Hello All:
My name is Rich. I an 44 and newly diagnosed with LC. I have had numerous scopings over the years, only to be told I had IBS or it was all in my mind. I always suspected a form of IBD but was told it was in my head. To make matters worse, I had a grandfather with UC and I am very much like him physically.
I started Entocort EC 2 days ago as prescribed by my colorectal surgeon (whom I trust very much). I have yet to find a good GI doc in my area. And as Tex seems to state with consistency, most docs simply know less than we do about our own conditions.
Being new to this, I was wondering how long it could take to notice a response with Entocort? And is it also safe to take Pepto with it?
Also, what should my diet consists of? I see most are going gluten and lactose free. I have lost a lot of weight and have always been on the thin side so I want to start eating right and putting the pounds back on.
Any advice for a newbie who has been suffering for so long would be appreciated.
I am thankful for your help and for this forum.
Regards,
Rich
Newly diagnosed - after 5 long years!!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rich,
Welcome to our internet family. Sorry it took so long to get a diagnosis.
The reason why so many of us totally avoid gluten and casein, (it's not just lactose, the sugar, that affects us, we're also sensitive to the primary protein in milk, casein), is because for most of us, when the genes that predispose to MC are triggered, to allow the disease to develop, the genes that cause a dietary sensitivity to gluten and casein are also triggered at the same time. From that time on, gluten and/or casein actually trigger an autoimmune reaction from our immune systems. IOW, gluten and casein cause our immune systems to attack our own tissue, resulting in the inflammation that causes MC. About half of us are also sensitive to soy, (and all it's derivatives), and a few of us are also sensitive to other proteins such as eggs, yeast, corn, carrageenan, etc.
Therefore, we don't just avoid gluten and dairy because we think it's healthier to do so, we have to avoid all traces of them in our diets, in order to keep from having adverse reactions that tend to make us as "sick as a dog". Despite the fact that virtually all of us, (except for those who have fully-developed celiac disease), will always test negative to the classic celiac blood tests, we are just as sensitive to gluten as the average celiac, and some of us are even more sensitive than a typical celiac. That's why we have to avoid gluten and casein. There are a few exceptions, of course, myself included, but most people here who are sensitive to gluten, are also sensitive to casein, and vice versa. We have a few members, however, who do not seem to have any food sensitivities. Usually, in those cases, the disease was triggered by a prescription drug, such as an NSAID, PPI, SSRI, etc. In some of those cases, just avoiding the drug, is sufficient to prevent a recurrence of the disease. Others, who are not so fortunate, have to take additional measures to prevent reactions.
Weight loss with this disease is usually due to a malabsorption problem, caused by inflammation in the small intestine, (even though MC is claimed to affect only the colon), and most members who are able to figure out all their food intolerances, and eliminate them from their diets, are able to achieve and maintain remission, and gain their weight back. The GF diet is not a low-cal diet, though some people have tried to use it that way.
If you're not sure about your food sensitivities, the fastest way to sort them out is with stool testing at Enterolab, in Dallas, TX. Their tests are the only ones in the world, that are sensitive enough that they can detect gluten antibodies in the stool, several years before they show up in the blood, in the case of celiac disease, for example. https://www.enterolab.com/
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
P. S. Forgot to add: Normally, there shouldn't be any problem with using both Pepto-Bismol and Entocort together, or lomotil/Imodium, for that matter.
Welcome to our internet family. Sorry it took so long to get a diagnosis.
The reason why so many of us totally avoid gluten and casein, (it's not just lactose, the sugar, that affects us, we're also sensitive to the primary protein in milk, casein), is because for most of us, when the genes that predispose to MC are triggered, to allow the disease to develop, the genes that cause a dietary sensitivity to gluten and casein are also triggered at the same time. From that time on, gluten and/or casein actually trigger an autoimmune reaction from our immune systems. IOW, gluten and casein cause our immune systems to attack our own tissue, resulting in the inflammation that causes MC. About half of us are also sensitive to soy, (and all it's derivatives), and a few of us are also sensitive to other proteins such as eggs, yeast, corn, carrageenan, etc.
Therefore, we don't just avoid gluten and dairy because we think it's healthier to do so, we have to avoid all traces of them in our diets, in order to keep from having adverse reactions that tend to make us as "sick as a dog". Despite the fact that virtually all of us, (except for those who have fully-developed celiac disease), will always test negative to the classic celiac blood tests, we are just as sensitive to gluten as the average celiac, and some of us are even more sensitive than a typical celiac. That's why we have to avoid gluten and casein. There are a few exceptions, of course, myself included, but most people here who are sensitive to gluten, are also sensitive to casein, and vice versa. We have a few members, however, who do not seem to have any food sensitivities. Usually, in those cases, the disease was triggered by a prescription drug, such as an NSAID, PPI, SSRI, etc. In some of those cases, just avoiding the drug, is sufficient to prevent a recurrence of the disease. Others, who are not so fortunate, have to take additional measures to prevent reactions.
Weight loss with this disease is usually due to a malabsorption problem, caused by inflammation in the small intestine, (even though MC is claimed to affect only the colon), and most members who are able to figure out all their food intolerances, and eliminate them from their diets, are able to achieve and maintain remission, and gain their weight back. The GF diet is not a low-cal diet, though some people have tried to use it that way.
If you're not sure about your food sensitivities, the fastest way to sort them out is with stool testing at Enterolab, in Dallas, TX. Their tests are the only ones in the world, that are sensitive enough that they can detect gluten antibodies in the stool, several years before they show up in the blood, in the case of celiac disease, for example. https://www.enterolab.com/
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
P. S. Forgot to add: Normally, there shouldn't be any problem with using both Pepto-Bismol and Entocort together, or lomotil/Imodium, for that matter.
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.
Tex,
Thanks so much for the prompt reply. I was hoping to get a response from you. You seem very knowledgeable about this condition. And as a fellow engineer, I understand your tenacity to learn and figure things out on your own.
Central Texas, huh? I travel to Dallas, Austin, Houston, San Antonia frequently. You near any of these places? I live in Northern Indiana.
Thanks again for your help.
One last question... any thoughts on steelcut oatmeal as GF?
Rich
Thanks so much for the prompt reply. I was hoping to get a response from you. You seem very knowledgeable about this condition. And as a fellow engineer, I understand your tenacity to learn and figure things out on your own.
Central Texas, huh? I travel to Dallas, Austin, Houston, San Antonia frequently. You near any of these places? I live in Northern Indiana.
Thanks again for your help.
One last question... any thoughts on steelcut oatmeal as GF?
Rich
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Hi Hoosier, welcome to the group!
When I was diagnosed last month I had lost a lot of weight like you had, my GI gave me a booklet on gaining weight safely which basically states add full fat milk, full fat cream, full fat butter and cheese to everything, if you would like me to post ALL the tips that are in this short booklet onto here for you let me know and I shall! (I don't want to do it if you aren't interested, I'm also not sure how effective this diet has been yet, but will tomorrow, although I have to take into consideration that I have a high metabollic rate which means i may not have put much on.)
Naty x
When I was diagnosed last month I had lost a lot of weight like you had, my GI gave me a booklet on gaining weight safely which basically states add full fat milk, full fat cream, full fat butter and cheese to everything, if you would like me to post ALL the tips that are in this short booklet onto here for you let me know and I shall! (I don't want to do it if you aren't interested, I'm also not sure how effective this diet has been yet, but will tomorrow, although I have to take into consideration that I have a high metabollic rate which means i may not have put much on.)
Naty x
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Rich,
Hmmmmm. Your registration ups the number of engineers on this board to at least 5 - I hope that doesn't indicate a connection between engineering and MC.
Other members in engineering include Katy, (kate_ce1995), Hotrod, (RUBYREDDOG), Joe, (joefnh), and possibly one or two others, whom I'm not aware of.
I live on a farm, about half-way between Waco and Austin, just a few miles east of I35, (which runs between Waco and Austin, of course).
Random sampling testing of oat products on the shelves of supermarkets, a few years ago, showed that some brands of oats that don't claim to be GF, (such as Quaker), fared better than famous brands that do claim a GF status, (such as McCann's Irish Oats). Some of the Quaker samples were found to be within, (or very close to), the 20 ppm, (part per million), standard set by the Codex Alimentarius committee, and presumably to be adopted by this country, and most countries in the world, for threshold limits for GF labeling, while some GF brands ran as high as 500 ppm, (quoting from memory here, so I could be off a bit).
Since then, I would assume that most manufacturers of GF oats would be watching their business a little closer. The problem with non-GF certified oats, is that they are not certified GF for a reason - obviously the manufacturer feels that a risk exists that their products might occasionally exceed the allowable GF threshold limit. The problem with the products certified to be GF, is that it's not a perfect world, and stuff happens, so it's still possible that someone might slip up, and let ineligible products slip through. IOW, oats is commonly contaminated with wheat seed, during the growing or handling processes, and wheat seeds are very difficult to remove from oats, during the cleaning processes. 100% removal is virtually impossible, (I own a seed-cleaning facility, and I've cleaned oats and wheat seed. It's easy to remove oats from wheat, but it's almost impossible to remove all the wheat seeds from oats, using conventional equipment.
).
That said, I hadn't eaten any oats, since my symptoms began, over ten years ago, so a couple of years ago, I did an oat challenge, (using oats certified to be GF). I ate oats for breakfast, twice a week, for 6 weeks. At that point, the D started, and it took another 6 weeks for it to completely stop. Since then, anytime I eat oats, it purges my system, within a few hours after eating it, so obviously, I am quite sensitive to it. Quite a few members here have mentioned the same problem, so I have a hunch that while oats protein, (avenin), is not as potent as the prolamin protein in wheat to which we react, (gluten), many of us do react to avenin, even when it is free of gluten.
To be honest, I don't know if anyone here who is sensitive to gluten is able to safely eat oats, or not, because I don't recall anyone posting about that. Enterolab does not have a test to detect avenin antibodies. (I asked them about that when I was doing the oat challenge). Their tests are very specific, and their gluten test will not detect antibodies to the prolamin protein in rye, (secalin), barley, (hordein), or oats, (avenin).
Tex
Hmmmmm. Your registration ups the number of engineers on this board to at least 5 - I hope that doesn't indicate a connection between engineering and MC.
Other members in engineering include Katy, (kate_ce1995), Hotrod, (RUBYREDDOG), Joe, (joefnh), and possibly one or two others, whom I'm not aware of.I live on a farm, about half-way between Waco and Austin, just a few miles east of I35, (which runs between Waco and Austin, of course).
Random sampling testing of oat products on the shelves of supermarkets, a few years ago, showed that some brands of oats that don't claim to be GF, (such as Quaker), fared better than famous brands that do claim a GF status, (such as McCann's Irish Oats). Some of the Quaker samples were found to be within, (or very close to), the 20 ppm, (part per million), standard set by the Codex Alimentarius committee, and presumably to be adopted by this country, and most countries in the world, for threshold limits for GF labeling, while some GF brands ran as high as 500 ppm, (quoting from memory here, so I could be off a bit).
Since then, I would assume that most manufacturers of GF oats would be watching their business a little closer. The problem with non-GF certified oats, is that they are not certified GF for a reason - obviously the manufacturer feels that a risk exists that their products might occasionally exceed the allowable GF threshold limit. The problem with the products certified to be GF, is that it's not a perfect world, and stuff happens, so it's still possible that someone might slip up, and let ineligible products slip through. IOW, oats is commonly contaminated with wheat seed, during the growing or handling processes, and wheat seeds are very difficult to remove from oats, during the cleaning processes. 100% removal is virtually impossible, (I own a seed-cleaning facility, and I've cleaned oats and wheat seed. It's easy to remove oats from wheat, but it's almost impossible to remove all the wheat seeds from oats, using conventional equipment.
).That said, I hadn't eaten any oats, since my symptoms began, over ten years ago, so a couple of years ago, I did an oat challenge, (using oats certified to be GF). I ate oats for breakfast, twice a week, for 6 weeks. At that point, the D started, and it took another 6 weeks for it to completely stop. Since then, anytime I eat oats, it purges my system, within a few hours after eating it, so obviously, I am quite sensitive to it. Quite a few members here have mentioned the same problem, so I have a hunch that while oats protein, (avenin), is not as potent as the prolamin protein in wheat to which we react, (gluten), many of us do react to avenin, even when it is free of gluten.
To be honest, I don't know if anyone here who is sensitive to gluten is able to safely eat oats, or not, because I don't recall anyone posting about that. Enterolab does not have a test to detect avenin antibodies. (I asked them about that when I was doing the oat challenge). Their tests are very specific, and their gluten test will not detect antibodies to the prolamin protein in rye, (secalin), barley, (hordein), or oats, (avenin).
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
Rich and Naty
totally empathise that weight loss is a concern. In my opinion (IMO) it is important to get your digestion happy and healthy and working properly.
you will not absorb nutrients and be in good health to gain weight unless the digestion is happy and healthy.
In some cases this can be easier said than done, but the hard work is definately worth it!
given how many people in this group react to lactose and dairy i am not sure that full fat cream and full fat cheese products are the ideal. then again if you can ingest those items with no issues, knock yourselves out!
Tex - does that mean that i can blame the fact of working with engineers for many years as the reason for my MC?
totally empathise that weight loss is a concern. In my opinion (IMO) it is important to get your digestion happy and healthy and working properly.
you will not absorb nutrients and be in good health to gain weight unless the digestion is happy and healthy.
In some cases this can be easier said than done, but the hard work is definately worth it!
given how many people in this group react to lactose and dairy i am not sure that full fat cream and full fat cheese products are the ideal. then again if you can ingest those items with no issues, knock yourselves out!
Tex - does that mean that i can blame the fact of working with engineers for many years as the reason for my MC?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gee, I hope not. I would think that working with them would be more likely to cause ulcers, or a tendency to use profane language.Gabes wrote:Tex - does that mean that i can blame the fact of working with engineers for many years as the reason for my MC?
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
phew - thank goodness for that.... he he he he
and may i suggest a new stat to appear at the bottom of hte main page
the most newbies that have joined in a week
like wow - it is great newbies are finding this great website it is also quite sad that MC is seeming it is on the increase
Ant and I talked about this during our tete au tete at Hong Kong airport, if this many new people join every month, you will have to get a jumbo server etc
and may i suggest a new stat to appear at the bottom of hte main page
the most newbies that have joined in a week
like wow - it is great newbies are finding this great website it is also quite sad that MC is seeming it is on the increase
Ant and I talked about this during our tete au tete at Hong Kong airport, if this many new people join every month, you will have to get a jumbo server 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
Hmmmmm. I'll have to see if I can figure out a simple way to do that.Gabes wrote:and may i suggest a new stat to appear at the bottom of hte main page
the most newbies that have joined in a week
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.
Oddly enough, I can tolerate oats. I occasionaly eat oatmeal, maybe 1-2 times per month at most. I use Lara's Cream Hill Estates or Bob's Red Mill GF oats and have never been glutened.
Mary Beth
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
I was told that if my D was made worse by increasing the amount of lactose and dairy that was being added to my diet to stop doing it and get in touch with either my GP or my GI so that they could refer me to a dietician to sort this out. Luckily it seems I am not intolerant to these food groups yet and hopefully i will have put some weight on.Gabes-Apg wrote:you will not absorb nutrients and be in good health to gain weight unless the digestion is happy and healthy.
In some cases this can be easier said than done, but the hard work is definately worth it!
given how many people in this group react to lactose and dairy i am not sure that full fat cream and full fat cheese products are the ideal. then again if you can ingest those items with no issues, knock yourselves out!
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Rich,
I agree with Joe - it takes a week or so for most people to see results. A few people see results in just a day or so, while it takes others 6 to 8 weeks to see significant improvement. If improvement hasn't been experienced by 6 to 8 weeks, though, the odds go way down that Entocort will ever prove to be beneficial.
For some people, the improvement is gradual, while for others, overnight, D turns into what we refer to as a "Norman", (that name was originally created by a typo, years ago), worthy of a blue ribbon, (if there were contests for such things). LOL.
Tex
I agree with Joe - it takes a week or so for most people to see results. A few people see results in just a day or so, while it takes others 6 to 8 weeks to see significant improvement. If improvement hasn't been experienced by 6 to 8 weeks, though, the odds go way down that Entocort will ever prove to be beneficial.
For some people, the improvement is gradual, while for others, overnight, D turns into what we refer to as a "Norman", (that name was originally created by a typo, years ago), worthy of a blue ribbon, (if there were contests for such things). LOL.
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.