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new to the board
I have been reading this board a long time and just now signed up......here's my story, so much like everyone else......for the past 3 yrs. I have lost 30 lbs. and D. Finally found a doctor who dx me.......on a liquid steroid which helps a little but I am still afraid to make too many plans in the future due to being afraid of accidents........last yr. went to Bahamas and while walking through the casino, I exploded with no warning.....very embarrassing as I couldn't stop the D from coming....ran through the casino dripping (with everyone looking at me) my husband had to go to our room and bring new clothes to me in the ladies room............have been tested for gluten intolerance, and every other test you can imagine . Does this ever get any better?
Welcome Randell,
I am sorry you are feeling so bad, for so long. The traditional tests given by our doctors typically do not actually pick up our food intolerances. Most of us react to gluten and dairy, and many also react to soy and eggs. If you want to be certain you can contact Enterolabs for testing that is more sensitive to our intolerances. Another way to find out is to do an elimination diet.
The steroid you are taking will help with the symptoms, but the diet will eventually heal your gut, and you can get your life back. Start with simple foods that are GF DF SF and EF. I started with chicken, rice and stringbeans. I now have added beef, more veggies (well cooked) and a bit of fruit. It gets better!!
You have come to the right place. There are people here that have been through it all, and can offer answers to all your questions.
Lori
I am sorry you are feeling so bad, for so long. The traditional tests given by our doctors typically do not actually pick up our food intolerances. Most of us react to gluten and dairy, and many also react to soy and eggs. If you want to be certain you can contact Enterolabs for testing that is more sensitive to our intolerances. Another way to find out is to do an elimination diet.
The steroid you are taking will help with the symptoms, but the diet will eventually heal your gut, and you can get your life back. Start with simple foods that are GF DF SF and EF. I started with chicken, rice and stringbeans. I now have added beef, more veggies (well cooked) and a bit of fruit. It gets better!!
You have come to the right place. There are people here that have been through it all, and can offer answers to all your questions.
Lori
Hi Randell,
Welcome to our internet family. Lori is right on target with her insight and her suggestions. The mainstream medical profession has no officially approved way to detect gluten sensitivity (because they do not recognize the EnteroLab tests), so they give celiac screening tests and pretend that those tests are capable of ruling out gluten sensitivity. They are not. The tests are so insensitive that the average time from onset of symptoms to an official diagnosis of celiac disease is 9.7 years in this country. That's absolutely ridiculous. Before those blood tests will yield a positive result, the intestines have to accumulate years of extensive damage. That's unacceptable. To make matters worse, the type of gluten sensitivity that we have with MC will never trigger a positive result on those tests, and yet we are just as sensitive to gluten as the average celiac. Plus, as Lori pointed out, we have other food sensitivities, as well.
You're probably wondering how you could suddenly become sensitive to these foods, when you've been eating them all your life, with no problems. The reason can be found in research that shows that when the genes that predispose to microscopic colitis are triggered, the genes that predispose to gluten sensitivity (and often additional foods as well) are also triggered in many of us.
This is the primary reason why most GI specialists are unable to successfully treat this disease — because they don't recognize that the key to the cause of the inflammation lies in the diet. Instead, they mistakenly insist that diet has nothing to do with it. That's like insisting that breathing polluted air has nothing to do with asthma, lung cancer, COPD, or any other respiratory diseases. It's absurd.
As Lori mentioned, steroids can help to mask the symptoms, but they cannot prevent the inflammation that causes this disease from being regenerated. The only way to stop the inflammation is to stop eating the foods that cause it. You can get your life back, but it takes dedication and hard work, to totally avoid the foods that are causing you to react, so that your gut can begin to heal.
Again welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Lori is right on target with her insight and her suggestions. The mainstream medical profession has no officially approved way to detect gluten sensitivity (because they do not recognize the EnteroLab tests), so they give celiac screening tests and pretend that those tests are capable of ruling out gluten sensitivity. They are not. The tests are so insensitive that the average time from onset of symptoms to an official diagnosis of celiac disease is 9.7 years in this country. That's absolutely ridiculous. Before those blood tests will yield a positive result, the intestines have to accumulate years of extensive damage. That's unacceptable. To make matters worse, the type of gluten sensitivity that we have with MC will never trigger a positive result on those tests, and yet we are just as sensitive to gluten as the average celiac. Plus, as Lori pointed out, we have other food sensitivities, as well.
You're probably wondering how you could suddenly become sensitive to these foods, when you've been eating them all your life, with no problems. The reason can be found in research that shows that when the genes that predispose to microscopic colitis are triggered, the genes that predispose to gluten sensitivity (and often additional foods as well) are also triggered in many of us.
This is the primary reason why most GI specialists are unable to successfully treat this disease — because they don't recognize that the key to the cause of the inflammation lies in the diet. Instead, they mistakenly insist that diet has nothing to do with it. That's like insisting that breathing polluted air has nothing to do with asthma, lung cancer, COPD, or any other respiratory diseases. It's absurd.
As Lori mentioned, steroids can help to mask the symptoms, but they cannot prevent the inflammation that causes this disease from being regenerated. The only way to stop the inflammation is to stop eating the foods that cause it. You can get your life back, but it takes dedication and hard work, to totally avoid the foods that are causing you to react, so that your gut can begin to heal.
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.
Hi Randell,
My two most recent explosive episodes (THE ONES THAT OUT IN PUBLIC) were what threw me into an internet search for help. People kept telling me not to believe the internet, but I came upon this support group and I finally found people that understand and some possible answers. After having 3 flareups in one year I am beginning to think the doctors must be missing something.....
I just found that I had an IGA test in March and I was within normal limits so hopefully the Endocort that I have taken since then won't interfere with the Enterolab results. I am getting rid of all gluten anyway...because I believe these people with experience. I will see what the results are for soy, dairy and eggs....I am really hopeful that I can have a little cheese, but I would rather not have cheese than get sick so it is a no brainer what I will do with the results.
I really like the attitudes I am seeing from the people on this site. One suggested I think about the fact that my new diet is a gift to myself. That makes sense to me and sure beats whining....
Welcome to the group. I am a newbie too.
Jean
My two most recent explosive episodes (THE ONES THAT OUT IN PUBLIC) were what threw me into an internet search for help. People kept telling me not to believe the internet, but I came upon this support group and I finally found people that understand and some possible answers. After having 3 flareups in one year I am beginning to think the doctors must be missing something.....
I just found that I had an IGA test in March and I was within normal limits so hopefully the Endocort that I have taken since then won't interfere with the Enterolab results. I am getting rid of all gluten anyway...because I believe these people with experience. I will see what the results are for soy, dairy and eggs....I am really hopeful that I can have a little cheese, but I would rather not have cheese than get sick so it is a no brainer what I will do with the results.
I really like the attitudes I am seeing from the people on this site. One suggested I think about the fact that my new diet is a gift to myself. That makes sense to me and sure beats whining....
Welcome to the group. I am a newbie too.
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
Welcome Randell. Yes, things can get better, but you have to commit to a strict diet... at least until you feel better. if you have been reading posts on here, you must know that the diet is what helps you get your life back.
The first step is to go gluten and dairy free. I also suggest that you take most of the fiber out of your diet ( like RAW fruits and veggies, beans, legumes...etc) because our inflamed guts just can't handle these foods right now. Those few steps should calm things down considerably. Healing takes time ( months to years) and all of us are different with our intolerances. Down the road you may find that you have to omit a few more foods to reach remission. Is this a hard process? yes, but if you really want to get your life back, this is the path.
To really understand this disease, you may want to order Tex's book. Just click on the picture of it on this page and it will take you to Amazon.
Again welcome and ask any question you may have. We are all here to help each other
Leah
The first step is to go gluten and dairy free. I also suggest that you take most of the fiber out of your diet ( like RAW fruits and veggies, beans, legumes...etc) because our inflamed guts just can't handle these foods right now. Those few steps should calm things down considerably. Healing takes time ( months to years) and all of us are different with our intolerances. Down the road you may find that you have to omit a few more foods to reach remission. Is this a hard process? yes, but if you really want to get your life back, this is the path.
To really understand this disease, you may want to order Tex's book. Just click on the picture of it on this page and it will take you to Amazon.
Again welcome and ask any question you may have. We are all here to help each other
Leah
Jean, I feel the same way.....the attitudes here are pure support and concern from like people. I am very cautious of taking just anyone's opinion off the Internet. Some groups seem to be for venting but in a negative way. Here we can vent our most negative feeling but it's always received in a positive supportive way. I've seen some really nasty people on other sites - that's why this is a good place to call home AND the information is reliable and works! Welcome home!
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease