I have been reading many helpful posts and getting my foods in order.
I decided to compare a old pathology report I havent looked at in years and was shocked I did not know what it meant.
12/12/2005 Postop diagnosis Gastritis small hiatal hernia and nonspecific colitis
random biopsy of colen;Mild nonspecific chronic inflamation
Treatment was short term diet change
No wonder I was getting D off and on with the foods I ate
So in Sept.here it was WD every day 20 x everything I ate (deep fried foods and fatty meats)
Finally after 3 wks my Dr gave up and wanted to send me to the same general surgeon as before and I told him NO.I found a GI that would get me in(thanks to GI nurse that made things happen right now)
Colonospy 11/17/20014 PATHOLOGY REPORT- CC
Treatment-BUDESONIDE 9 MG low fiber low residue diet
I looked up CC and my world melted.A few days later I found HOPE ALL OF YOU STICKING TOGETHER THANKS
Have A question for anybody. when I eat something wrong I get flu like symptoms in my head but dont have to run to the throne it lasts all day does this happen to anyone else?
TERRY
IF I KNEW THEN WHAT I KNOW NOW
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Terry,
Yes, the indications of MC were there in your old pathology report, but apparently your doctor didn't understand what they meant (and neither did the pathologist, because she or he didn't clarify the findings).
Your flu-like symptoms (in the head) are common with gluten sensitivity. Gluten peptides can cross the blood/brain barrier to cause brain inflammation, and neurological symptoms. It's possible that other food sensitivity peptides can also cross the blood/brain barrier, but that normally doesn't happen unless the diet includes gluten.
Here is a link to a research article that describes how some people experience neurological symptoms from gluten before gastrointestinal symptoms develop, and in some cases, patients have neurological symptoms even though GI symptoms never develop.
http://jnnp.bmj.com/content/72/5/560.full
Tex
Yes, the indications of MC were there in your old pathology report, but apparently your doctor didn't understand what they meant (and neither did the pathologist, because she or he didn't clarify the findings).
Your flu-like symptoms (in the head) are common with gluten sensitivity. Gluten peptides can cross the blood/brain barrier to cause brain inflammation, and neurological symptoms. It's possible that other food sensitivity peptides can also cross the blood/brain barrier, but that normally doesn't happen unless the diet includes gluten.
Here is a link to a research article that describes how some people experience neurological symptoms from gluten before gastrointestinal symptoms develop, and in some cases, patients have neurological symptoms even though GI symptoms never develop.
http://jnnp.bmj.com/content/72/5/560.full
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.
It's not unusual to feel that we do not react to gluten, because the antibodies have such a long half-life that when most of us remove it from our diet, it doesn't seem to make any difference. We seem to react to anything and everything, and we don't notice any difference when we eat gluten. Those who respond quickly to a gluten-free diet are lucky, because they can easily tell the difference. For the rest of us it's much more difficult.
For most of us, we have to totally avoid gluten (even tiny trace amounts of it) for at least several weeks, and more typically, several months, before we can detect a difference in the way that we feel. For some of us it can take a year or more, before we see remission of our symptoms.
But if we will meticulously avoid gluten for 6 to 8 weeks, and then test it by eating it again, we will usually see the dramatic truth, as our body reacts to the re-exposure. The reason why this works to pinpoint a gluten (or any other food) sensitivity is because for many of us, if we have been producing antibodies long enough, we tend to build up a tolerance for gluten (or other foods). Our immune system is producing antibodies (because we are sensitive to gluten), but they are not promoting clinical symptoms, so we are unaware of the damage that is accruing to our intestines. By totally avoiding gluten for a long-enough period of time, we lose that tolerance, and the truth can then be seen.
Asymptomatic celiacs are actually rather common. The lining of their small intestine may look like a battleground, from all the damage, and their blood and their stool may be loaded with antibodies to gluten, but they show no GI symptoms — no diarrhea, no cramps, no pain, etc. Many of them show other symptoms, however, in the form of neurological issues, such as those described in the article.
Or, you can do what most of us do, and order a stool test at EnteroLab, to test for antibodies to gluten (and other foods) in a stool sample.
Tex
For most of us, we have to totally avoid gluten (even tiny trace amounts of it) for at least several weeks, and more typically, several months, before we can detect a difference in the way that we feel. For some of us it can take a year or more, before we see remission of our symptoms.
But if we will meticulously avoid gluten for 6 to 8 weeks, and then test it by eating it again, we will usually see the dramatic truth, as our body reacts to the re-exposure. The reason why this works to pinpoint a gluten (or any other food) sensitivity is because for many of us, if we have been producing antibodies long enough, we tend to build up a tolerance for gluten (or other foods). Our immune system is producing antibodies (because we are sensitive to gluten), but they are not promoting clinical symptoms, so we are unaware of the damage that is accruing to our intestines. By totally avoiding gluten for a long-enough period of time, we lose that tolerance, and the truth can then be seen.
Asymptomatic celiacs are actually rather common. The lining of their small intestine may look like a battleground, from all the damage, and their blood and their stool may be loaded with antibodies to gluten, but they show no GI symptoms — no diarrhea, no cramps, no pain, etc. Many of them show other symptoms, however, in the form of neurological issues, such as those described in the article.
Or, you can do what most of us do, and order a stool test at EnteroLab, to test for antibodies to gluten (and other foods) in a stool sample.
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
Thought you would like to know I have been GF for a couple of days and feel better already.
My DW has been trying to get my weight back on that I had lost a couple of months ago with all the D and now being DF GF is going to make
it harder I hopes she doesent get to discouraged she has been worried as H with me haveing CC
THANKS TERRY
Thought you would like to know I have been GF for a couple of days and feel better already.
My DW has been trying to get my weight back on that I had lost a couple of months ago with all the D and now being DF GF is going to make
it harder I hopes she doesent get to discouraged she has been worried as H with me haveing CC
THANKS TERRY
-
Gabes-Apg
- Emperor Penguin
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- Location: Hunter Valley NSW Australia
Terry
there are still good GF options that will allow weight gain.
the first important step is a digestion system that is operating better, ie no inflammation!
as the gut heals and the digestion system starts to absorb nutrients properly, wellness will return.
GF does not mean the absence of carbs... you could use GF flour to make muffins (sweat or savory), biscuits or cakes
have rice with meals
having good serves of well cooked high carb vegetables like potato, cauliflower etc
there are still good GF options that will allow weight gain.
the first important step is a digestion system that is operating better, ie no inflammation!
as the gut heals and the digestion system starts to absorb nutrients properly, wellness will return.
GF does not mean the absence of carbs... you could use GF flour to make muffins (sweat or savory), biscuits or cakes
have rice with meals
having good serves of well cooked high carb vegetables like potato, cauliflower etc
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Terry,
That's good news that you're feeling better so quickly. Seeing signs of improvement so soon (rather than later) definitely helps to make us much more motivated to stick with the diet. As Gabes mentioned, if you can eat alternative grains such as corn or rice, (and vegetables such as potatoes and sweet potatoes) you should be able to regain your weight reasonably soon. If you have a lot of intestinal damage, so that you have a malabsorption problem, then your gut may have to do some healing before you are able to gain weight easily, but as your healing progresses, the day will come when you will begin to be concerned about gaining too much weight.
Good luck with your recovery, and keep us updated now and then.
Tex
That's good news that you're feeling better so quickly. Seeing signs of improvement so soon (rather than later) definitely helps to make us much more motivated to stick with the diet. As Gabes mentioned, if you can eat alternative grains such as corn or rice, (and vegetables such as potatoes and sweet potatoes) you should be able to regain your weight reasonably soon. If you have a lot of intestinal damage, so that you have a malabsorption problem, then your gut may have to do some healing before you are able to gain weight easily, but as your healing progresses, the day will come when you will begin to be concerned about gaining too much weight.
Good luck with your recovery, and keep us updated now and then.
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
I called my DR office a week ago to get something for stress going on 3wks now he wanted to prescribe a SSRI I said no with that group of drugs I would have more chance of a flare up would rather try something in the SNRI group .He now wants to know where I am getting my info and I have to meet with him to discuss my treatment options (He is not happy with me) I have not been happy with his treatments on my meds for years so I am looking for A new DR today.
I called my DR office a week ago to get something for stress going on 3wks now he wanted to prescribe a SSRI I said no with that group of drugs I would have more chance of a flare up would rather try something in the SNRI group .He now wants to know where I am getting my info and I have to meet with him to discuss my treatment options (He is not happy with me) I have not been happy with his treatments on my meds for years so I am looking for A new DR today.
Terri,
It's a shame that he has that attitude. Some doctors feel threatened by online discussion groups, and they often hate anything to do with the Internet with a passion, because of their attitude. On the other hand, many of the more up-to-date, better-informed doctors embrace the Internet, and recommend joining online discussion groups.
Good luck with your search for a new doctor. Good doctors are out there (those who actually listen to their patients and are willing to work with them), but sometimes they are not easy to locate. And many specialists who have joined groups of other doctors in treatment centers, all seem to follow the same guidelines, so they all have a similar attitude, based on the rules dictated by the organization. That can make trying to find a more patient-friendly physician much more difficult in certain locations.
Tex
It's a shame that he has that attitude. Some doctors feel threatened by online discussion groups, and they often hate anything to do with the Internet with a passion, because of their attitude. On the other hand, many of the more up-to-date, better-informed doctors embrace the Internet, and recommend joining online discussion groups.
Good luck with your search for a new doctor. Good doctors are out there (those who actually listen to their patients and are willing to work with them), but sometimes they are not easy to locate. And many specialists who have joined groups of other doctors in treatment centers, all seem to follow the same guidelines, so they all have a similar attitude, based on the rules dictated by the organization. That can make trying to find a more patient-friendly physician much more difficult in certain locations.
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.
GREAT NEWS
I saw my GI today first time since my colonospy. My nurse was happy to see me gain 5 lbs since my first visit in early Nov and that I have researched MC and my food elimination I think she was impressed when I was told her I was using bone broth and coconut oil to help heal my gut.(I don't think this was something she didn't already know)
Now my GI comes in, brief questions and explains a change of treatment for me taper Budesonide to 6MG a day for 60 days then PEPTO 3 daily until I see him in 6months .
My GI was so happy with my improvement he rose from his chair and said HAPPY NEW YEAR he shook my hand and said for you my friend this is truly A HAPPY NEW YEAR .I had A tear come to my eye I so HAPPY.
I know now that I am truly on the path to remission
Thanks to everyone for all of the info and support I am improving
TERRY
I saw my GI today first time since my colonospy. My nurse was happy to see me gain 5 lbs since my first visit in early Nov and that I have researched MC and my food elimination I think she was impressed when I was told her I was using bone broth and coconut oil to help heal my gut.(I don't think this was something she didn't already know)
Now my GI comes in, brief questions and explains a change of treatment for me taper Budesonide to 6MG a day for 60 days then PEPTO 3 daily until I see him in 6months .
My GI was so happy with my improvement he rose from his chair and said HAPPY NEW YEAR he shook my hand and said for you my friend this is truly A HAPPY NEW YEAR .I had A tear come to my eye I so HAPPY.
I know now that I am truly on the path to remission
Thanks to everyone for all of the info and support I am improving
TERRY
Hi Terry,
Apparently your doc realizes how debilitating MC can be. Good for him. His enthusiastic reaction makes me wonder if you might be the first of his MC patients to show signs of improvement. Whatever the situation, that was very kind of him to empathize so strongly with you. I like his style.
Tex
Apparently your doc realizes how debilitating MC can be. Good for him. His enthusiastic reaction makes me wonder if you might be the first of his MC patients to show signs of improvement. Whatever the situation, that was very kind of him to empathize so strongly with you. I like his style.
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 all,
Maybe all of us should start at "silent" campaign by buying Tex' book and offer it to our doctors, as a gift?
I don't know the exact number of board members here, but I think spreading the vital information might give huge synergy effects, over time ...
A sort of a slow & silent enlightening process.
And if we ourselves wouldn't benefit from it today or tomorrow, maybe our children & grandchildren would.
Lilja
Maybe all of us should start at "silent" campaign by buying Tex' book and offer it to our doctors, as a gift?
I don't know the exact number of board members here, but I think spreading the vital information might give huge synergy effects, over time ...
A sort of a slow & silent enlightening process.
And if we ourselves wouldn't benefit from it today or tomorrow, maybe our children & grandchildren would.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
