How insightful, and validating, Tex! Actually, after I ate those cheetos when on the trip with my adult children a week ago should've been the telling force. eeeee gads! I believe that could've been a huge trigger, as it seemed to be 2 days before I'd completely gotten over having eaten that foolish snack! Of course, around 4 days later was when this latest episode occurred.
Good to know there's a helpful lab. I spent $900 trying to get this thing figured out dietary-wize through blood testing, and the only thing they could definitively come up with was an allergy to rasberries. I never eat them anyway!
Hugs,
Judy
Attn newbies or anyone struggling....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
SENT MESSAGE FROM JANET (MARIE)
SORRY REGARDING THIS, BUT I JUST RESTARTED MY POSTS AND DIDNT ENTER A SUBJECT, SHALL I DO IT AGAIN OR IS IT SOMEWHERE I CANT FIND?
REGARDS MARIE
REGARDS MARIE
jmg
Marie,
You don't have to enter a subject when you are responding to someone else's post. But your post does have a subject listed, right above your message.
Tex
You don't have to enter a subject when you are responding to someone else's post. But your post does have a subject listed, right above your message.
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,
I'm new to this site and have never posted on a forum before but here goes. I joined a few months after finding out I have CC. My GI gave me a handout which was pretty general and had very little about diet. Then I found this site. It is so helpfull! So many kind and thoughfull people! I have been on a GF and dairy free diet for about a month now prompted by reading the posts on this site. I get the results of a MRT in a week, which I hope will expose some food in-tolerances.
I started on Budesonide a month ago.
I have had Ankylosing Spondylitis for the last 40 years or so. It's a mild to moderate case with long periods of remission with a NSAID, 500mg per day. I realize, (now), that the NSAIDs probably brought on the CC.
So I need some advice/encouragement. I'm trying to get off the NSAIDs by substituting Tumeric and Ginger. After reading a few posts, I guess I'm really concerned that getting my gut to heal, remission, won't happen unless I completely eliminate NSAIDS.
Any suggestions would be great. Meanwhile I'll keep reading posts. I think I'll get the book too.
I'm so fortunate to have found this site!
Thanks,
Scott
I'm new to this site and have never posted on a forum before but here goes. I joined a few months after finding out I have CC. My GI gave me a handout which was pretty general and had very little about diet. Then I found this site. It is so helpfull! So many kind and thoughfull people! I have been on a GF and dairy free diet for about a month now prompted by reading the posts on this site. I get the results of a MRT in a week, which I hope will expose some food in-tolerances.
I started on Budesonide a month ago.
I have had Ankylosing Spondylitis for the last 40 years or so. It's a mild to moderate case with long periods of remission with a NSAID, 500mg per day. I realize, (now), that the NSAIDs probably brought on the CC.
So I need some advice/encouragement. I'm trying to get off the NSAIDs by substituting Tumeric and Ginger. After reading a few posts, I guess I'm really concerned that getting my gut to heal, remission, won't happen unless I completely eliminate NSAIDS.
Any suggestions would be great. Meanwhile I'll keep reading posts. I think I'll get the book too.
I'm so fortunate to have found this site!
Thanks,
Scott
Hi Scott,
Welcome to our internet family. When you have existing autoimmune-type issues for which NSAIDs are typically used for treatment, weaning off them can be challenging. In the long run, most of us find that by eliminating gluten, dairy, and whatever other foods are causing inflammation in our intestines, the inflammation in other locations in the body will slowly fade away also. But it takes time for that to happen, and of course while future damage can be prevented, any existing damage to bones and joints is not reversible.
About 10 to 12 years ago I had severe arthritis problems, and I still have the crooked, twisted fingers to prove it. But after I changed my diet, the inflammation in those joints faded away, I no longer have any problems with arthritis.
Yes, unfortunately any medications that promote inflammation must also be discontinued in order to reach remission from MC. It seems strange to think of an anti-inflammatory medication as actually causing inflammation, but in the case of NSAIDs, they promote the production of pro-inflammatory leukotrienes for many people who have an IBD. That phenomenon apparently is associated with any derivative of salicylic acid, and the reaction mechanism is discussed in the reference at the link below.
Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis
Hopefully, your diet changes will halt the progress of your AS, also. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. When you have existing autoimmune-type issues for which NSAIDs are typically used for treatment, weaning off them can be challenging. In the long run, most of us find that by eliminating gluten, dairy, and whatever other foods are causing inflammation in our intestines, the inflammation in other locations in the body will slowly fade away also. But it takes time for that to happen, and of course while future damage can be prevented, any existing damage to bones and joints is not reversible.
About 10 to 12 years ago I had severe arthritis problems, and I still have the crooked, twisted fingers to prove it. But after I changed my diet, the inflammation in those joints faded away, I no longer have any problems with arthritis.
Yes, unfortunately any medications that promote inflammation must also be discontinued in order to reach remission from MC. It seems strange to think of an anti-inflammatory medication as actually causing inflammation, but in the case of NSAIDs, they promote the production of pro-inflammatory leukotrienes for many people who have an IBD. That phenomenon apparently is associated with any derivative of salicylic acid, and the reaction mechanism is discussed in the reference at the link below.
Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis
Hopefully, your diet changes will halt the progress of your AS, also. Again, welcome aboard, 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.
New member and just diagnosed a few days ago with MC. On a couple of meds (one expensive enough to make me want to heal) that have helped me a ton. Not producing all my digestive enzymes, so had endoscopy on Tuesday to check my pancreas, liver, etc.. The procedure only lasted 10 minutes and my GI said it all looked beautiful! That was a little frustrating, although wonderful news, as he doesn't know why I'm not producing all my enzymes.
I have a background of sorts with this sort of thing as our family is full of folks with the gene for Celiac. Husband, both kids and two grandkids all have the gene. We all went through the EnteroLab testing about 3 years ago. I was not reacting to either gluten nor casein, which were the only two they tested for at the time. I have never been able to tell that any food triggered a problem. When the MC got really bad, I eliminated first dairy, then coffee, to see if I would improve. Nada.
Went gluten free 2 years ago, because I cook for so many with Celiac problems and didn't want to contaminate them. I do not know exactly when my MC started. Looking back, I've slowly added more and more symptoms over the past 3 years or so.
So, I really don't know where to begin on finding any triggers. Should I just stay on these meds that have made such a difference, or seek further help? There's a doctor in Austin, TX that has a successful practice treating these type of issues. Thinking of making an appointment with her, but undecided.
Reading some of the member posts where they are asking for help on what may have caused their most recent flare up sounds like what goes on constantly in my family. So, I feel right at home here. Thank you all for creating and posting to this site.
Joyce
I have a background of sorts with this sort of thing as our family is full of folks with the gene for Celiac. Husband, both kids and two grandkids all have the gene. We all went through the EnteroLab testing about 3 years ago. I was not reacting to either gluten nor casein, which were the only two they tested for at the time. I have never been able to tell that any food triggered a problem. When the MC got really bad, I eliminated first dairy, then coffee, to see if I would improve. Nada.
Went gluten free 2 years ago, because I cook for so many with Celiac problems and didn't want to contaminate them. I do not know exactly when my MC started. Looking back, I've slowly added more and more symptoms over the past 3 years or so.
So, I really don't know where to begin on finding any triggers. Should I just stay on these meds that have made such a difference, or seek further help? There's a doctor in Austin, TX that has a successful practice treating these type of issues. Thinking of making an appointment with her, but undecided.
Reading some of the member posts where they are asking for help on what may have caused their most recent flare up sounds like what goes on constantly in my family. So, I feel right at home here. Thank you all for creating and posting to this site.
Joyce
Hi Joyce,
Welcome to our internet family. Have you tried avoiding soy and all legumes (while continuing to avoid dairy and gluten)? That's the third most likely food/ingredient that causes people who have MC to react. Eggs are the next most likely problem.
What are the medications that you are taking to treat your MC? Some can be taken long-term, and some cannot.
Many types of drugs taken for other reasons can trigger MC reactions. Are you by any chance using any NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, or beta blockers? It's also possible for HRT and oral contraceptives to cause MC for many women.
Again, welcome to the group, and please feel free to ask anything.
Tex
Welcome to our internet family. Have you tried avoiding soy and all legumes (while continuing to avoid dairy and gluten)? That's the third most likely food/ingredient that causes people who have MC to react. Eggs are the next most likely problem.
What are the medications that you are taking to treat your MC? Some can be taken long-term, and some cannot.
Many types of drugs taken for other reasons can trigger MC reactions. Are you by any chance using any NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, or beta blockers? It's also possible for HRT and oral contraceptives to cause MC for many women.
Again, welcome to the group, 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.
Tex,
Thank you for replying.
I do have CC, so I HAVE read that NSAID use can possibly be the cause. I researched it a few months ago, because of other symptoms I was having...tinnitus and sudden hypertension (where my BP has always been low). So, actually, I had stopped taking those (for the most part) before my D got so bad. I now have Tramadol, but do not know if it is safe or not.
I seldom eat eggs, so it would not be hard to eliminate those. Mostly, we avoid soy, due to all the Celiac folks we have reacting to that. Do you know if raw egg yolks are ok? The Celiac people can tolerate them raw, but not the cooked versions.
My GI put me on Welchol (which I have just read can lower absorption of water soluble vitamins), due to it's side effect of constipation. I may have to drop that one, since I am probably not getting enough Vitamin K or Vitamin D, already. The other is Creon ($$$) which replaces the enzymes I am not producing.
Presently, I am eating a lot of things I don't normally eat, due to the fact I have lost approximately 20% of my body weight during this recent illness. I spent one evening in the ER a couple of weeks ago getting rehydrated. I'm trying to gain back weight, so I am eating what sounds good and not what is good for me.
So, I'm sort of caught in between desperately trying to regain some weight and trying to figure out what I can do in present circumstances to heal my gut.
I have tried eating coconut oil and it did help me quite a bit. I think this doctor in Austin sells supplements, which might appeal to me more than just ingesting the oil.
Thank you so much for your suggestions. Do you think I need to be off my meds though before I would be able to tell if eliminating those things would help?
Joyce
Thank you for replying.
I do have CC, so I HAVE read that NSAID use can possibly be the cause. I researched it a few months ago, because of other symptoms I was having...tinnitus and sudden hypertension (where my BP has always been low). So, actually, I had stopped taking those (for the most part) before my D got so bad. I now have Tramadol, but do not know if it is safe or not.
I seldom eat eggs, so it would not be hard to eliminate those. Mostly, we avoid soy, due to all the Celiac folks we have reacting to that. Do you know if raw egg yolks are ok? The Celiac people can tolerate them raw, but not the cooked versions.
My GI put me on Welchol (which I have just read can lower absorption of water soluble vitamins), due to it's side effect of constipation. I may have to drop that one, since I am probably not getting enough Vitamin K or Vitamin D, already. The other is Creon ($$$) which replaces the enzymes I am not producing.
Presently, I am eating a lot of things I don't normally eat, due to the fact I have lost approximately 20% of my body weight during this recent illness. I spent one evening in the ER a couple of weeks ago getting rehydrated. I'm trying to gain back weight, so I am eating what sounds good and not what is good for me.
So, I'm sort of caught in between desperately trying to regain some weight and trying to figure out what I can do in present circumstances to heal my gut.
I have tried eating coconut oil and it did help me quite a bit. I think this doctor in Austin sells supplements, which might appeal to me more than just ingesting the oil.
Thank you so much for your suggestions. Do you think I need to be off my meds though before I would be able to tell if eliminating those things would help?
Joyce
Joyce,
Tramadol is generally safe for us.
The EnteroLab egg tests are designed to detect antibodies to the primary protein in albumen (egg white), which is the protein in eggs most likely to cause a reaction. It seems likely that most of us should be able to tolerate egg yolks, as long as we get good separation from the albumen.
MC commonly causes malabsorption problems, and IBDs generally deplete vitamin D, so most (virtually all) of us need to take supplemental vitamin D in order to get our immune system back into good working order.
As far as diet and nutrition are concerned, it's usually better (from a health and quality of life standpoint) to make whatever adjustments to the diet are necessary in order to achieve remission as quickly as possible, and worry about nutrition later (after remission has been reached). Most people who take all the supplements recommended by naturopathic doctors, for example, are unable to reach remission, because they react to some of the supplements, and when more than one or two of them are being taken, it's virtually impossible to figure out which ones might be preventing remission.
Some people find that L-glutamine helps to heal their gut. L-glutamine is used regularly by body builders because of it's ability to heal smooth muscle damage.
For some of us, some medications can effectively bring remission, despite the presence of inflammatory foods in the diet. For many others, diet changes (to eliminate the worst offenders) may be necessary before the meds can bring remission, but the meds will typically mask lower level food sensitivities. When the med dosages are reduced, then additional food sensitivities can often be detected.
Tex
Tramadol is generally safe for us.
The EnteroLab egg tests are designed to detect antibodies to the primary protein in albumen (egg white), which is the protein in eggs most likely to cause a reaction. It seems likely that most of us should be able to tolerate egg yolks, as long as we get good separation from the albumen.
MC commonly causes malabsorption problems, and IBDs generally deplete vitamin D, so most (virtually all) of us need to take supplemental vitamin D in order to get our immune system back into good working order.
As far as diet and nutrition are concerned, it's usually better (from a health and quality of life standpoint) to make whatever adjustments to the diet are necessary in order to achieve remission as quickly as possible, and worry about nutrition later (after remission has been reached). Most people who take all the supplements recommended by naturopathic doctors, for example, are unable to reach remission, because they react to some of the supplements, and when more than one or two of them are being taken, it's virtually impossible to figure out which ones might be preventing remission.
Some people find that L-glutamine helps to heal their gut. L-glutamine is used regularly by body builders because of it's ability to heal smooth muscle damage.
For some of us, some medications can effectively bring remission, despite the presence of inflammatory foods in the diet. For many others, diet changes (to eliminate the worst offenders) may be necessary before the meds can bring remission, but the meds will typically mask lower level food sensitivities. When the med dosages are reduced, then additional food sensitivities can often be detected.
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.
Thank you, Tex. That's great information for me. I am struggling this morning. Perhaps it was the 3 baby aspirin I took yesterday. I'll avoid that again, for sure.
We do make our own bone broth and it has proven to be a good healer. It does wonders for some of my skin issues.
I am happy with your guidance on the egg issues, also. I am drinking some protein shakes and I usually add egg yolk to those.
Doing research on the internet gets me exactly zero! One report says one thing, the next says another. NOT HELPFUL!
I'm sure I will have more questions as I struggle along with this diagnosis. I do take Vitamin D3 spray daily, which goes under the tongue. I am hopeful that since it goes directly into the bloodstream, I am getting some of that. It might be good to sign into the testing site that my daughter uses, to track my levels.
Thank you again,
Joyce
We do make our own bone broth and it has proven to be a good healer. It does wonders for some of my skin issues.
I am happy with your guidance on the egg issues, also. I am drinking some protein shakes and I usually add egg yolk to those.
Doing research on the internet gets me exactly zero! One report says one thing, the next says another. NOT HELPFUL!
I'm sure I will have more questions as I struggle along with this diagnosis. I do take Vitamin D3 spray daily, which goes under the tongue. I am hopeful that since it goes directly into the bloodstream, I am getting some of that. It might be good to sign into the testing site that my daughter uses, to track my levels.
Thank you again,
Joyce
-
michelleclem
- Posts: 7
- Joined: Sun Aug 25, 2013 10:21 am
- Location: Arkansas
Hi Michelle,
Welcome aboard. Your GI doc is wrong about diet not affecting MC. That's why the treatments that he or she prescribes don't work.
Most doctors are so confused about MC that they don't even realize that it's an autoimmune type disease. But yes, it is, and when the symptoms are not controlled, it increases the risk of developing additional autoimmune diseases.
Again, welcome to the board, and please feel free to ask anything.
Tex
Welcome aboard. Your GI doc is wrong about diet not affecting MC. That's why the treatments that he or she prescribes don't work.
Most doctors are so confused about MC that they don't even realize that it's an autoimmune type disease. But yes, it is, and when the symptoms are not controlled, it increases the risk of developing additional autoimmune diseases.
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 Michelle,
Yes, it's an autoimmune disease. A lot of sites I've seen on the internet say it is not because, they don't see inflammation in the gut. In fact, my gut was just gorgeous. No problems, we thought. Then, the biopsy report. Interestingly though, my GI doctor had done a blood test on me for inflammation and I had C reactive protein in my blood. It isn't normally found in the blood and tells my doctor that I have inflammation. I think he thought he might find cancer somewhere at the time. I go back to him on Oct. 14th. It will be interesting, or maybe not, what he says. I do not expect him to say I should get off of any inflammatory foods though.
It's not that these doctors are stupid, but they only know what they are taught in medical school and they don't usually think outside the box on things. Here they are dealing with all these digestive issues and they never seem to think that what goes into your mouth and comes out the other end has anything to do with your disease. If there's a drug out there that will maybe help you, that's what they put you on. I was offered a steroid, but I shy away from those drugs. Sometimes, they are needed, but in the long run they not good for you to take. So, here I sit, feeling a lot better with my drugs, but full well knowing, I will soon have to start down the road to find out what foods may be triggering my issues.
I think this support group will help us both. It's always great to have a place to go and ask questions from others who are dealing with the same problems.
Yes, it's an autoimmune disease. A lot of sites I've seen on the internet say it is not because, they don't see inflammation in the gut. In fact, my gut was just gorgeous. No problems, we thought. Then, the biopsy report. Interestingly though, my GI doctor had done a blood test on me for inflammation and I had C reactive protein in my blood. It isn't normally found in the blood and tells my doctor that I have inflammation. I think he thought he might find cancer somewhere at the time. I go back to him on Oct. 14th. It will be interesting, or maybe not, what he says. I do not expect him to say I should get off of any inflammatory foods though.
It's not that these doctors are stupid, but they only know what they are taught in medical school and they don't usually think outside the box on things. Here they are dealing with all these digestive issues and they never seem to think that what goes into your mouth and comes out the other end has anything to do with your disease. If there's a drug out there that will maybe help you, that's what they put you on. I was offered a steroid, but I shy away from those drugs. Sometimes, they are needed, but in the long run they not good for you to take. So, here I sit, feeling a lot better with my drugs, but full well knowing, I will soon have to start down the road to find out what foods may be triggering my issues.
I think this support group will help us both. It's always great to have a place to go and ask questions from others who are dealing with the same problems.
-
michelleclem
- Posts: 7
- Joined: Sun Aug 25, 2013 10:21 am
- Location: Arkansas
Well my GI took me off the antispasmodic because it gave me blurred vision. Now she wants me to stop taking it and call her in three weeks... What am I suppose to do in the meantime? My stomach hurts throughout the day and running to the bathroom all day and night again... I was just starting to get some relief. I have had the symtoms for several years. Im 39. What can I do to make life a little easier? GI actually told me they don't much about collangeous colitis... It's just trial and error.. I asked her if it was an auto immune. She said its not like most IBD so no its not... But I have read a lot online that differ. HELP!!! 
Newbie Michelle
-
michelleclem
- Posts: 7
- Joined: Sun Aug 25, 2013 10:21 am
- Location: Arkansas
Tex, thanks for your help. It is so great to have people to chat with about this. I have had symtoms for several years. Only just got diagnosed a few months ago. At the end of my 2 month Entocort. I had relief the first two weeks and then back to suffering. My GI says that cc is not well known but it isn't an auto immune. I was just diagnosed with hashimotos auto immune. GI thinks they aren't connected. My Endocrin Dr did blood work and say I have Vit D deficiency. He told me to take 5000 Units D, Selenium 100 and a B complex. My antibodies are off the charts high. Platletts super high too. What does all this mean? My Dr 's don't feel the need to explain much... I did lactose free. caffeine free. Low fat but still no change.. I haven't tried gluten free yet because GI tested for celiacs. It was negative..
Newbie Michelle