Ken,
What is the purpose/benefit of proving your doctor wrong??
Do you need documented diagnosis for certain reason.
Stress is one of our biggest triggers. We encourage people to minimise stress.
And based on the discussions/suggestions of this forum, you have the information to minimise symptoms and achieve wellness?
I understand that it is frustrating/disappointing that the medical system is not supportive of your issue, albeit, we can't change the medical system.
I cant believe it !!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
It's because of My personal doc.
He believes Me.. But also listens To specialist.
SO he subscribed Me entocort for 2 months.
But Will stop doing It without prove of Mc.
I neeeed a correct diagnose If i have periods that i need entocort.
Plus.. If i cant Go To work.. I also need some prove on paper.
I need This inflammation prove.
I Will minimize stress.. But i Will also continue with prove.
Calprotectin First.
Then another gi specialist with 15 biopsies.
He believes Me.. But also listens To specialist.
SO he subscribed Me entocort for 2 months.
But Will stop doing It without prove of Mc.
I neeeed a correct diagnose If i have periods that i need entocort.
Plus.. If i cant Go To work.. I also need some prove on paper.
I need This inflammation prove.
I Will minimize stress.. But i Will also continue with prove.
Calprotectin First.
Then another gi specialist with 15 biopsies.
I must say I get angry reading about this. It's the same kind of incompetence I suffered for 20 years. MC is by definition patchy. One biopsy can definitively not rule it out. The European consensus is that 6 biopsies should be taken: http://www.emcg-ibd.eu/pdf/EMCG-Flyer-G ... nglish.pdf. Use this leaflet to get you a proper work-up.
Please also be aware that the differential diagnosis for chronic diarrhea includes at least 37 different diseases: http://bestpractice.bmj.com/best-practi ... h/144.html. NCGS is not even included in this list yet. There are a lot of scientific papers stating that calcprotection levels above 50 is a marker of low grade inflammation and a strong indication AGAINST irritable bowel syndrome, which the doctor almost always conclude with when they don't do a detailed work-up. Don't accept that! Your calprotection levels are typical of MC, but by no means diagnostic. I had calprotectin levels just above yours just before I was diagnosed with Collagenous Colitis.
Please also note that bile acid diarrhea/bile acid malabsorption probably is the most frequent disorder on the list above (44-60%) of patients with MC also has BAD/BAM. 1/3 of patients in special care previously diagnosed with IBS-D has BAD/BAM.
http://onlinelibrary.wiley.com/doi/10.1 ... 081.x/full
http://gut.bmj.com/content/early/2014/0 ... 013-305965
http://www.dailymail.co.uk/health/artic ... -pill.html
As has been noted in a different thread, BAM/BAD can be idopatic or secondary to other illnesses. I think it often is secondary to inflammation. It has been shown twice by SeHCAT measurements that bile acid reabsorption is normalized in patients with IBD and MC after treatment with budesonide/Entocort:
http://gut.bmj.com/content/53/1/78
http://onlinelibrary.wiley.com/doi/10.1 ... 168.x/full
Entocort has also been shown to normalize MC histology. This is also an error source in your case.
NCGS is also a very frequent reason for inflammation and diarrhea. Michael Marsh who made the celiac classification system is a co-author of this free article:
http://www.ncbi.nlm.nih.gov/pubmed/25759526
This article clearly states that low grade inflammation in the small intestine is almost always pathological, often due to gluten and that IBS does not exist. In a recent interview Michael Marsh estimates that 1/3 of the people he has performed gastroscopy on has had low grade inflammation in the small intestines.
In your shoes I would quit budesonide for now, and demand a proper examiniation for Microscopic colitis. I would also discuss a SeHCAT test and/or trial of cholestyramine (a bile acid binder) with my doctor (actually I did). In addition to binding bile, cholestyramine also has the added effect of binding allergens, food additives and bacteria. You might react positive even without BAM/BAD. Please also note that the diagnostic limit for BAD/BAM often is set as low as 10%. I think the literature indicates that 20% would be a better cut-off (average level is 38%). I was measured at 16% after budesonide treatment. I have very good response to cholestyramine despite that the Norwegian cut-off is 10%.
The food elimination thing is very complicated in MC - and takes a long time. I would by no means be without the option of budesonide and cholestyramine. For the time beeing I need a low dose of cholestyramine to control the diarrhea and budesonide to control flares (one week on Entocort on holiday this summer).
I hope this can be of some help for you. I have no patience left for this kind of doctor ignorance, and would have made very explicit demands in your case.
BTW: I can send you PDF's of the articles if you don't have access to all of them. Send me a PM.
Please also be aware that the differential diagnosis for chronic diarrhea includes at least 37 different diseases: http://bestpractice.bmj.com/best-practi ... h/144.html. NCGS is not even included in this list yet. There are a lot of scientific papers stating that calcprotection levels above 50 is a marker of low grade inflammation and a strong indication AGAINST irritable bowel syndrome, which the doctor almost always conclude with when they don't do a detailed work-up. Don't accept that! Your calprotection levels are typical of MC, but by no means diagnostic. I had calprotectin levels just above yours just before I was diagnosed with Collagenous Colitis.
Please also note that bile acid diarrhea/bile acid malabsorption probably is the most frequent disorder on the list above (44-60%) of patients with MC also has BAD/BAM. 1/3 of patients in special care previously diagnosed with IBS-D has BAD/BAM.
http://onlinelibrary.wiley.com/doi/10.1 ... 081.x/full
http://gut.bmj.com/content/early/2014/0 ... 013-305965
http://www.dailymail.co.uk/health/artic ... -pill.html
As has been noted in a different thread, BAM/BAD can be idopatic or secondary to other illnesses. I think it often is secondary to inflammation. It has been shown twice by SeHCAT measurements that bile acid reabsorption is normalized in patients with IBD and MC after treatment with budesonide/Entocort:
http://gut.bmj.com/content/53/1/78
http://onlinelibrary.wiley.com/doi/10.1 ... 168.x/full
Entocort has also been shown to normalize MC histology. This is also an error source in your case.
NCGS is also a very frequent reason for inflammation and diarrhea. Michael Marsh who made the celiac classification system is a co-author of this free article:
http://www.ncbi.nlm.nih.gov/pubmed/25759526
This article clearly states that low grade inflammation in the small intestine is almost always pathological, often due to gluten and that IBS does not exist. In a recent interview Michael Marsh estimates that 1/3 of the people he has performed gastroscopy on has had low grade inflammation in the small intestines.
In your shoes I would quit budesonide for now, and demand a proper examiniation for Microscopic colitis. I would also discuss a SeHCAT test and/or trial of cholestyramine (a bile acid binder) with my doctor (actually I did). In addition to binding bile, cholestyramine also has the added effect of binding allergens, food additives and bacteria. You might react positive even without BAM/BAD. Please also note that the diagnostic limit for BAD/BAM often is set as low as 10%. I think the literature indicates that 20% would be a better cut-off (average level is 38%). I was measured at 16% after budesonide treatment. I have very good response to cholestyramine despite that the Norwegian cut-off is 10%.
The food elimination thing is very complicated in MC - and takes a long time. I would by no means be without the option of budesonide and cholestyramine. For the time beeing I need a low dose of cholestyramine to control the diarrhea and budesonide to control flares (one week on Entocort on holiday this summer).
I hope this can be of some help for you. I have no patience left for this kind of doctor ignorance, and would have made very explicit demands in your case.
BTW: I can send you PDF's of the articles if you don't have access to all of them. Send me a PM.
Life's hard and then you die
I wouldn't do another calprotectin test. The chances are that the new test is below cut-off due to the budesonide or natural variations in disease activity. The test you already have, and the response to budesonide, is both indicative of some kind of low grade inflammation. Classic IBD will most often show much higher values. MC can be slightly elevated as in your case - or normal:
http://www.ncbi.nlm.nih.gov/pubmed/17556903
http://www.gastrojournal.org/article/S0 ... 0361-2/pdf
http://www.ncbi.nlm.nih.gov/pubmed/24286461
I like to think that I have a strong mind, but it failed totally in controlling the kind of diarrhea I've had (8-10 times a day at the worst). You seem to have concluded likewise.
--Tor
BTW IMHO it is best if possible to start with the diagnosis, and then go on to treatment. If you start with treatment, you might fail the somewhat accidental diagnistic limits. Then the medication might be removed because of lack of diagnosis ...
http://www.ncbi.nlm.nih.gov/pubmed/17556903
http://www.gastrojournal.org/article/S0 ... 0361-2/pdf
http://www.ncbi.nlm.nih.gov/pubmed/24286461
I like to think that I have a strong mind, but it failed totally in controlling the kind of diarrhea I've had (8-10 times a day at the worst). You seem to have concluded likewise.
--Tor
BTW IMHO it is best if possible to start with the diagnosis, and then go on to treatment. If you start with treatment, you might fail the somewhat accidental diagnistic limits. Then the medication might be removed because of lack of diagnosis ...
Life's hard and then you die
From what I can gather, your colonoscopy has ruled out Colon cancer, Ulcerative colitis and Crohns. Then there are 35 more to go. I would quit budesonide and diet changes and do a provocation for about 2-6 weeks, and then do the following tests:
1) Celiac disease should be ruled out. Have you had the HLA-DQ2/DQ8 test done? If not, it can help rule celiac disease out. Have you done the celiac blood tests? If not, they can help rulle celiac disease out. Gastroscopy should be considered depending on blood tests, other autoimmune diseases and other family members with the disease.
2) Medication induced diarrhea should be ruled out. Do you use NSAIDS, SSRI's or statins? Lipophilic statins like Simvastatin reduce reuptake of bile acid, and can induce diarrhea.
3) IgE-mediated food allergies should be ruled out. This can be done with blood or a prick test. I will have these tests done later this fall myself.
4) Lactose intolerance should be ruled out with a blood test or by biopsies during gastroscopy.
5) Lack of pancreas enzymes should be ruled out. This can be done with a simple blood test
6) Microscopic colitis should be ruled out. You will need a colonoscopy with at least 6 biopsies for that.
7) BAD/BAM should be ruled out. This can be done with a SeHCAT test and/or with testing the effect of cholestyramine.
8) NCGS should be ruled out. IgG/IgA against gluten in blood and/or MARSH 1-2 (low grade inflammation) during gastroscopy is indicative, but only a provocation diet is diagnostic.
9) Other food sensitivities should be ruled out by elimination diet and/or Enterolab testing. Dairy, Egg and Soy are very frequent offenders.
Actually I've done all these myself at some point, except IgE-tests and provocation diet for NCGS. I will do these later this fall. Several of these issues are related, so more than one concormittant issue are frequently seen, for example Celiac disease, Lactose intolerance and Micropscopic colitis and Microscopic colitis, food sensitivities, Bile acid malabsorption and Celiac disease/NCGS.
There are still a lot more conditions to go, but these are the most relevant/prevalent, IMHO. Several of these are simple blood work, but the other ones boils down to another colonoscopy, SeHCAT-test and gastroscopy depending on blood work.
Thyroid issues and bacterial issues might be relevant, but I don't know much about them. I think thyroid issuses can be determined by blood work and bacterial issuses (SIBO) by a breath test.
I think a diagnosis is very helpful. You will get a lot more support from the health care system with a firm diagnosis than beeing labeled IBS. You will have more tools than diet to control your disease, and you will probably be more motivated for permanent diet changes.
1) Celiac disease should be ruled out. Have you had the HLA-DQ2/DQ8 test done? If not, it can help rule celiac disease out. Have you done the celiac blood tests? If not, they can help rulle celiac disease out. Gastroscopy should be considered depending on blood tests, other autoimmune diseases and other family members with the disease.
2) Medication induced diarrhea should be ruled out. Do you use NSAIDS, SSRI's or statins? Lipophilic statins like Simvastatin reduce reuptake of bile acid, and can induce diarrhea.
3) IgE-mediated food allergies should be ruled out. This can be done with blood or a prick test. I will have these tests done later this fall myself.
4) Lactose intolerance should be ruled out with a blood test or by biopsies during gastroscopy.
5) Lack of pancreas enzymes should be ruled out. This can be done with a simple blood test
6) Microscopic colitis should be ruled out. You will need a colonoscopy with at least 6 biopsies for that.
7) BAD/BAM should be ruled out. This can be done with a SeHCAT test and/or with testing the effect of cholestyramine.
8) NCGS should be ruled out. IgG/IgA against gluten in blood and/or MARSH 1-2 (low grade inflammation) during gastroscopy is indicative, but only a provocation diet is diagnostic.
9) Other food sensitivities should be ruled out by elimination diet and/or Enterolab testing. Dairy, Egg and Soy are very frequent offenders.
Actually I've done all these myself at some point, except IgE-tests and provocation diet for NCGS. I will do these later this fall. Several of these issues are related, so more than one concormittant issue are frequently seen, for example Celiac disease, Lactose intolerance and Micropscopic colitis and Microscopic colitis, food sensitivities, Bile acid malabsorption and Celiac disease/NCGS.
There are still a lot more conditions to go, but these are the most relevant/prevalent, IMHO. Several of these are simple blood work, but the other ones boils down to another colonoscopy, SeHCAT-test and gastroscopy depending on blood work.
Thyroid issues and bacterial issues might be relevant, but I don't know much about them. I think thyroid issuses can be determined by blood work and bacterial issuses (SIBO) by a breath test.
I think a diagnosis is very helpful. You will get a lot more support from the health care system with a firm diagnosis than beeing labeled IBS. You will have more tools than diet to control your disease, and you will probably be more motivated for permanent diet changes.
Life's hard and then you die
Hi Ken,
The Americans who can't afford Entocort in the states (it can run $3000.00 in the US) will buy it from a specific pharmacy in India at a more affordable price and no prescription is required. If you feel Entocort is helping but you are not getting support from your doctor that might be an option. Please post if you would like the contact info of the pharmacy in India that a number of the Americans have used and I'm sure someone can give you the info. It would allow you to buy direct without a Doctors prescription.
Brandy
The Americans who can't afford Entocort in the states (it can run $3000.00 in the US) will buy it from a specific pharmacy in India at a more affordable price and no prescription is required. If you feel Entocort is helping but you are not getting support from your doctor that might be an option. Please post if you would like the contact info of the pharmacy in India that a number of the Americans have used and I'm sure someone can give you the info. It would allow you to buy direct without a Doctors prescription.
Brandy
Hi Ken,
I did my above post before reading the entire thread. It sounds like quiting budesonide for short term of additional testing is the way to go. If you decide you want budesonide down the road but get the run around from your docs India might be a resource for you. A lot of Americans on the forum have used the pharmacy in India.
Welcome to the forum also! Brandy
I did my above post before reading the entire thread. It sounds like quiting budesonide for short term of additional testing is the way to go. If you decide you want budesonide down the road but get the run around from your docs India might be a resource for you. A lot of Americans on the forum have used the pharmacy in India.
Welcome to the forum also! Brandy
Hi Ken,
Agree with Tor's comments:
Brandy
Agree with Tor's comments:
Ken, a lot of the Americans are on GI doc #3 or GI doc #4 when they find our forum. Keep seeking.I think a diagnosis is very helpful. You will get a lot more support from the health care system with a firm diagnosis than beeing labeled IBS. You will have more tools than diet to control your disease, and you will probably be more motivated for permanent diet changes.
Brandy
THX Guy's.
If calprotectin test shows positive.. My personal doc Will give Me budesonide when needee.
NO problem.
If test shows lower then 50 wich i totally cant believe..
Then diet is working.
But i dont think calpro Will Be negative.
The diarrea is gone for now. 3days without budosonide. But i Read that relapse can happen in 2weeks
If calprotectin test shows positive.. My personal doc Will give Me budesonide when needee.
NO problem.
If test shows lower then 50 wich i totally cant believe..
Then diet is working.
But i dont think calpro Will Be negative.
The diarrea is gone for now. 3days without budosonide. But i Read that relapse can happen in 2weeks
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I am in Australia
never had a calprotectin test.
even though I had digestion/IBS issues most of my life and my mother has crohns
to be honest, I had never heard of it until you mentioned it in your discussions.
never had a calprotectin test.
even though I had digestion/IBS issues most of my life and my mother has crohns
to be honest, I had never heard of it until you mentioned it in your discussions.
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 Tor,Tor wrote:
Actually I've done all these myself at some point, except IgE-tests and provocation diet for NCGS. I will do these later this fall.
Regarding a provocation diet for Non Celiac Gluten Sensitivity (you react to gluten as if you were a celiac, but it can't be seen in biopsies nor in blood tests). I tried 18 months ago to get this test done, but I was told that no hospital offer this test anymore (blind food provocation, done in hospitals). They are expensive and timeconsuming. I follow the chat ("Nettprat") on NCF's homepage where professor Trond S. Halstensen has stated that it is nearly impossible to get the test done nowadays.
I would love to hear if you know of an institution offering the test.
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