I'm too superstitious to put this in the "member success story" thread.
After relapsing following my course of Budesonide, and failing to convince my GI doc that diet could be a factor, I did a course of Uceris (to avoid nasty side effects of the Enterocort). The nice thing about Uceris is it doesn't *really* mask the dietary issues like Budesonide does. On the B I could eat anything (no gluten, as a celiac I'm not that dumb to try) - but dairy, veggies, anything seemed fine. On Uceris, I tried milk and immediately got diarrhea, but nothing as bad as myself without any drugs. On Uceris, bad foods gave me a warning shot, but not 10 trips to the toilet, only 2-3.
After eliminating nuts, fresh veggies, milk, eggs, beans, I achieved remission on Uceris. Then added nuts (ok!), veg (OK in moderation), eggs (OK, I think?) and milk (NO!). I still get too much gas from beans to eat them, but not sure that's related to anything but the fact that they're beans.
I'm now on a taper of Uceris every other day. Still steering clear of dairy, and so far, so good. Fingers crossed!
My question now is: if I have no symptoms, does that mean the changes they detect on the biopsy to diagnose MC are gone? And if they are, will I ever be able to have dairy again? I can do with out it, although I do miss cheese, and ice cream.... but not that much. I just wonder if the whole scale destruction of my small intestine thanks to celiac will eventually heal up, allowing the dairy to be better digested before it gets to the colon and makes havoc?
Thanks to all for posting on this board, for being so open with such a sensitive topic, and allowing those of us who share the ailment to find help where idiot doctors fail absolutely.
Possible success story
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Possible success story
Celiac disease - diagnosed 10/2013
LC - diagnosed 5/2014
LC - diagnosed 5/2014
Hi,
Congratulations on your successes, and may you continue to improve until your health is better than it was before your symptoms began.
The intestines heal surprisingly slowly. Our age determines the maximum limit of the rate at which our digestive system heals. Kids typically heal (that is, biopsies of the mucosal tissue of their intestines returns to normal) within about a year after they make the necessary diet changes. But it takes adults longer, typically 3–5 years, and some of us never completely heal (though we usually get close enough for all practical purposes). That's why we are usually able to reach remission from symptoms within roughly 6 months to a year, but it takes (on the average) about 2 years before we heal sufficiently that we feel as though we truly have our life back, and in many cases, we actually feel better than we have felt in roughly 10–20 years.
Though there are exceptions, in most cases it seems to take about 3–5 years before our diagnostic markers fall enough that they are no longer diagnostic of MC. And it typically takes adults 5–10 years before their mucosal cellular histology completely returns to normal (that is, lymphocyte count falls to only 3–5 per high-power field under the microscope for LC patients, and collagen band thickness returns to below 10 microns for CC patients).
Regarding dairy products: Though most of us are sensitive to casein (the main protein in all dairy products), roughly 25–30 % of us are not. However, everyone (and I do mean everyone, even people who do not have MC or any other IBD) is intolerant of lactose (the primary sugar in milk) whenever they have enteritis (intestinal inflammation). This even occurs with the flu and some other viruses. When our small intestine is inflamed, it is unable to produce sufficient lactase enzyme to allow the digestion of lactose, thus the gas, bloating, and diarrhea whenever we try to eat a dairy product while our gut is inflamed. The ability to produce other enzymes is also lost as the inflammation progresses, and this causes the poor digestion of many other carbs as most of us have discovered. So it's possible that you may be reacting to lactose, and not casein.
As healing of the gut progresses, we slowly recover the ability to produce those enzymes again. The production of each respective enzyme is lost in a predetermined hierarchy, and likewise, when the ability to resume production returns, the ability to produce the enzymes is restored in reverse order. IOW, since lactase is the first enzyme lost, it is also the last to be restored. Therefore, if you are not sensitive to casein, then after sufficient healing occurs, you should be able to reintroduce dairy products into your diet (slowly at first, to allow your enzyme production to adjust to the changes). If you are like most of us though (sensitive to casein), then unfortunately your sensitivity to all dairy products will be permanent.
You're very welcome, and I hope this is helpful,
Tex
Congratulations on your successes, and may you continue to improve until your health is better than it was before your symptoms began.
The intestines heal surprisingly slowly. Our age determines the maximum limit of the rate at which our digestive system heals. Kids typically heal (that is, biopsies of the mucosal tissue of their intestines returns to normal) within about a year after they make the necessary diet changes. But it takes adults longer, typically 3–5 years, and some of us never completely heal (though we usually get close enough for all practical purposes). That's why we are usually able to reach remission from symptoms within roughly 6 months to a year, but it takes (on the average) about 2 years before we heal sufficiently that we feel as though we truly have our life back, and in many cases, we actually feel better than we have felt in roughly 10–20 years.
Though there are exceptions, in most cases it seems to take about 3–5 years before our diagnostic markers fall enough that they are no longer diagnostic of MC. And it typically takes adults 5–10 years before their mucosal cellular histology completely returns to normal (that is, lymphocyte count falls to only 3–5 per high-power field under the microscope for LC patients, and collagen band thickness returns to below 10 microns for CC patients).
Regarding dairy products: Though most of us are sensitive to casein (the main protein in all dairy products), roughly 25–30 % of us are not. However, everyone (and I do mean everyone, even people who do not have MC or any other IBD) is intolerant of lactose (the primary sugar in milk) whenever they have enteritis (intestinal inflammation). This even occurs with the flu and some other viruses. When our small intestine is inflamed, it is unable to produce sufficient lactase enzyme to allow the digestion of lactose, thus the gas, bloating, and diarrhea whenever we try to eat a dairy product while our gut is inflamed. The ability to produce other enzymes is also lost as the inflammation progresses, and this causes the poor digestion of many other carbs as most of us have discovered. So it's possible that you may be reacting to lactose, and not casein.
As healing of the gut progresses, we slowly recover the ability to produce those enzymes again. The production of each respective enzyme is lost in a predetermined hierarchy, and likewise, when the ability to resume production returns, the ability to produce the enzymes is restored in reverse order. IOW, since lactase is the first enzyme lost, it is also the last to be restored. Therefore, if you are not sensitive to casein, then after sufficient healing occurs, you should be able to reintroduce dairy products into your diet (slowly at first, to allow your enzyme production to adjust to the changes). If you are like most of us though (sensitive to casein), then unfortunately your sensitivity to all dairy products will be permanent.
You're very welcome, and I hope 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 am pretty sure most of us miss cheese, icecream and all the other yummy things that contain dairy!!
Once there is good healing, a good system is to figure out what are your 'sometimes' foods. these are ingredients that you can have small amounts, here and there with no major issues. For me, Diary is one of them.
I dont have it frequently, mostly I save it as a treat when socialising...
long term, as we age, our ability to heal decreases. The more flares and inflammation episodes we have, the harder it is to heal.
As dairy tends to be highly inflammatory, it is more likely to cause issues than other ingredients.
Also- if we have any deficiencies, like Vit d3, Magnesium, Vit C etc the ability to cope and heal from ingesting dairy also is affected.
I would be cautious about how much dairy you have, and how often. As tex mentions above, if lactose is the main issue, then there are tablets you can get that help the body digest the lactose, this may prevent major inflammation.
Once there is good healing, a good system is to figure out what are your 'sometimes' foods. these are ingredients that you can have small amounts, here and there with no major issues. For me, Diary is one of them.
I dont have it frequently, mostly I save it as a treat when socialising...
long term, as we age, our ability to heal decreases. The more flares and inflammation episodes we have, the harder it is to heal.
As dairy tends to be highly inflammatory, it is more likely to cause issues than other ingredients.
Also- if we have any deficiencies, like Vit d3, Magnesium, Vit C etc the ability to cope and heal from ingesting dairy also is affected.
I would be cautious about how much dairy you have, and how often. As tex mentions above, if lactose is the main issue, then there are tablets you can get that help the body digest the lactose, this may prevent major inflammation.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes wrote:I am pretty sure most of us miss cheese, icecream and all the other yummy things that contain dairy!!
Yep. Ice cream used to be a staple for me. I'm sure that Bluebell Creameries noticed the drop in sales when I decided to cut out casein.
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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DH and I are still having the Bluebell fruit bars each evening...even though it is freezing cold here.tex wrote:
Yep. Ice cream used to be a staple for me. I'm sure that Bluebell Creameries noticed the drop in sales when I decided to cut out casein.
Tex
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Same here.DH and I are still having the Bluebell fruit bars each evening...even though it is freezing cold here.
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.
-
Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
You're right on, Gabes. I miss cheese 
almost more than ice cream. I've found I can tolerate a little Parmesan once in a while and actually had a GF pizza without any issues. For Thanksgiving I made my favorite chocolate cheese cake and ate a small piece, covered with whipped cream, four days in a row. By the fourth day, my equilibrium was off and I felt just plain lousy, although there was no D. No more cheesecake. The pound and a half of cheese in the cake, combined with whipped heavy cream and chocolate was just too much.
Sheila W
almost more than ice cream. I've found I can tolerate a little Parmesan once in a while and actually had a GF pizza without any issues. For Thanksgiving I made my favorite chocolate cheese cake and ate a small piece, covered with whipped cream, four days in a row. By the fourth day, my equilibrium was off and I felt just plain lousy, although there was no D. No more cheesecake. The pound and a half of cheese in the cake, combined with whipped heavy cream and chocolate was just too much. Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Update
So all was ticking along nicely until I had a server error and ended up with gluten in a dish I ordered, unbeknownst to me until that night when my belly sounded like an approaching thunderstorm, and I was rocketing out of bed to dash to the loo.
I'm completely off the Uceris now, but recovery from that incident has been very slow. I had a follow up with the doctor and can confirm, their heads are made of the hardest material on earth!
Me: "So, if the effects of gluten are indistinguishable from the symptoms of MC, how do I know what's causing the problems?"
Dr: "You won't"
Me: "But doesn't that mean that maybe diet causes the MC? If gluten makes it flare up, why not other food?"
Dr: "There is no scientific evidence that gluten causes MC"
Me: "but... wait... nevermind."
I'm completely off the Uceris now, but recovery from that incident has been very slow. I had a follow up with the doctor and can confirm, their heads are made of the hardest material on earth!
Me: "So, if the effects of gluten are indistinguishable from the symptoms of MC, how do I know what's causing the problems?"
Dr: "You won't"
Me: "But doesn't that mean that maybe diet causes the MC? If gluten makes it flare up, why not other food?"
Dr: "There is no scientific evidence that gluten causes MC"
Me: "but... wait... nevermind."
Celiac disease - diagnosed 10/2013
LC - diagnosed 5/2014
LC - diagnosed 5/2014
Hi,
I'm sorry that you were accidentally glutened, but thanks for the confirmation about the hardness of GI doc skulls.
I hope that your digestive system recovers soon.
Tex
I'm sorry that you were accidentally glutened, but thanks for the confirmation about the hardness of GI doc skulls.
I hope that your digestive system recovers soon.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sorry you got glutened, albeit, the reaction and slow recovery time is an indicator that there is quite a bit of healing still to happen - and timely reminder not to rush any attempts to try dairy....
Happy healing
Happy healing
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama