Eye Problems Associated with Colitis?
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Eye Problems Associated with Colitis?
Hi, I was diagnosed with microscopic colitis 1 year ago. I went on entocort for 3 months. Everything was normal until last October when the diahrea came back. I went back on entocort in December for another 3 month period. It has come back again full force. The second round of entocort gave me real bad leg cramps. All the entocort really seams to do is mask the problem for me because once I go off of it the problem returns. I just went to an allergist to see if there was a specific food allergy they could find. Nothing. My colonoscopy said I was not gluten intolerant. Now all the sudden I have an eye issue where my vision in my left eye went all red and then foggy. I went to the eye doctor and was diagnosed with Iritis (swelling of the iris). He gave me steroid eye drops and steroid pills which has almost cleared up and yesterday it went into my right eye. He advised me to see an arthritis doc. Someone I know has IBS and Iritis and she said they are connected. My question is has anyone else experienced eye issues with colitis? Also I cant stand the thought of 3 pills a day of entocort for 3 months but maybe 1 a day for a longer period of time. Anyone have better luck doing that? On a side note the eye doc has me on preglizone steroid that has changed things. Normal 1 day and d the next but no 10 times a day. Thanks
Mitch,
I believe you'll be hearing soon from some iritis veterans - if you click on the red words above - 'search the archives of this discussion board' and type in iritis, I think you'll get a great headstart.
It is highly possible that you are gluten intolerant, regardless of what the colonoscopy said. (I'll let someone else opine about whether a colonoscopy can reveal such a thing...) Many, perhaps most of us are not able to eat gluten (and many of our doctors do not find it with the tests they typically use). I'm sorry the Entocort isn't helping, and applaud you for not wanting to mask the symptoms only, but to get to the root cause of the problem. I hope you're soon finding answers and relief.
I just typed in 'iritis gluten' into a search engine - I bet you've done that, too. Lots of hits - the good news being that if you can eliminate whatever your food triggers are, you may solve more than one problem. Gluten intolerance wouldn't pop up on a standard allergy test, because it's a different sort of immune response entirely.
Welcome - finding this board has been of enormous benefit to me, and I wish you the same. I'm currently managing my MC symptoms with diet alone - not perfectly, but I'm pretty new at this. Some use medications as well. I believe many here would agree with your thought that masking symptoms isn't the way to go... but Entocort has enabled many members to get their lives back while figuring out the diet component.
Wishing you good health and recovery,
Sara
I believe you'll be hearing soon from some iritis veterans - if you click on the red words above - 'search the archives of this discussion board' and type in iritis, I think you'll get a great headstart.
It is highly possible that you are gluten intolerant, regardless of what the colonoscopy said. (I'll let someone else opine about whether a colonoscopy can reveal such a thing...) Many, perhaps most of us are not able to eat gluten (and many of our doctors do not find it with the tests they typically use). I'm sorry the Entocort isn't helping, and applaud you for not wanting to mask the symptoms only, but to get to the root cause of the problem. I hope you're soon finding answers and relief.
I just typed in 'iritis gluten' into a search engine - I bet you've done that, too. Lots of hits - the good news being that if you can eliminate whatever your food triggers are, you may solve more than one problem. Gluten intolerance wouldn't pop up on a standard allergy test, because it's a different sort of immune response entirely.
Welcome - finding this board has been of enormous benefit to me, and I wish you the same. I'm currently managing my MC symptoms with diet alone - not perfectly, but I'm pretty new at this. Some use medications as well. I believe many here would agree with your thought that masking symptoms isn't the way to go... but Entocort has enabled many members to get their lives back while figuring out the diet component.
Wishing you good health and recovery,
Sara
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Joefnh
- Rockhopper Penguin
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- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Mitch your right entocort can only mask symptoms which frankly are all meds do anyway.
First keep in mind the blood test for gluten sensitivity aka celiac disease is first an inaccurate test with the number of false positives and negatives. Second it does not show the sensitivities that occur in the gut, only the blood and yes those two sensitivities are differrent.
To answer the question about gluten sensitivity the best way would be through enterolab testing or through an elimination diet on your part. But keep in mind that for the elimination diet to be accurate you need to be off of ALL gluten, wheat etc... And stay off of it for a good 8 weeks. The enterolab testing will let you know in a week or so.
To get rid of the D you need to eliminate which foods are bothering you. Statistically on this board if is almost always gluten, then soy and finally dairy that causes the D
For you to find relief you need to figure out what foods are bothering you and eliminate them 100%, not 95%
Now for the eyes... This is a common problem with IBDs and I tend to get Iritis and uveitis and I know others on the board who get kerititis. Again here eliminating the offending foods will help.
Welcome to the group Mitch, I look forward to your posts
Joe
First keep in mind the blood test for gluten sensitivity aka celiac disease is first an inaccurate test with the number of false positives and negatives. Second it does not show the sensitivities that occur in the gut, only the blood and yes those two sensitivities are differrent.
To answer the question about gluten sensitivity the best way would be through enterolab testing or through an elimination diet on your part. But keep in mind that for the elimination diet to be accurate you need to be off of ALL gluten, wheat etc... And stay off of it for a good 8 weeks. The enterolab testing will let you know in a week or so.
To get rid of the D you need to eliminate which foods are bothering you. Statistically on this board if is almost always gluten, then soy and finally dairy that causes the D
For you to find relief you need to figure out what foods are bothering you and eliminate them 100%, not 95%
Now for the eyes... This is a common problem with IBDs and I tend to get Iritis and uveitis and I know others on the board who get kerititis. Again here eliminating the offending foods will help.
Welcome to the group Mitch, I look forward to your posts
Joe
Joe
Hi Mitch,
Welcome to the board. As Sara and Joe have already mentioned, there is much more to microscopic colitis than meets the eye, (pardon the pun), and there is a lot about it that the medical experts do not understand, (they are slowly learning, and their knowledge of it is improving each year, but they still have a long way to go, to learn how to treat the disease).
Many/most GI specialists still do not understand that food sensitivities cause the inflammation that results in MC, (in fact, many of them will argue that diet has absolutely nothing to do with MC). They are wrong, of course. Many of us here control our symptoms by diet alone, and many of us use a combination of diet and medication, but very few of us are able to control our symptoms by meds alone. The reason for that is due to the fact that food sensitivities cause the inflammation in the first place, and all that the meds can do is to suppress the inflammation. As long as the trigger foods remain in the diet, the inflammation will continue to be generated, and for many of us, the meds cannot overcome the inflammation. Even in cases where it can control the symptoms, as soon as the drugs are discontinued, the MC symptoms return, because the inflammation will always be present, in response to the trigger foods.
Once you get your MC symptoms under control, (and keep them under control - on a permanent basis), you shouldn't have any more problems with those eye issues.
Again, welcome to the board, and please feel free to ask anything.
Tex
Welcome to the board. As Sara and Joe have already mentioned, there is much more to microscopic colitis than meets the eye, (pardon the pun), and there is a lot about it that the medical experts do not understand, (they are slowly learning, and their knowledge of it is improving each year, but they still have a long way to go, to learn how to treat the disease).
Many/most GI specialists still do not understand that food sensitivities cause the inflammation that results in MC, (in fact, many of them will argue that diet has absolutely nothing to do with MC). They are wrong, of course. Many of us here control our symptoms by diet alone, and many of us use a combination of diet and medication, but very few of us are able to control our symptoms by meds alone. The reason for that is due to the fact that food sensitivities cause the inflammation in the first place, and all that the meds can do is to suppress the inflammation. As long as the trigger foods remain in the diet, the inflammation will continue to be generated, and for many of us, the meds cannot overcome the inflammation. Even in cases where it can control the symptoms, as soon as the drugs are discontinued, the MC symptoms return, because the inflammation will always be present, in response to the trigger foods.
Once you get your MC symptoms under control, (and keep them under control - on a permanent basis), you shouldn't have any more problems with those eye issues.
Again, welcome to the board, and please feel free to ask anything.
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.
Hi, yes, I have Iritis. I also got it about a year after I got MC. I have found that it coincides with how bad my tummy is. When I am doing well, my eyes are pretty normal. When my tummy is bad, my eyes get bad, usually one eye at a time, like you. I also get weird stingy things in my eye. I use prednisone drops when it is bad, and Lotemax for everyday use.
As for the entocort, I only take one a day, unless I get sick from something I ate, and then I will take one in the morning and one at night.
Take care,
karen
As for the entocort, I only take one a day, unless I get sick from something I ate, and then I will take one in the morning and one at night.
Take care,
karen
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Lots of hard-won wisdom on this board. Whatever it is, someone has probably experienced it, and it is such a relief to have others who can come alongside.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
WELCOME MITCH! 
I haven't had Iritis, but I have taken Entocort. I echo what everyone else has written. Entocort can suppress symptoms, but if you want to either reduce the dosage or get off of it completely, you need to eliminate the problematic foods in your diet. Many of us have had the Enterolab testing to determine some common food intolerances. That is a good starting point.
We also maintain a food/elimination diary, which we have lovingly named "Winning the Poo," to help us see a pattern between our symptoms and the food we eat. It can be done, and we can help you along the way.
You will find posts here on almost any topic that affects or causes MC. I'm sure you will be reading and learning a lot as you browse the site.
Gloria
I haven't had Iritis, but I have taken Entocort. I echo what everyone else has written. Entocort can suppress symptoms, but if you want to either reduce the dosage or get off of it completely, you need to eliminate the problematic foods in your diet. Many of us have had the Enterolab testing to determine some common food intolerances. That is a good starting point.
We also maintain a food/elimination diary, which we have lovingly named "Winning the Poo," to help us see a pattern between our symptoms and the food we eat. It can be done, and we can help you along the way.
You will find posts here on almost any topic that affects or causes MC. I'm sure you will be reading and learning a lot as you browse the site.
Gloria
You never know what you can do until you have to do it.
Welcome Mitch
After about a year on Entocort AND diet, I am down to one enocort a day plus GF, DF, SF, EF, nightshade and other legume free diet. This, 80% of the time (i.e. except when I goof up on diet) keeps me in remission.
Best wishes in reaching remission, ant
After about a year on Entocort AND diet, I am down to one enocort a day plus GF, DF, SF, EF, nightshade and other legume free diet. This, 80% of the time (i.e. except when I goof up on diet) keeps me in remission.
Best wishes in reaching remission, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Eye Problems Associated with Colitis?
You guys are awesome. When I was on entocort it didn't matter what I eat because everything was normal but now that I am off of it I guess its time to experiment with different foods. I guess I will start going gluten free first and see what happens. Problem is EVERYTHING has gluten, well it seems like. WHAT no beer? I do have another question. Say I go gluten free and things get back to normal and an un-controllable craving for a piece of pizza comes over me. How long might I be paying for that mistake? Thanks again for your time and I will let you know how the gluten free thing works.
Early on, you will probably pay for several days, (or longer). If you stay the course, though, and allow your gut to actually heal, (which usually takes from 1 to 3 or more years), you will find that the reactions become shorter and milder. For most of us who have been in remission for several years or more, a minor slip up means that we might have D for half a day, or in some cases, we might just feel a bit bloated, and maybe achy for a few hours, but not even have any D. If we slip up too often, though, our situation will begin to deteriorate, and we can wind up back at square one, if we're not careful.mitch94 wrote:Say I go gluten free and things get back to normal and an un-controllable craving for a piece of pizza comes over me. How long might I be paying for that mistake?
Good luck with the diet.
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.
That sounds right to me, Tex.
I got 'glutened' in April (despite a lovely chat with the waitress, who spoke to the chef). I was only super-miserable for 2-3 days, but it took 5-6 days to be back to where I'd started from. Of course, I don't have highly scientific measures for "feeling icky" - and hope I don't need to ;)
My MC "crash" that led me to find this group was less than 2 months before. At that time, a modest amount of gluten (and dairy?) put me pretty much in bed (or on the toilet) for 6-7 days.
Of course, mitch94, your mileage may vary according to your total health picture, etc. You're probably younger than I am, which can only help! For me, pizza's not looking so tempting these days.
Tex neglected to mention that there are gluten-free beers - we have some taste testers in this forum. I lost my taste for beer (how did I not notice that alarming symptom?) because it "didn't agree with me" - obviously, I should have gotten the hint sooner about my relationship with cereal grains... they do not love me back.
Perhaps your own brewing project is yet to begin! Hops make a lovely garden plant (my dog, unfortunately, agreed, and ate them right out of the ground).
As others mentioned, Enterolab testing might help you determine where to begin with reinventing your diet. I found it useful even though I had already gone on the "when in doubt, leave it out" theory.
I recommend going for the gold, and eliminating everything at once - but that truly does *not* work for everyone's personal style, cooking habits, and social life. I couldn't bring myself to feel "somewhat" better and still wonder what was going wrong in my diet, so I chucked all grains, all legumes, and dairy at once (and I'm glad, believe it or not). It seems I may be able to add some of those things back in, but for me, recovering my energy and strength was of paramount importance. Of course that's important to everyone, but each of us has to make our own best guess about how to get there. Many people on this list have taken it one food at a time and figured out a path, and others have done something in between.
Hope you're already feeling better, and please keep us posted,
Sara
I got 'glutened' in April (despite a lovely chat with the waitress, who spoke to the chef). I was only super-miserable for 2-3 days, but it took 5-6 days to be back to where I'd started from. Of course, I don't have highly scientific measures for "feeling icky" - and hope I don't need to ;)
My MC "crash" that led me to find this group was less than 2 months before. At that time, a modest amount of gluten (and dairy?) put me pretty much in bed (or on the toilet) for 6-7 days.
Of course, mitch94, your mileage may vary according to your total health picture, etc. You're probably younger than I am, which can only help! For me, pizza's not looking so tempting these days.
Tex neglected to mention that there are gluten-free beers - we have some taste testers in this forum. I lost my taste for beer (how did I not notice that alarming symptom?) because it "didn't agree with me" - obviously, I should have gotten the hint sooner about my relationship with cereal grains... they do not love me back.
Perhaps your own brewing project is yet to begin! Hops make a lovely garden plant (my dog, unfortunately, agreed, and ate them right out of the ground).
As others mentioned, Enterolab testing might help you determine where to begin with reinventing your diet. I found it useful even though I had already gone on the "when in doubt, leave it out" theory.
I recommend going for the gold, and eliminating everything at once - but that truly does *not* work for everyone's personal style, cooking habits, and social life. I couldn't bring myself to feel "somewhat" better and still wonder what was going wrong in my diet, so I chucked all grains, all legumes, and dairy at once (and I'm glad, believe it or not). It seems I may be able to add some of those things back in, but for me, recovering my energy and strength was of paramount importance. Of course that's important to everyone, but each of us has to make our own best guess about how to get there. Many people on this list have taken it one food at a time and figured out a path, and others have done something in between.
Hope you're already feeling better, and please keep us posted,
Sara
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Mitch your unfortunately right... No beer!! As a good Irish & German boy I do miss my beer... Oh well a very small price to pay for my health.
I was surprise like you at how many things have glten in them. Look at the section called Dee's kitchen for lots of great GF SF recipes. Overall Mitch the "good stuff" with gluten just is not worth feeling awful over. It's hard at first but once you get used to it its no big deal.
Best wishes Mitch
Joe
I was surprise like you at how many things have glten in them. Look at the section called Dee's kitchen for lots of great GF SF recipes. Overall Mitch the "good stuff" with gluten just is not worth feeling awful over. It's hard at first but once you get used to it its no big deal.
Best wishes Mitch
Joe
Joe
I sure did. My bad.Sara wrote:Tex neglected to mention that there are gluten-free beers
As Joe mentioned, the safest route is abstinence. There are some fairly decent so-called GF beers available, - Anheuser-Busch even makes one, (called Redbridge), but as far as I am aware, they are all actually low-gluten brews, and not truly gluten-free. Small amounts might not cause any symptoms, (for most people - not everyone), but if you drink enough of them, they will probably cause symptoms. We all have different threshold levels at which reactions are triggered, so there is no rule that is safe for everyone to follow.
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.
I didn't know that! - I didn't even think to wonder what they made GF beer from. I have a recipe for persimmon beer in some offbeat book or other... I wonder what's in that? (Mitch, as you can tell, my impulse is to reinvent the wheel... believe me, it's not required to live a happy healthy life with MC to brew your own, bake your own, etc.!)
Best of health,
Sara
Best of health,
Sara
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
FWIW, my GF daughters and non-GF husband have homemade pizza fairly regularly. The crust tastes the same as wheat pizza crust. I don't have it any more because I can't do the tomatoes.
And there are a number of restaurants that offer a GF pizza.
If I could eat pizza and liked beer, a GF pizza and a GF beer would just about make my Friday night, KWIM?
And there are a number of restaurants that offer a GF pizza.
If I could eat pizza and liked beer, a GF pizza and a GF beer would just about make my Friday night, KWIM?
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011