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I'm new to this board and I wanted to say hello after lurking some because I wanted to thank you all for sharing your experiences.
After reading things that people have written I feel sort of like the odd man out. I took Entocort for two months after diagnosis (I've had this for like 20 years off and on and didn't know what it was) and it was very helpful in getting things under control. I had no side effects from taking this. I also began talking Sulfasalazine as the Entocort was winding down and had no side effects accept discolored urine which went away after a point. It's been very helpful so far.
I also have had no issues with food. I was tested for the Celiac issue and was negative. A reduction in gluten made no difference for me and neither did the removal of nightshade which I tried extensively for my Rheumatoid Arthritis (it didn't change that either). Cutting back on Raw foods didn't help either.
It was determined after a point that my issue was totally related to being an autoimmune disorder and that I would stay on the Sulfasalazine as long as I could tolerate it.
I guess I am here mostly because I know that my situation in not cured, just under control and I'm wondering how people live with this disorder. It sounds like you all live very well.
-U HAVE FOUND THE PERFECT PLACE FOR STARTING TO FEEL YA OATS AGAIN--
IT TAKES TRIAL AND ERROR BUT BEFORE u KNOW IT THAT WELLNESS ROAD WILL BE UNFOLING FOR u--
THINGS DO GET BETTER~~~~ AND IF u FEEL DOWN WE CAN PICK u UP~~~
oTHERS WILL SOON BE HERE TO FILL U IN --
BARBARA
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
to answer your question - accepting MC into your life is hard work,
i frequently refer to events/situations as 'pre MC' and 'post MC'
like any drastic change or loss in your life, one thing i did was grieve (wallow, anger, why? acceptance type process) pre MC foods, activities.
I have made adjustments to my life to accommodate the differences and embraced these with positive enthusiasm not regret
i am lucky as i am a fairly organised planning type person, which helps alot with food and planning out my work days.
the thing that helped most of all - the wonderful caring wise amazing people on this site, this is not an empty statement, it is with all my heart and soul that i am thankful for all the information and support to get control on the MC demon.
Good luck, be assured there is life with MC and post MC!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Sorry you have rheumatoid arthritis to deal with. Glad the MC isn't giving you problems right now. It comes and goes for some of us (most of us?) but we eventually figure out a strategy for living with it. The support of the people on the board is a big help as it isn't the sort of thing you can talk to everyone about!
I'm pretty impressed that you've struggled with MC for 20 years - a looong time - and a two-month course of Entocort and maintenance on Sulfasalazine have put you in remission.
That's encouraging news. Others may find that kind of treatment helpful also. It was nice of you to share your experience.
Gloria
You never know what you can do until you have to do it.
I notice you were tested for gluten and the results were negative. Unfortunately the blood test they use will only detect full blown celiac disease, and most of us here do not have that - but we are still sensitive to gluten. Even doing a scope to look for villi damage doesn't help, as we may not be far enough advanced for villi damage to show up. That is why so many of us have used Enterolab for stool testing. It is very very sensitive and will pick it up when other tests don't. Elimination diets are the other option.
I also note you say you 'reduced' gluten. Sadly, gluten is an all or nothing problem. Even a small amount will be enough to keep a gluten response happening. For example, if you spread butter on to normal bread and later use that same butter for a gluten free meal, the small amount of crumbs (not necessarily visible) that are in the butter will transfer and probably be enough to cause a reaction. It can also take quite some time for the change in diet to take effect - although it is really variable between different people.
That said, if what you are doing is working, then that is fantastic. The main objective is to stay healthy!
Hi CJD and welcome to the group. Certainly you have found some of the best and most knowledgeable people around.
It sounds like you have been dealing with this for a while and the comments are correct regarding the blood test for celiac. Most of us have a negative celiac blood test but do react to gluten products; along with gluten the other main foods of note are soy and dairy products.
Like you I have been on 9mg / day of Entocort and am now switching over to Imuran as I also have Crohns disease in an area that the Entocort does not readily treat.
It certainly is important to determine what you are reacting to, and there are 2 ways to accomplish this. The first method is to have samples sent to Enterolab for testing, which will result in a report that will help show you your genetic markers for certain intolerances and your reactions levels to various foods.
The other methods is to keep a food diary, and carefully eliminate foods systematically, and keep notes on any changes that you note. Even with the Enterolab testing, this is a valuable tool that is often used to help fine tune your diet.
Welcome to the board. To answer your question, similar to what you have done, we all have developed a personalized treatment program that fits our needs, and our lifestyle, and we continue to fine tune it, as needed. Some of us use medications, some use diet alone, and some use a combination.
As Lyn mentioned, though, if you're going to use diet to control your symptoms, with this disease, a reduction in gluten intake will make no noticeable difference in your symptoms. Even trace amounts will keep the reaction going, and it can take months on a strict GF diet, before improvement becomes apparent. Some of us are lucky enough to see improvement sooner, but some take longer. We are all different. Compliance has to be very strict - just as strict as the dietary requirements for celiacs, except that most of us are sensitive to other foods besides gluten, and those have to be avoided 100%, also.
However you choose to control your symptoms, we will support you in any way we can. 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.
I've had this issue for about 20 years but my symptoms have been all over the map so it was something that wasn't diagnosed. I had a colonoscopy about three years ago to look at for something that wasn't related to MC and so they didn't do the test for it. It wasn't until I had this watery stool for several months and the major increase in running to the bathroom (which I had for a while several years ago but went away after a couple of weeks-and the discontinuation of a medication) that they decided to test me for the bowel issues.
Thank you for all the information about the gluten issues. I will certainly bare those in mind as I continue to explore what's causing my individual problems. I do not want to be on medication forever.
Welcome CJD!
Just wondering if you've tried any alternative treatments for your RA, such as the Dr. Brown protocol of low-dose antibiotics. Many believe RA is caused by an infection with mycobacteria which cannot be detected through blood tests. MC may also have a similar infectious root cause. If you tried it, I wonder if it had any effect on your MC symptoms.
from Hong Kong and thank you for posting the story of your symptoms, meds and DXs.
The more I learn about MC the more complicated it all seems to get. However, whatever the root cause or causes, autoimmune reaction - not just in the gut - is for me a common theme.
All the best as we learn more and get better together, ant
Zizzle wrote:Welcome CJD!
Just wondering if you've tried any alternative treatments for your RA, such as the Dr. Brown protocol of low-dose antibiotics. Many believe RA is caused by an infection with mycobacteria which cannot be detected through blood tests. MC may also have a similar infectious root cause. If you tried it, I wonder if it had any effect on your MC symptoms.
Thank you! I do know that a lot of researchers believe that the cause is some sort of virus and that many people with RA have a strange flu story (I do to as it happens). I'll have to check it out.
Visit the Microscopic Colitis Foundation Website
