Hi everyone. I am new here and am so glad I found you. I was d with mc last June and I am not responding to any of the meds. I have been gluten free for about 5 years (thought I had celiac) as well as lactose free. I have been on Asacol, Lomitol and Welchol and nothing is working. I am in the bathroom 15 to 20 times a day. My Dr. is sending me to Mayo Clinic in February to see is there is anything else going on that he may have missed in my colonoscopy. I am so frustrated. Thanks for listening.
Rose
New Here
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rose and 
to our family!
You have really had a rough time. Bummer. But as you will see as you browse this site, you WILL get better and get your life back. I have no doubt that you will find the best path to health for you.
My immediate thought is that you might try going dairy-free. Dairy is the second most-common intolerance for MCers after gluten. (Soy is third.) At present you are lactose-free, which means that you are avoiding the milk SUGAR, lactose. However, to be dairy-free you must avoid milk PROTEIN, casein. This means that you cannot eat ANY dairy products - no cheese, yogurt, ice cream, butter, etc. Actually dairy gives me far worse diarrhea than gluten does - I get "battery acid diarrhea" within 2 hours of eating even a teeny amount of dairy.
One of the best meds for MC now is Entocort. It is a steroid that is not absorbed systemically to any degree. About 90% stays in the gut. You might ask your doc if you can try it.
I don't want to rain on your parade, but please don't get your hopes up too much that you will get the answers from conventional medicine docs. Most know nothing about food intolerances. Here we have learned much more from each other about what works and what doesn't than from our docs.
Good luck! And ask any questions you wish - nothing can shock or disgust us.
Love,
Polly
to our family!You have really had a rough time. Bummer. But as you will see as you browse this site, you WILL get better and get your life back. I have no doubt that you will find the best path to health for you.
My immediate thought is that you might try going dairy-free. Dairy is the second most-common intolerance for MCers after gluten. (Soy is third.) At present you are lactose-free, which means that you are avoiding the milk SUGAR, lactose. However, to be dairy-free you must avoid milk PROTEIN, casein. This means that you cannot eat ANY dairy products - no cheese, yogurt, ice cream, butter, etc. Actually dairy gives me far worse diarrhea than gluten does - I get "battery acid diarrhea" within 2 hours of eating even a teeny amount of dairy.
One of the best meds for MC now is Entocort. It is a steroid that is not absorbed systemically to any degree. About 90% stays in the gut. You might ask your doc if you can try it.
I don't want to rain on your parade, but please don't get your hopes up too much that you will get the answers from conventional medicine docs. Most know nothing about food intolerances. Here we have learned much more from each other about what works and what doesn't than from our docs.
Good luck! And ask any questions you wish - nothing can shock or disgust us.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Rose,
Welcome to our internet family. I totally agree with Polly. If you've been on the GF diet for 5 years without relief, then obviously, you have some other intolerances, (most of us have).
If you've been on a strict GF diet for that long, then you should respond to the removal of any other intolerances relatively quickly. Probably you should see improvement in a matter of a week or less, rather than months.
Thinking back, I believe that we have one or two members who went the Mayo route, due to difficult cases, but I don't recall that they were able to gain any benefits there. Maybe they will respond to your post, and refresh my memory. The problem with the doctors at the Mayo Clinic, if I'm not confusing them with some other institution, is that, like most other doctors, they do not believe that diet has any bearing on MC, only on fully-developed celiac cases, as Polly has already mentioned. It's very unfortunate that most doctors have that attitude, because common sense should make it clear that someone does not go from "normal" to celiac disease, overnight. Rather, a lot of time passes while they are in a "transition zone", where they are accruing damage to their intestines, and developing increasing intolerance to gluten, but the classic celiac blood tests will not detect the disease in that "transition zone".
Anyway, welcome aboard, and please don't hesitate to ask any questions that come to mind. We have a very good record for achieving remission, among the members of this board.
Tex (Wayne)
Welcome to our internet family. I totally agree with Polly. If you've been on the GF diet for 5 years without relief, then obviously, you have some other intolerances, (most of us have).
If you've been on a strict GF diet for that long, then you should respond to the removal of any other intolerances relatively quickly. Probably you should see improvement in a matter of a week or less, rather than months.
Thinking back, I believe that we have one or two members who went the Mayo route, due to difficult cases, but I don't recall that they were able to gain any benefits there. Maybe they will respond to your post, and refresh my memory. The problem with the doctors at the Mayo Clinic, if I'm not confusing them with some other institution, is that, like most other doctors, they do not believe that diet has any bearing on MC, only on fully-developed celiac cases, as Polly has already mentioned. It's very unfortunate that most doctors have that attitude, because common sense should make it clear that someone does not go from "normal" to celiac disease, overnight. Rather, a lot of time passes while they are in a "transition zone", where they are accruing damage to their intestines, and developing increasing intolerance to gluten, but the classic celiac blood tests will not detect the disease in that "transition zone".
Anyway, welcome aboard, and please don't hesitate to ask any questions that come to mind. We have a very good record for achieving remission, among the members of this board.
Tex (Wayne)
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.
Rose, so glad you found us.First, I want to tell you that Polly IS a doctor, a pediatrician.
If going completely dairy free doesn't help then suspect soy next.
Please read as much as you can on this site and at www.enterolab.com Your docs will "poo poo" it, stool testing, (pun intended) but it is valid as I have found out for myself.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Sorry you have had such a hard time. One thought, my DH, who has MC, was put back on Lomotil, only to get worse after taking it..... After checking with the Pharmacy who gave us the med's and they assured us that Lomotil did not contain any milk products I called some other pharmacies in the area. Only to find out that ALL Lomotil products, either brand name or generic contain lactose. Since he had tested positive for casein at Enterolab, there was the problem. He went off the offending Lomotil and did improve some....
Hope you find some answers to help you.
Hugs,
Carrie
Hi Rose,
Welcome to the board.
It sounds like you've had a long struggle with this disease. You've come to the right place for help and support. Feel free to ask any questions - nothing shocks us.
If you haven't tried Entocort, I would strongly recommend that you consider it. While it doesn't work for everyone, it does work for the majority of us. It has been a lifesaver for me.
Gloria
Welcome to the board.
It sounds like you've had a long struggle with this disease. You've come to the right place for help and support. Feel free to ask any questions - nothing shocks us. If you haven't tried Entocort, I would strongly recommend that you consider it. While it doesn't work for everyone, it does work for the majority of us. It has been a lifesaver for me.
Gloria
You never know what you can do until you have to do it.
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome to the Family Rose!
You have already got great advice from those posting prior to me and the best thing I can say is that the percentage of people in remission here from diet alone is far more than any one GI doc - or a dozen of them - would see in a lifetime. If they only recognized that diet works, their patients would be much better off.
Browse the site and take it in because this is where the majority of valid information on MC/CC lies in the world.
Again Welcome, Maggie
You have already got great advice from those posting prior to me and the best thing I can say is that the percentage of people in remission here from diet alone is far more than any one GI doc - or a dozen of them - would see in a lifetime. If they only recognized that diet works, their patients would be much better off.
Browse the site and take it in because this is where the majority of valid information on MC/CC lies in the world.
Again Welcome, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Welcome, Rose. I'm so glad you found us. Many of us, including me, have had long roads to diagnosis and/or recovery, so you will find a lot of understanding here. I agree with others who said that you probably have additional intolerances you're not aware of, if you haven't responded to a GF diet in that length of time. If you've already tried Entocort and it didn't work, you're not alone--it didn't work for me, either.
Looking forward to getting to know you,
Courtney
Looking forward to getting to know you,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Thank you all for the very warm welcome and all of the advice. I was feeling so isolated and I am so happy that I found this wonderful group of people who really understand what its like and what I am going through.
My family tries to understand and my kids are real troopers. They know that when mom's stomach starts to gurgle that I need to find a bathroom quick (my husband calls it the big flush). My husband, God Bless him, he really us so understanding.
I have been off dairy for over two years. The usually having to go to the bathroom up to 4 times at night (the worst is waking up with a surprise - which happens quite often). Does anyone else have leaks at night?
I am going to look into the Entrocort and I also think that going to Mayo is a waste of time and money, but my DH wants to make sure that nothing is damaged from all the d.
Rose
My family tries to understand and my kids are real troopers. They know that when mom's stomach starts to gurgle that I need to find a bathroom quick (my husband calls it the big flush). My husband, God Bless him, he really us so understanding.
I have been off dairy for over two years. The usually having to go to the bathroom up to 4 times at night (the worst is waking up with a surprise - which happens quite often). Does anyone else have leaks at night?
I am going to look into the Entrocort and I also think that going to Mayo is a waste of time and money, but my DH wants to make sure that nothing is damaged from all the d.
Rose
Rose,
So sorry you have been going through this. There have been a lot of success stories after people come here. Unfortunately I am not one of them, yet. I have found recently with Carrie's help that not only does Lomotil have lactose but generic imodium and prescription imodium have lactose in them. Imodium AD does not have lactose. That bit of info did help me! I have not responded to prescription meds either and I have a long list from Asacol to Entocort, Prednisone and Imuran and a lot in between. Sometimes it is comforting knowing you are not alone.
Pat
So sorry you have been going through this. There have been a lot of success stories after people come here. Unfortunately I am not one of them, yet. I have found recently with Carrie's help that not only does Lomotil have lactose but generic imodium and prescription imodium have lactose in them. Imodium AD does not have lactose. That bit of info did help me! I have not responded to prescription meds either and I have a long list from Asacol to Entocort, Prednisone and Imuran and a lot in between. Sometimes it is comforting knowing you are not alone.
Pat
Hi Rose,
Yes, many of us have nighttime D. Mine tends to be at night right before I go to bed and in the morning when I wake up (that's when it's the worst for me). I totally feel your pain when it comes to waking up with surprises! My solution to this has been to find the most giant pads I can (always overnights work for me) and wear one to bed every night. Most of the time, that catches anything that leaks before I can make it to the bathroom. Some members have worn depends to bed, too, to avoid having to wash the sheets in the middle of the night.
Mayo probably is a waste of time and money. Your regular GI can do a colonoscopy/endoscopy w/ biopsy if you need that. Check out www.enterolab.com that Joan posted. Dr. Fine has a test that checks damage to the intestine (I think--somebody help me out here!)
It's wonderful that you have such a supportive family. "The big flush!" Love it! I'm gonna start saying that!
Love,
Courtney
Yes, many of us have nighttime D. Mine tends to be at night right before I go to bed and in the morning when I wake up (that's when it's the worst for me). I totally feel your pain when it comes to waking up with surprises! My solution to this has been to find the most giant pads I can (always overnights work for me) and wear one to bed every night. Most of the time, that catches anything that leaks before I can make it to the bathroom. Some members have worn depends to bed, too, to avoid having to wash the sheets in the middle of the night.
Mayo probably is a waste of time and money. Your regular GI can do a colonoscopy/endoscopy w/ biopsy if you need that. Check out www.enterolab.com that Joan posted. Dr. Fine has a test that checks damage to the intestine (I think--somebody help me out here!)
It's wonderful that you have such a supportive family. "The big flush!" Love it! I'm gonna start saying that!
Love,
Courtney
Hypothyroid 05/05
LC/CC 07/08
Celiac 07/08
LC/CC 07/08
Celiac 07/08
Courtney,
I also have it bad right when I get up and before I go to bed. I just get comfortable and then I have to get up. I wear depends as well (not very sexy, but neither is poop all over you). I tried pads, but my d is so watery, it is like an explosion. Most of the time it feels like I am urinating out of my butt. I read that you can't take Entrocort if you have liver problems (which, of course, I have). I have chronic cholecystistis and elevated enzymes.
Have you done Humira? I do Humira injections for psoriaic arthritis (I know, I am walking autoimmune disaster) and my Gastro says that I am on the same dosage as his Chron's patients. It used to give me a couple of good days, but now when I get the injection it just seems to make it worse and I am living in the bathroom.
Rose
I also have it bad right when I get up and before I go to bed. I just get comfortable and then I have to get up. I wear depends as well (not very sexy, but neither is poop all over you). I tried pads, but my d is so watery, it is like an explosion. Most of the time it feels like I am urinating out of my butt. I read that you can't take Entrocort if you have liver problems (which, of course, I have). I have chronic cholecystistis and elevated enzymes.
Have you done Humira? I do Humira injections for psoriaic arthritis (I know, I am walking autoimmune disaster) and my Gastro says that I am on the same dosage as his Chron's patients. It used to give me a couple of good days, but now when I get the injection it just seems to make it worse and I am living in the bathroom.
Rose
Rose,
The test that Courtney mentioned for checking intestinal damage is called the Stool Test for Intestinal Malabsorption/Intestinal Damage, and it can be found here:
https://www.enterolab.com/StaticPages/F ... absorption
However, if you have been on the GF diet for 5 years, you will almost certainly receive a negative test result, IMO. The reason I feel that way, is because gluten, (and related prolamins), definitely damages the intestines, but to my knowledge, most of the other food intolerances do not. My logic behind that opinion is the fact that no research has documented intestinal damage from any food intolerances, other than the damage caused by gluten, (wheat), hordein, (barley), secalin, (rye), and possibly avenin, (oats).
IOW, if you receive a positive result on that test, it indicates that you are accidentally ingesting sufficient amounts of gluten, to prevent total healing of your intestines. Of course, after 5 years on the diet without resolution of symptoms, it might be a good idea to check out that possibility. Of course, some of the other tests could also be used to confirm whether or not gluten is being accidentally ingested, such as Enterolab's tests for Fecal antigliadin IgA antibodies, or Fecal anti-tissue transglutaminase IgA antibodies.
Tex
The test that Courtney mentioned for checking intestinal damage is called the Stool Test for Intestinal Malabsorption/Intestinal Damage, and it can be found here:
https://www.enterolab.com/StaticPages/F ... absorption
However, if you have been on the GF diet for 5 years, you will almost certainly receive a negative test result, IMO. The reason I feel that way, is because gluten, (and related prolamins), definitely damages the intestines, but to my knowledge, most of the other food intolerances do not. My logic behind that opinion is the fact that no research has documented intestinal damage from any food intolerances, other than the damage caused by gluten, (wheat), hordein, (barley), secalin, (rye), and possibly avenin, (oats).
IOW, if you receive a positive result on that test, it indicates that you are accidentally ingesting sufficient amounts of gluten, to prevent total healing of your intestines. Of course, after 5 years on the diet without resolution of symptoms, it might be a good idea to check out that possibility. Of course, some of the other tests could also be used to confirm whether or not gluten is being accidentally ingested, such as Enterolab's tests for Fecal antigliadin IgA antibodies, or Fecal anti-tissue transglutaminase IgA antibodies.
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.
Rose,
IMO, the anti-tumor necrosis factor drugs, (such as Humira), pose a much greater risk of damage to your liver, (and the rest of your body), than budesonide, (Entocort), ever could.
Basically, the warnings about Entocort, (concerning liver issues), typically look like this:
http://www.umm.edu/altmed/drugs/budesonide-012275.htm
Basically, what happens when liver function is impaired, is that approximately twice the amount of budesonide becomes available systemically, rather than the normal 10% level. IOW, 20% will be absorbed into the bloodstream, but this is no big deal, when compared with corticosteroids such as Prednisone, where virtually all of it is available systemically, in most cases. Here's a reference on that:
On the other hand, there are a lot of websites noting dire consequences from using the anti-TNF drugs, such as Humira, and a lot of sites offering legal services for patients who used those drugs, and had adverse results:
http://www.oshmanlaw.com/pharmaceutical ... icade.html
I had a friend whose doctor talked her into using the anti-TNF drugs to treat her arthritis. She is now in a wheelchair, and none of those meds provide her with any relief any more. She was still walking, too, when she started using those drugs.
Tex
IMO, the anti-tumor necrosis factor drugs, (such as Humira), pose a much greater risk of damage to your liver, (and the rest of your body), than budesonide, (Entocort), ever could.
Basically, the warnings about Entocort, (concerning liver issues), typically look like this:
From this site:Dosage adjustment in hepatic impairment: Monitor closely for signs and symptoms of hypercorticism; dosage reduction may be required.
http://www.umm.edu/altmed/drugs/budesonide-012275.htm
Basically, what happens when liver function is impaired, is that approximately twice the amount of budesonide becomes available systemically, rather than the normal 10% level. IOW, 20% will be absorbed into the bloodstream, but this is no big deal, when compared with corticosteroids such as Prednisone, where virtually all of it is available systemically, in most cases. Here's a reference on that:
http://dailymed.nlm.nih.gov/dailymed/dr ... fm?id=3271Hepatic Insufficiency: Reduced liver function may affect the elimination of corticosteroids. The pharmacokinetics of budesonide were affected by compromised liver function as evidenced by a doubled systemic availability after oral ingestion. The intravenous pharmacokinetics of budesonide were, however, similar in cirrhotic patients and in healthy subjects.
On the other hand, there are a lot of websites noting dire consequences from using the anti-TNF drugs, such as Humira, and a lot of sites offering legal services for patients who used those drugs, and had adverse results:
http://www.oshmanlaw.com/pharmaceutical ... icade.html
I'm not a doctor, and I'm not suggesting that you should use Entocort, but I am suggesting that you should reconsider your use of anti-TNF drugs - they are extremely risky, for many people.Rose wrote:I do Humira injections for psoriaic arthritis (I know, I am walking autoimmune disaster) and my Gastro says that I am on the same dosage as his Chron's patients. It used to give me a couple of good days, but now when I get the injection it just seems to make it worse and I am living in the bathroom.
I had a friend whose doctor talked her into using the anti-TNF drugs to treat her arthritis. She is now in a wheelchair, and none of those meds provide her with any relief any more. She was still walking, too, when she started using those drugs.
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.