient is not sensitive to gluten. And it will never occur to them that their methods are worthless, because they do it routinely, so "it must be OK".
That said, if you want an official diagnosis of celiac disease, then this is the only way that it can be done by today's medical rules. You can save some suffering by doing a DNA test to see if you have one of the celiac genes (DQ2 or DQ8), because if you do not have at least one of those genes, I'll guarantee that you will never be officially diagnosed with celiac disease. Unfortunately though, not having one of the celiac genes does not mean that you can not be sensitive to gluten — it just means that you will never develop a Marsh 3 level of villus damage, which means that you cannot be officially diagnosed with celiac disease.
It's true that gluten is the reason why the other food sensitivities develop (because gluten causes increased intestinal permeability), but unfortunately it's not true that it is the only important item, because once another food sensitivity develops, removing gluten from the diet will not necessarily eliminate any other food sensitivities.Rolf wrote:I have been off caffeine, alcohol, gluten and dairy for nearly a month, but she thinks that the only item of importance is the gluten.
She is only thinking of lactose intolerance, which is an irrelevant phenomenon in this case. Anyone and everyone who has enteritis (intestinal inflammation) will have lactose intolerance, but the effect is only temporary, and it resolves after the inflammation ends. Even the flu causes enteritis, so it causes lactose intolerance. Lactose is not our primary problem with dairy products, however. Casein is the problem — we produce antibodies to casein, and these antibodies result in the release of inflammatory cytokines and other inflammation modulators that cause the T cell infiltration that causes MC. Lactose intolerance does not cause antibody production. It only causes poor digestion resulting in undigested lactose that is fermented by bacteria in the colon, resulting in gas, bloating, and diarrhea.Rolf wrote:According to her some people are intolerant to dairy, but she says that it manifests itself in other ways.
Unless coffee caused you to have to run to the bathroom before your MC symptoms began, then there is no reason why it should be any different now. Most of us drink coffee with no problems. Just be careful what you put into it. Most of the so-called "non-dairy" creamers contain casein. How they can legally be called "non-dairy" is anybody's guess.Rolf wrote:I really enjoyed a proper cup of coffee after my abstinence.
I will predict that if you follow that doctor's advice to reintroduce all those foods into your diet, you will have a miserable holiday period, followed by a negative test result for celiac disease, and then you will be faced with the dilemma of having to choose whether you want to believe that doctor's opinion that you are not sensitive to those foods and spend the rest of your life taking drugs to try to control your symptoms and suffering in the bathroom; or you can decide to do as most of us here do, and ignore all the faulty medical advice, avoid all of our food sensitivities, and enjoy life again.
I hope that some of this is helpful.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I agree with Tex's reply,
years ago I had a doctor do the same thing to me, made me eat gluten to do the blood test
the blood test was negative, it took me 4 weeks to recover from eating gluten. (this was BEFORE my MC Dx)
I dont need a blood test to tell me that i have issues with gluten, my gut, my body (via aches and pains, and brain fog) tells me that gluten is a big issue!
as per the other discussion, I have no issues with Black Coffee. some do, some dont, if you had no issues pre MC, then it is ok. Coffee does deplete magnesium and can impact the adrenals, only with excessive consumption.
in line with the dairy discussion, Dairy and Alcohol are highly inflammatory items to the digestion. If you consume these it will raise inflammation levels in the gut. if you go ahead with the gluten challenge and have the dairy and alcohol at the same time it is a inflammation time bomb in my opinion and could take you months to recover.
years ago I had a doctor do the same thing to me, made me eat gluten to do the blood test
the blood test was negative, it took me 4 weeks to recover from eating gluten. (this was BEFORE my MC Dx)
I dont need a blood test to tell me that i have issues with gluten, my gut, my body (via aches and pains, and brain fog) tells me that gluten is a big issue!
as per the other discussion, I have no issues with Black Coffee. some do, some dont, if you had no issues pre MC, then it is ok. Coffee does deplete magnesium and can impact the adrenals, only with excessive consumption.
in line with the dairy discussion, Dairy and Alcohol are highly inflammatory items to the digestion. If you consume these it will raise inflammation levels in the gut. if you go ahead with the gluten challenge and have the dairy and alcohol at the same time it is a inflammation time bomb in my opinion and could take you months to recover.
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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koksvik
I don't mind somebody telling me I am stupid because I know I am not. But when somebody insinuates I am stupid I get really pissed off. Now you are making me feel as if I swore in Church.
All my professional career has been centered on problem solving, starting with a theory and then testing it. That is a well known method in science and anyone with Tex's background has gone through this process many times and I therefore have a problem with the condescending attitude in the last post.
Let me say it again. I have never in my life had a problem with my digestive system until this MC issue turned up 4 months ago. I have never had any allergies. I have never had any food intolerances. I have my own theory about what caused this and I am going to test it whatever doomsday scenario you throw at me. The world according to Wayne Persky could be just as wrong as any other world view. And to write off the whole of the medical profession as a bunch of misguided sheep is actually rather far fetched.
Rolf
All my professional career has been centered on problem solving, starting with a theory and then testing it. That is a well known method in science and anyone with Tex's background has gone through this process many times and I therefore have a problem with the condescending attitude in the last post.
Let me say it again. I have never in my life had a problem with my digestive system until this MC issue turned up 4 months ago. I have never had any allergies. I have never had any food intolerances. I have my own theory about what caused this and I am going to test it whatever doomsday scenario you throw at me. The world according to Wayne Persky could be just as wrong as any other world view. And to write off the whole of the medical profession as a bunch of misguided sheep is actually rather far fetched.
Rolf
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Rolf,
This is a 'discussion and support forum', where people post, and we discuss and share the knowledge learnt via of the couple of thousand of people diagnosed with MC that have been part of this group for over 10 years.
If you don't want this input, don't post.
This is a 'discussion and support forum', where people post, and we discuss and share the knowledge learnt via of the couple of thousand of people diagnosed with MC that have been part of this group for over 10 years.
If you don't want this input, don't post.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Koksvik, I have a medical doctorate degree and I have bowed to the fact that the medical community knows little, if nothing, about microscopic colitis. I had never even heard of it, despite my higher education level. It wasn't until I had my colonoscopy and biopsy that I was diagnosed. Even then, I continued to have symptoms despite taking entocort and Lialda for a month. My symptoms did not improve. What I can tell you is that the condition is real, despite what conventional tests may tell you. Do not dismiss these tests. I assure you, you will continue with negative results despite what your doctor tells you. Once I determined my dietary restrictions, my GI symptoms began to improve. You can, of course, take my experience as a doctor with a grain of salt...
Community pharmacist
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koksvik
Gabes,
You are a moderator of this group so I suggest you moderate yourself. What you are now expressing is quite simply a fascist view of the world. People with such views were hanged in Nuremberg in 1945-46.
I try to support you by telling you what is happening to me, but instead I get your views rammed down my throat time and time again. You sound like a cracked record. Is it not time to realize that there could be other aspects to MC than the ones you are perpetuating. Science is all about asking why, how, where and when.
Rolf
You are a moderator of this group so I suggest you moderate yourself. What you are now expressing is quite simply a fascist view of the world. People with such views were hanged in Nuremberg in 1945-46.
I try to support you by telling you what is happening to me, but instead I get your views rammed down my throat time and time again. You sound like a cracked record. Is it not time to realize that there could be other aspects to MC than the ones you are perpetuating. Science is all about asking why, how, where and when.
Rolf
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koksvik
Bearcat,
I also have a degree and before I started working on the International Space Station I had not heard of orbital mechanics, transfer orbits, reboost strategies etc. After 10 years of it I would still not proclaim that I know it better than other scientists.
I certainly will not put your experiences into question, but I am entitled to follow my own way with my own body and to make the same mistakes as you if I so choose.
Rolf
I also have a degree and before I started working on the International Space Station I had not heard of orbital mechanics, transfer orbits, reboost strategies etc. After 10 years of it I would still not proclaim that I know it better than other scientists.
I certainly will not put your experiences into question, but I am entitled to follow my own way with my own body and to make the same mistakes as you if I so choose.
Rolf
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louis
Then go ahead and make your own mistakes, nobody trying to stop you. You are free to choose what advice you want to follow-
But there is no reason to attack the people here trying to help you. And they dont push anything on you, you were the one posting here and asking for assistance- And by all means, we dont need your support by telling us what is happening to you. Its actually rather insulting you think you can help us, because - you had to deal with this for 4 month? Oh great, there are people here that have this condition for 10-20 years, and you come here and want to help us? Funny, really funny.
But there is no reason to attack the people here trying to help you. And they dont push anything on you, you were the one posting here and asking for assistance- And by all means, we dont need your support by telling us what is happening to you. Its actually rather insulting you think you can help us, because - you had to deal with this for 4 month? Oh great, there are people here that have this condition for 10-20 years, and you come here and want to help us? Funny, really funny.
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koksvik
Louis,
I might have an eyesight problem, but I can obviously read better than you. Read my posts and you will see that I have never offered you any help and I have never asked for assistance from any of you. I just wanted to let you know what is happening to me so you can expand your knowledge base. If you are not interested I shall sign off for good and leave you to it.
You think this is funny? I have had enough German colleagues to know that humour is a scarce commodity in Germany. Get real and try to understand what I write.
Rolf
I might have an eyesight problem, but I can obviously read better than you. Read my posts and you will see that I have never offered you any help and I have never asked for assistance from any of you. I just wanted to let you know what is happening to me so you can expand your knowledge base. If you are not interested I shall sign off for good and leave you to it.
You think this is funny? I have had enough German colleagues to know that humour is a scarce commodity in Germany. Get real and try to understand what I write.
Rolf
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louis
You wrote "I try to support you by telling you what is happening to me" In my dictionary support is a synonym for help.
And writing your story here and asking questions IS asking for assistance. Maybe I should have made it clear that I was being sarcastic when saying this is funny.
You have helped me expand my knowledge base about ignorant people quite a bit, so thanks.
And writing your story here and asking questions IS asking for assistance. Maybe I should have made it clear that I was being sarcastic when saying this is funny.
You have helped me expand my knowledge base about ignorant people quite a bit, so thanks.
Kjære Rolf,
Jeg er 68 år gammel og har de siste 5 år slitt med MC. Jeg har gjort presis som det du nå er i ferd med å gjøre, men jeg kastet bort 4 år av livet mitt på å lytte til legene. De vet ingenting om MC, men det gjør dette forumet.
Jeg har ikke tid til å sitte på toalettet de årene jeg måtte ha igjen av livet mitt.
På grunn av gode råd her inne har jeg på 1 år klart å bli kvitt psoriasisen min, hjernetåken, kvalmen og en eksplosiv diaré 24/7 som hadde vart i nesten 2 år.
Folk her inne har vært syk i opptil 20 år, og sitter med masse kunnskap og erfaring som de er villig til å dele med oss.
Det gjør meg ydmyk å tenke på.
Berit
Jeg er 68 år gammel og har de siste 5 år slitt med MC. Jeg har gjort presis som det du nå er i ferd med å gjøre, men jeg kastet bort 4 år av livet mitt på å lytte til legene. De vet ingenting om MC, men det gjør dette forumet.
Jeg har ikke tid til å sitte på toalettet de årene jeg måtte ha igjen av livet mitt.
På grunn av gode råd her inne har jeg på 1 år klart å bli kvitt psoriasisen min, hjernetåken, kvalmen og en eksplosiv diaré 24/7 som hadde vart i nesten 2 år.
Folk her inne har vært syk i opptil 20 år, og sitter med masse kunnskap og erfaring som de er villig til å dele med oss.
Det gjør meg ydmyk å tenke på.
Berit
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
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koksvik
Dear Berit,
Thank you for your advice. I do not doubt for one minute that the members of this forum have a great deal of experience, but I have heard it all by now and I have read the books by Tex. What is getting up my nose is that every time I post something I get to hear it all again. If I have heard it once I have heard it a hundred times and there is never anything new. I just want to get on with my MC my way and if anyone tells me again that I am doing it the wrong way, I can only ask how they can possibly know that when we are all different. Crystal balls are for superstitious people and I am not one of them.
I am glad you have got rid of your ailments, but the members of this group keep stressing that everyone is different and that is why I have chosen to take a slightly different course. I don't have psoriasis or brain fog or nausea or 24/7 explosive diarrhea. My diarrhea is getting better for every day that passes and by now I know it so well that it is only a slight impediment to my daily routine. I am not one to put my faith in doctors, I have met plenty of dubious ones, but I am willing to listen to them as long as what they say makes sense and fits with my knowledge base. Tex has listed 258 references in his book on colitis. I believe it took him 10 years to compile it all and I intend to go through them all. It might take me a few years too, but without a fuller picture of the situation I am not backing one approach over another. There is one caveat to this. If the MC disappears I shall close the book and get on with a more interesting part of my life. My 36th great grandfather was Harald Hårfagre and I would rather spend time researching him than MC.
I realize I have upset a few people with my approach, but as you know Norwegians call a spade a spade. The Dutch are quite good at it too. If cultural differences are difficult to fathom it is necessary to take a more relaxed attitude to what people say on this forum.
Ha det bra,
Rolf
Thank you for your advice. I do not doubt for one minute that the members of this forum have a great deal of experience, but I have heard it all by now and I have read the books by Tex. What is getting up my nose is that every time I post something I get to hear it all again. If I have heard it once I have heard it a hundred times and there is never anything new. I just want to get on with my MC my way and if anyone tells me again that I am doing it the wrong way, I can only ask how they can possibly know that when we are all different. Crystal balls are for superstitious people and I am not one of them.
I am glad you have got rid of your ailments, but the members of this group keep stressing that everyone is different and that is why I have chosen to take a slightly different course. I don't have psoriasis or brain fog or nausea or 24/7 explosive diarrhea. My diarrhea is getting better for every day that passes and by now I know it so well that it is only a slight impediment to my daily routine. I am not one to put my faith in doctors, I have met plenty of dubious ones, but I am willing to listen to them as long as what they say makes sense and fits with my knowledge base. Tex has listed 258 references in his book on colitis. I believe it took him 10 years to compile it all and I intend to go through them all. It might take me a few years too, but without a fuller picture of the situation I am not backing one approach over another. There is one caveat to this. If the MC disappears I shall close the book and get on with a more interesting part of my life. My 36th great grandfather was Harald Hårfagre and I would rather spend time researching him than MC.
I realize I have upset a few people with my approach, but as you know Norwegians call a spade a spade. The Dutch are quite good at it too. If cultural differences are difficult to fathom it is necessary to take a more relaxed attitude to what people say on this forum.
Ha det bra,
Rolf
Rolf,
That's interesting. My grandmother claimed that we descend from Harald Hårfagre as well. Her family is from Avaldsnes where he had his royal seat, and they have lived there as long as it is possible to go back. However, I have never tried to verify this.
I hope that your MC will improve and that you will have time to research him as well.
Berit
That's interesting. My grandmother claimed that we descend from Harald Hårfagre as well. Her family is from Avaldsnes where he had his royal seat, and they have lived there as long as it is possible to go back. However, I have never tried to verify this.
I hope that your MC will improve and that you will have time to research him as well.
Berit
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
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This is unacceptable. You do not have to agree with everything or anything anyone here says to you and you certainly aren't required to follow anyone's advice. What is required on this forum is that people treat each other with respect. This remark is extremely disrespectful. It is name calling and will not be tolerated here. It is always possible to argue the merits of someone's scientific arguments or practical advice without resorting to calling that person names. Gates states her opinion, Tex states his opinion and on occasion I state my opinion. We don't always agree but we don't call each other names.koksvik wrote:Gabes,
You are a moderator of this group so I suggest you moderate yourself. What you are now expressing is quite simply a fascist view of the world. People with such views were hanged in Nuremberg in 1945-46.
I try to support you by telling you what is happening to me, but instead I get your views rammed down my throat time and time again. You sound like a cracked record. Is it not time to realize that there could be other aspects to MC than the ones you are perpetuating. Science is all about asking why, how, where and when.
Rolf
Jean