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Anne wrote:And to be honest I was just in the right place at the right time!
That's exactly how all heroes and heroines are created.
Anne wrote:And from that I guess that also means my MC does not extend into my duodenum (and maybe the small intestine??) i.e. this is just a colonic issue.
Unless you've seen the pathology report, and it shows a Marsh 0 level, it's not safe to conclude that your small intestine is not affected. Many/most of us have a Marsh 1 level on small intestinal biopsy. A Marsh 1 level refers to lymphocytic infiltration at the tips of the villi, of at least 20 lymphocytes per 100 enterocytes (the same criteria used to diagnose MC from colonic biopsy samples). Coeliac disease requires a Marsh 3 level of damage for a positive result. Therefore, most GI specialists tend to refer to anything below a Marsh 3 level as "normal", since it is not considered to be diagnostic of coeliac disease.
Actually, research shows that most of us have lymphocytic infiltration in our ileum, at the very least, and for many of us, the inflammation extends on up the small intestine. Doctors rarely bother to consider it, though, because it's not a diagnostic requirement for MC — only the histology of the colon is considered to be relevant for an MC diagnosis, no matter how inflamed the small intestine might be.
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 don't know if that information correlates to having less food intolerances.... but I hope so . Since you have been on 9mg. of Entocort for so long, you probably won't be able to tell what intolerances you have until you are on a lower dose.
How cool to have taught Sting's daughter and the Middleton sisters!!!
FYI....my biopsy results showed Marsh Level 3A. (There's 3a, 3b, and 3c.) Wasn't happy but it could have been worse at a Marsh of 4 so feeling pretty lucky.
After dealing with many celiacs on other internet websites, it seems to me they can tolerate a lot more food than I can. Some seem to only go GF and they feel terrific. Tex's book states that MC can trigger the genes for other food sensitivities which is why I always thought that MCer's probably had more food intolerances than a Celiac. Then I read recently that 60% of Celiacs aren't getting much better and have found out that they in fact are sensitive to other foods and until they take those foods out, they won't get better. Then you hear Jennifer Espositos story in regards to her Celiac disease and now finding she has a lot of other food intolerances. So honestly, I think both diseases trigger other food intolerances, but it's very hard to say which one is prone to having more.
So far I've only had to give up Gluten and Dairy and I hope it stays that way! Best of luck to you once you start weaning off the Entocort. Like Leah said, you'll be able to tell what foods you are reacting to once you wean down. I weaned off Pepto and never had any reactions except to added sugar I had eaten over a 3-day period. Been off a week and a half and actually doing better than I was while on the Pepto. I had occasional bloating while on Pepto, now I have none. Weird.
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
I am so sorry to hear about Maurice. His family and friends are in my thoughts.
But still congrats on your tests! And what an amazing doctor you have! My doctor doesn't believe that dietary change can have a positive effect on the disease. I'm busy trying to convince him and I won't give up.
And what a coincidence, I am also a teacher. I teach French, but I don't have your expierence. I'm only 23 years old and fresh out of college...
Good luck.
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Anne wrote:And from that I guess that also means my MC does not extend into my duodenum (and maybe the small intestine??) i.e. this is just a colonic issue.
Unless you've seen the pathology report, and it shows a Marsh 0 level, it's not safe to conclude that your small intestine is not affected. Many/most of us have a Marsh 1 level on small intestinal biopsy. A Marsh 1 level refers to lymphocytic infiltration at the tips of the villi, of at least 20 lymphocytes per 100 enterocytes (the same criteria used to diagnose MC from colonic biopsy samples). Coeliac disease requires a Marsh 3 level of damage for a positive result. Therefore, most GI specialists tend to refer to anything below a Marsh 3 level as "normal", since it is not considered to be diagnostic of coeliac disease.
Actually, research shows that most of us have lymphocytic infiltration in our ileum, at the very least, and for many of us, the inflammation extends on up the small intestine. Doctors rarely bother to consider it, though, because it's not a diagnostic requirement for MC — only the histology of the colon is considered to be relevant for an MC diagnosis, no matter how inflamed the small intestine might be.
Tex
Hi Tex,
Do you know if the "Marsh Level's" are universal or American? I may need to explore this to formulate the question for my consultant!
Happy to report, that since coming off Asacol and going GF I have settled into a 2-3 Normans pattern (generally BSC Type 3) a day! I guess the frequency is down to about 500g of veg a day plus 300g fruit! I feel better than I have in a long time and, while I'm tired (I finish work tomorrow for 2 weeks!!) I am not fatigued - big difference!
Also, as far as funerals go, today's is up there amongst the best! (that's so Irish!!)! The Church was packed - standing room only - the music was fabulous (I sung my heart out for Maurice) and ironically as a team, I think we are now closer than ever having had to go through this! The one thing about Irish funerals is that they are [obviously] sad occasions but more often than not the funeral itself is a celebration! Maurice apparently described our department (Department of Environment) as the Department of Enjoyment!! At least his last job was his most enjoyable! And now hopefully he is at peace!
Thank you all for your support and prayers and please keep praying for the family!
Anne
Anne wrote:Do you know if the "Marsh Level's" are universal or American? I may need to explore this to formulate the question for my consultant!
As far as I'm aware, that's a universal diagnostic standard for coeliac disease. In fact, a British researcher (by the name of M. N. Marsh) originally developed the Marsh classification system to specify certain levels of small intestinal damage. Here's a link to an abstract of the article that he originally published about his system:
The Marsh system is briefly discussed on pages 10 and 11 in my book, if you want a quick and easy reference.
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 about your still doing well since coming off Asacol and going GF.
It sounds like your co-worker's funeral was very nice. It's always interesting to read about different cultures and and traditions.
Gloria
Thanks Gloria! Yes Irish Funerals are special and certainly help the grieving process.
On another note, after waking up yesterday morning at about 4am with indigestion and heartburn which did not respond to Gaviscon, followed by generalised stumoch ache all day, today there has been a bit of a set back - 7 BMs starting with type 4 and deteriorating to type 6! There is a bug doing the rounds and I think this is it!! They are certainly not my normal symptoms and while I feel OK, I just have that sense of something not quite right! Hopefully, I am over the worst as it seems to last no more than 48-72 hours!!! And some include vomiting - luckily not me!
It is still frustrating that every blip alarm bells ring! I think in this instance it is just a bug because I have been very strict with my GF diet.
I guess the frequency is down to about 500g of veg a day plus 300g fruit! I feel better than I have in a long time and, while I'm tired (I finish work tomorrow for 2 weeks!!) I am not fatigued - big difference! 
The Church was packed - standing room only - the music was fabulous (I sung my heart out for Maurice) and ironically as a team, I think we are now closer than ever having had to go through this! The one thing about Irish funerals is that they are [obviously] sad occasions but more often than not the funeral itself is a celebration! Maurice apparently described our department (Department of Environment) as the Department of Enjoyment!! At least his last job was his most enjoyable! And now hopefully he is at peace! 
