Hi everyone,
Firstly, thank you Gabes for the lovely msg! Much appreciated.
Has anyone out there with CC experienced painful sores in their throat?? Also known as Apthous ulcers or canker sores. I have suffered with these since I was a little girl. Now I am in the middle of my second flare of CC, and I have had these sores in my throat for weeks now. They seem to wax and wane. I also have been suffering with a low-grade fever (99.8-100.3) for a while now. Anyone else experience this? My G/I Doc who is pretty knowledgeable has been on vacation so I have not been able to ask him. I am trying to taper off my Entocort, but symptoms return after a few hours off the medication. (I take it first thing in the morning) So I am back on 2 capsules a day and feel much better again. Hope I won't have to take this medicine for the rest of my life!:(
Thank GOD for this board and all the wonderful people who are so kind to share their experiences.
~Trish...semi newbie!
Painful sores in thorat during a flare up of CC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Trish,
I'm sorry that you're still having symptoms. Your inability to taper the Entocort dosage without symptom relapse means that either not enough time to allow for healing has passed, or (most likely) you are reacting to 1 or more foods that remain in your diet.
Many of us suffer from canker sores when we are reacting (including myself). I haven't had any since I've been in remission (9 years now), but I never had any of them in my throat. Those sores are a result of inappropriate mast cell reactions, a condition known as mast cell activation disorder (MCAD) or mast cell activation syndrome (MCAS). It suggests that you might possibly have mastocytic enterocolitis (ME). Were your biopsies specially stained with a tryptase-based stain and examined for an increased mast cell presence as part of your pathology procedure when your CC was diagnosed? Even when the mast cell count is normal, though, it's possible to have MACD, simply because under certain inflammatory conditions, mast cells degranulate (releasing histamine and other inflammatory agents) when they shouldn't.
Certain foods are high in histamines and certain other foods promote mast cell degranulation. By avoiding those foods, many of us have been able to minimize mast cell problems. The webpage at the link below provides "starter" lists of such foods, but there are much better (more extensive) lists available.
FOODS THAT CONTAIN HISTAMINE OR CAUSE THE BODY TO
RELEASE HISTAMINE, INCLUDING FERMENTED FOODS
MACD can cause D, so these mast cell issues may or may not be the reason why you are unable to successfully reduce your dosage of budesonide. One way to find out is to try taking an antihistamine each day. It may be necessary to take up to 3 or 4 times the labeled dosage, in order to get relief, or it may be necessary to try a different type of antihistamine, or a combination of antihistamines. If you're wondering about the safety of exceeding the label allowances on antihistamines, allergists do this with patients who have chronic hives or rashes that are resistant to conventional treatment, so it is a generally safe practice, as long as one doesn't exceed a quadruple dosage level. However, as with all medications, never take more than is needed to reliably do the job.
Many of us here are taking an antihistamine every day, in order to achieve remission when Entocort plus diet changes is not sufficient, and some of us have found that the right antihistamine can replace budesonide (IOW, for some of us an antihistamine can be just as effective as budesonide). That gives you an idea of how powerful the effect from inappropriate mast cell degranulation can be.
The bottom line is that mast cells often play a critical role in all of the various forms of MC. For some of us, their effect is slight enough that we can ignore mast cell issues and do just fine. But for others, they are the dominate issue, meaning that they trump all the other aspects of the disease, and when that happens, we cannot afford to ignore them if we are to attain remission.
If you would like to learn more about mast cell issues, the thread at the link below contains links to information articles that will help with understanding and treating mast cell issues:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780
I almost forgot to mention — yes, I sometimes had fever when I was reacting.
Tex
I'm sorry that you're still having symptoms. Your inability to taper the Entocort dosage without symptom relapse means that either not enough time to allow for healing has passed, or (most likely) you are reacting to 1 or more foods that remain in your diet.
Many of us suffer from canker sores when we are reacting (including myself). I haven't had any since I've been in remission (9 years now), but I never had any of them in my throat. Those sores are a result of inappropriate mast cell reactions, a condition known as mast cell activation disorder (MCAD) or mast cell activation syndrome (MCAS). It suggests that you might possibly have mastocytic enterocolitis (ME). Were your biopsies specially stained with a tryptase-based stain and examined for an increased mast cell presence as part of your pathology procedure when your CC was diagnosed? Even when the mast cell count is normal, though, it's possible to have MACD, simply because under certain inflammatory conditions, mast cells degranulate (releasing histamine and other inflammatory agents) when they shouldn't.
Certain foods are high in histamines and certain other foods promote mast cell degranulation. By avoiding those foods, many of us have been able to minimize mast cell problems. The webpage at the link below provides "starter" lists of such foods, but there are much better (more extensive) lists available.
FOODS THAT CONTAIN HISTAMINE OR CAUSE THE BODY TO
RELEASE HISTAMINE, INCLUDING FERMENTED FOODS
MACD can cause D, so these mast cell issues may or may not be the reason why you are unable to successfully reduce your dosage of budesonide. One way to find out is to try taking an antihistamine each day. It may be necessary to take up to 3 or 4 times the labeled dosage, in order to get relief, or it may be necessary to try a different type of antihistamine, or a combination of antihistamines. If you're wondering about the safety of exceeding the label allowances on antihistamines, allergists do this with patients who have chronic hives or rashes that are resistant to conventional treatment, so it is a generally safe practice, as long as one doesn't exceed a quadruple dosage level. However, as with all medications, never take more than is needed to reliably do the job.
Many of us here are taking an antihistamine every day, in order to achieve remission when Entocort plus diet changes is not sufficient, and some of us have found that the right antihistamine can replace budesonide (IOW, for some of us an antihistamine can be just as effective as budesonide). That gives you an idea of how powerful the effect from inappropriate mast cell degranulation can be.
The bottom line is that mast cells often play a critical role in all of the various forms of MC. For some of us, their effect is slight enough that we can ignore mast cell issues and do just fine. But for others, they are the dominate issue, meaning that they trump all the other aspects of the disease, and when that happens, we cannot afford to ignore them if we are to attain remission.
If you would like to learn more about mast cell issues, the thread at the link below contains links to information articles that will help with understanding and treating mast cell issues:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=17780
I almost forgot to mention — yes, I sometimes had fever when I was reacting.
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 Tex,
Thank you so much for all the valuable information! You are a wealth of knowledge! I must admit
I really have not done much to modify my diet. I did remove gluten for 1 month, however I did not notice any difference in my health. I will read the attachments you sent with great attention! (BTW, I purchased your book on Amazon this past Sat)
Thank you for your kindness in answering my question so quickly!
~Trish
Thank you so much for all the valuable information! You are a wealth of knowledge! I must admit
I really have not done much to modify my diet. I did remove gluten for 1 month, however I did not notice any difference in my health. I will read the attachments you sent with great attention! (BTW, I purchased your book on Amazon this past Sat)
Thank you for your kindness in answering my question so quickly!
~Trish
Trish,
Thank you for the kind words. I hope you find the book to be very helpful.
There are so many aspects of this disease that are downright complex, and often diversified in unexpected directions, that it's no wonder that the disease is so poorly understood and so difficult to treat.
You're very welcome,
Tex
Thank you for the kind words. I hope you find the book to be very helpful.
There are so many aspects of this disease that are downright complex, and often diversified in unexpected directions, that it's no wonder that the disease is so poorly understood and so difficult to treat.
You're very welcome,
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.