I need some advice please....
Since Rick started on the entocort a month ago, he has not improved at all, we have been GF for about 3 months, and SF the same amount of time. But we just got the Enterolab results back and now we are going to add DF,EF,YF to the mix. He has only been off of those for about 1.5 weeks, but is still not seeing any improvement in symptoms. Do we just need to be a little more patient, or should something else come out of his diet? His diet is almost made up entirely of beef,pork( from our ranch, so it should be okay ), potatoes, tomatos,peppers,onions, GF spices and a small amount of brown rice. He does still drink coffee with unrefined sugar and still uses smokeless tobacco. Any thoughts would be greatly appreciated kids, we just feel like we are spinning our wheels still. Thanks!!!
Carrie
Yet another Question....
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Carrie,
If I remember correctly, Rick has double DQ-1 genes, which implies that he is likely to have numerous intolerances. You can probably get a pretty good idea of additional items to try withholding from his diet by looking at the items that Polly lists under her avatar, (since she also has double DQ-1 genes). Gloria also has the same genes, so you might check her list of intolerances, also.
For example, tomatoes are highly suspect, especially since they are members of the nightshade family, as are all chilies. Also, some people have problems with onions, (at least until their gut has a year or two to heal). The only vegetables that I was able to eat without problems for a couple of years were well-cooked green beans and broccoli, and I didn't eat them very often. I like peppers and onions also, (and now I can eat them without any problems), but I did without them for about three years, so that my gut could heal. IOW, I pretty much lived on meat, (mostly pork, because beef caused me to have mild to moderate reactions), eggs, potatoes, and rice. I also avoided corn and all it's derivatives for several years, but I can eat it now without any problems.
I also had to cut out all sugar, (except for maple sugar), because in my case, at least, I believe that sugar is what initially caused my Leaky Gut Syndrome, (LGS), and as long as LGS is active, the MC is almost certain to remain active. I'm not sure why I didn't react to maple sugar, but Shirley and Polly brought that to my attention, so it was the only type of sugar I ever used for a while.
The "experts" recommend cutting out all secretagogues, (which includes caffeine, of course), but I don't recall anyone on this board ever mentioning that caffeine ever actually made their MC worse. I think that the reason why the medical "experts" advise against caffeine, is because MC often causes secretory diarrhea, and so they just assume that secretagogues will make the diarrhea problem worse, but that's probably an example of a little education being a bad thing, because secretgagogues affect the endocrine glands, which have very little effect, (probably virtually no practical effect), on the reverse-osmosis action of the intestines that results in secretory diarrhea. It's a completely different mechanism. Of course, coffee works much like a laxative for many people, (myself included), but that's true whether they have MC or not. IOW, I would be more suspicious of the sugar, than the coffee, in Rick's case. Many board members drink tea, which seems to be helpful, and most teas contains caffeine also, of course.
Believe it or not, nicotine is protective of MC, (meaning it can be beneficial). Many people, (including several board members), have triggered MC, by stopping a long-term smoking habit. That doesn't mean that someone should begin smoking, or smoke more, (or use smokeless tobacco, or whatever), hoping that it will help them to achieve remission, (because doing so is not likely to show a beneficial result), but it works in reverse - IOW, stopping the use of tobacco can definitely trigger MC.
I didn't give up cigars while my gut was healing, (not even when I broke an arm, and the doc in the emergency room who set it, spied the cigars in my pocket and commented that I would have to give them up or my arm would take longer to heal - I seriously doubt that it took more than about ten minutes longer to heal. LOL).
My personal opinion is that it probably takes longer for people with double DQ-1 genes to achieve remission, and, of course they have to use a much more restrictive diet. I know it seems as though there's no end to it, but with perseverance, one of these days he'll get his life back. You can count on it - it's just tough to predict when.
Tex
If I remember correctly, Rick has double DQ-1 genes, which implies that he is likely to have numerous intolerances. You can probably get a pretty good idea of additional items to try withholding from his diet by looking at the items that Polly lists under her avatar, (since she also has double DQ-1 genes). Gloria also has the same genes, so you might check her list of intolerances, also.
For example, tomatoes are highly suspect, especially since they are members of the nightshade family, as are all chilies. Also, some people have problems with onions, (at least until their gut has a year or two to heal). The only vegetables that I was able to eat without problems for a couple of years were well-cooked green beans and broccoli, and I didn't eat them very often. I like peppers and onions also, (and now I can eat them without any problems), but I did without them for about three years, so that my gut could heal. IOW, I pretty much lived on meat, (mostly pork, because beef caused me to have mild to moderate reactions), eggs, potatoes, and rice. I also avoided corn and all it's derivatives for several years, but I can eat it now without any problems.
I also had to cut out all sugar, (except for maple sugar), because in my case, at least, I believe that sugar is what initially caused my Leaky Gut Syndrome, (LGS), and as long as LGS is active, the MC is almost certain to remain active. I'm not sure why I didn't react to maple sugar, but Shirley and Polly brought that to my attention, so it was the only type of sugar I ever used for a while.
The "experts" recommend cutting out all secretagogues, (which includes caffeine, of course), but I don't recall anyone on this board ever mentioning that caffeine ever actually made their MC worse. I think that the reason why the medical "experts" advise against caffeine, is because MC often causes secretory diarrhea, and so they just assume that secretagogues will make the diarrhea problem worse, but that's probably an example of a little education being a bad thing, because secretgagogues affect the endocrine glands, which have very little effect, (probably virtually no practical effect), on the reverse-osmosis action of the intestines that results in secretory diarrhea. It's a completely different mechanism. Of course, coffee works much like a laxative for many people, (myself included), but that's true whether they have MC or not. IOW, I would be more suspicious of the sugar, than the coffee, in Rick's case. Many board members drink tea, which seems to be helpful, and most teas contains caffeine also, of course.
Believe it or not, nicotine is protective of MC, (meaning it can be beneficial). Many people, (including several board members), have triggered MC, by stopping a long-term smoking habit. That doesn't mean that someone should begin smoking, or smoke more, (or use smokeless tobacco, or whatever), hoping that it will help them to achieve remission, (because doing so is not likely to show a beneficial result), but it works in reverse - IOW, stopping the use of tobacco can definitely trigger MC.
I didn't give up cigars while my gut was healing, (not even when I broke an arm, and the doc in the emergency room who set it, spied the cigars in my pocket and commented that I would have to give them up or my arm would take longer to heal - I seriously doubt that it took more than about ten minutes longer to heal. LOL).
My personal opinion is that it probably takes longer for people with double DQ-1 genes to achieve remission, and, of course they have to use a much more restrictive diet. I know it seems as though there's no end to it, but with perseverance, one of these days he'll get his life back. You can count on it - it's just tough to predict when.
Tex
Hi Carrie!
Another double DQ1 here! I agree with what Tex has said. Maybe discontinue the eggs and peppers for now. Foods that I have no problem with include sweet potatoes, carrots, squash of any kind, and green veggies.......all cooked. I have never had any problem with coffee. Also, In addition to the intolerances listed under my avatar, I need to add eggs.
Is the brown rice fortiified? If so, try switching to non-fortified. Fortified rices have gluten - barley malt is used to make the vitamins stick to the rice.
I think you need much more time. It took me almost 9 months of diet to see a formed BM! Good luck!
Love,
Polly
Another double DQ1 here! I agree with what Tex has said. Maybe discontinue the eggs and peppers for now. Foods that I have no problem with include sweet potatoes, carrots, squash of any kind, and green veggies.......all cooked. I have never had any problem with coffee. Also, In addition to the intolerances listed under my avatar, I need to add eggs.
Is the brown rice fortiified? If so, try switching to non-fortified. Fortified rices have gluten - barley malt is used to make the vitamins stick to the rice.
I think you need much more time. It took me almost 9 months of diet to see a formed BM! Good luck!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Carrie,
My doctor told me that while i am in a flare i should avoid fresh fruits and raw veggies (Cooked squishy veggies and canned fruits are ok), dairy and beef (i guess beef can be a bit trying on the intestines to digest). I have also found that when i am in a flare i can't drink my coffee. It is hard to find foods you can tolerate when in a flare. Does he feel the Entocort is working at all? I found it did not work for me and when i switched to Prednisone it worked wonders. I am currently tapering my pred dose and will be adding Asacol back in as a maintenance drug next week.
Hope he is feeling better soon!
My doctor told me that while i am in a flare i should avoid fresh fruits and raw veggies (Cooked squishy veggies and canned fruits are ok), dairy and beef (i guess beef can be a bit trying on the intestines to digest). I have also found that when i am in a flare i can't drink my coffee. It is hard to find foods you can tolerate when in a flare. Does he feel the Entocort is working at all? I found it did not work for me and when i switched to Prednisone it worked wonders. I am currently tapering my pred dose and will be adding Asacol back in as a maintenance drug next week.
Hope he is feeling better soon!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Thanks everyone for the support and info, I really appreciate it. Been feeling a little blue about Rick not showing any improvement, but we figured that there were just more foods that needed to come out of our diet. ( I have gone GF,SF,EF,YF, also, will not eat any of it in our house that might cross contaminate Rick's food ) We will take the additional foods out and just keep plugging along til we get it right. I will be gleaning through Dee's recipes so we don't starve.... 
Guess this is all the fun of having a husband that's a member of the double DQ-1 gene club. 
Thanks again, you will never know how much you all mean to me, without you, I would be completly lost in dealing with all this.
Hugs,
Carrie
PS: Do you think that Rick should talk to our beloved family doc about adding something like Asacol to the entocort to see if that helps? Or do they mix those drugs? Also, didn't I remember something about that drug and people with dairy problems?
Guess this is all the fun of having a husband that's a member of the double DQ-1 gene club. Thanks again, you will never know how much you all mean to me, without you, I would be completly lost in dealing with all this.
Hugs,
Carrie
PS: Do you think that Rick should talk to our beloved family doc about adding something like Asacol to the entocort to see if that helps? Or do they mix those drugs? Also, didn't I remember something about that drug and people with dairy problems?
Hi Carrie,
You could talk to your doctor about it, but the way my doctor said it should work is to have the Entocort (or Prednisone in my case) get the flare into remission state first and then add the maintenance drug along with it and go from there until you can wean off the steroid. I have heard that Asacol does have dairy in it, however i was able to take it with no problems. I think another good one to check is either Pentasa or a new one called Lialda which should be just as good as the Asacol.
You could talk to your doctor about it, but the way my doctor said it should work is to have the Entocort (or Prednisone in my case) get the flare into remission state first and then add the maintenance drug along with it and go from there until you can wean off the steroid. I have heard that Asacol does have dairy in it, however i was able to take it with no problems. I think another good one to check is either Pentasa or a new one called Lialda which should be just as good as the Asacol.
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Carrie,
Yes, Asacol does contain a dairy ingredient, and we often wonder if that's the reason why some people get no benefit from it, and we're even more suspicious of it when someone has an adverse reaction to it, but I'm not aware of any research trials that might shed some light on the matter.
I don't recall seeing any statistics on the efficacy of Asacol as related to the treatment of MC, but I suspect that it is most useful for the "easiest" cases, (most of which never show up on this board, of course), and I don't think that the overall success rate is very high. However, for those who find it helpful, Asacol is a very useful med, with minimal risks of any serious, long-term side effects. I would make a WAEG that it has less than half the initial success rate of Entocort, but, of course, I could be wrong. As a maintenance medication, though, it does quite well.
If you want to consider trying a "high-powered" medication regimen, I "Googled" for "entocort and asacol used together for inflammatory bowel disease", and came up with this:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794
Of course, Bob didn't have much luck with the Asacol, but he had one of the most spectacular recoveries of any member here, that I can recall.
If you would like to read what 208 IBD patients have to say about Asacol, consider this:
http://www.askapatient.com/viewrating.a ... ame=ASACOL
If you read all or most of those comments, I would love to see your opinon on Asacol for IBDs, based on all the patient insight offered there. I've wanted to do that for some time, but never seem to have the time, or the perseverance to force myself to wade through all that information.
Tex
P S Hmmmmm. After reading a few of the comments on that "askapatient" site, I may have been out of line with my remark about Asacol having "minimal risks of any serious, long-term side effects". Death is a pretty serious long-term side effect.
P P S What Erin and Shirley mentioned is certainly on the money. I agree that Pentasa may be a better choice than Asacol. It works by means of a different mechanism, even though it is in the same class of drugs as Asacol.
Yes, Asacol does contain a dairy ingredient, and we often wonder if that's the reason why some people get no benefit from it, and we're even more suspicious of it when someone has an adverse reaction to it, but I'm not aware of any research trials that might shed some light on the matter.
I don't recall seeing any statistics on the efficacy of Asacol as related to the treatment of MC, but I suspect that it is most useful for the "easiest" cases, (most of which never show up on this board, of course), and I don't think that the overall success rate is very high. However, for those who find it helpful, Asacol is a very useful med, with minimal risks of any serious, long-term side effects. I would make a WAEG that it has less than half the initial success rate of Entocort, but, of course, I could be wrong. As a maintenance medication, though, it does quite well.
If you want to consider trying a "high-powered" medication regimen, I "Googled" for "entocort and asacol used together for inflammatory bowel disease", and came up with this:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794
Of course, Bob didn't have much luck with the Asacol, but he had one of the most spectacular recoveries of any member here, that I can recall.
If you would like to read what 208 IBD patients have to say about Asacol, consider this:
http://www.askapatient.com/viewrating.a ... ame=ASACOL
If you read all or most of those comments, I would love to see your opinon on Asacol for IBDs, based on all the patient insight offered there. I've wanted to do that for some time, but never seem to have the time, or the perseverance to force myself to wade through all that information.
Tex
P S Hmmmmm. After reading a few of the comments on that "askapatient" site, I may have been out of line with my remark about Asacol having "minimal risks of any serious, long-term side effects". Death is a pretty serious long-term side effect.
P P S What Erin and Shirley mentioned is certainly on the money. I agree that Pentasa may be a better choice than Asacol. It works by means of a different mechanism, even though it is in the same class of drugs as Asacol.
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 took Asacol right along with the Pred and then the Entocort. Asacol does have dairy.
My doctor's plan was for me to take the Pred then wean off and leave the Asacol for maintenance. Had a glitch weaning off the Pred (kept getting low fever and body aches & such) so he put me on Entocort (tapering up) & Pred (tapering down) until I was only on Entocort. Then I had no problem weaning off the Entocort when the time came. All that time I was also taking Asacol, and still am.
I wish I had some good advice for you and Rick. I sure hope he sees some improvement soon.
Love, Shirley
My doctor's plan was for me to take the Pred then wean off and leave the Asacol for maintenance. Had a glitch weaning off the Pred (kept getting low fever and body aches & such) so he put me on Entocort (tapering up) & Pred (tapering down) until I was only on Entocort. Then I had no problem weaning off the Entocort when the time came. All that time I was also taking Asacol, and still am.
I wish I had some good advice for you and Rick. I sure hope he sees some improvement soon.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
I'm more than a little worried about Rick taking the Asacol, not only for the side effects that it may have (death in my book is a MAJOR unwanted side effect ) 
My main concern is the dairy in it, since we know from the Enterolab testing that dairy is a major no no, that is one ingredient I would like to stay away from.
I will go into research mode about the Pentasa and see where that leads, thanks for giving me some direction guys, I soooo love you all.
Hugs,
Carrie
My main concern is the dairy in it, since we know from the Enterolab testing that dairy is a major no no, that is one ingredient I would like to stay away from.I will go into research mode about the Pentasa and see where that leads, thanks for giving me some direction guys, I soooo love you all.
Hugs,
Carrie
