Hello everyone,
Just want to introduce myself AND thank all of you for the wonderful support and information you have been providing to
all who come here. This is the best thing that has happened to
me personally since my diagnosis.
A brief history-I was apparently allergic to milk as a baby so Mom says because she smelled like sour milk the first 2 years of my life. Sound familiar, hehe? Read that on someone elses post.
I was diagnosed with IBS as a young woman and it's reared it's ugly head off and on all my life and I've seen that quite a few of you have had that experience also.
I started feeling "off" about 2 years ago now with lack of appetite and indigestion and weight loss, then would be ok, then
D would show up and calm down and on it went getting worse and worse until just before Christmas last year when I went into a very dangerous downward spiral. Now mind you I was going
from Dr to Dr asking for help and getting tests done and the Dr that ordered the test would say everything is normal and you need to see another Dr. Sound familiar? Finally I called the Dr I was seeing at the time and the nurse said go to the emergency room which was a good thing. I was dehydrated, in
kidney failure, platelets were VERY low etc etc. Nurses are the best aren't they? After a 2 week stay all the Drs that saw me and the GI out of state could not agree on a diagnosis but they sent me home anyway. It's been an interesting journey but landing here and seeing that I am NOT peculiar (called that by several of the Dr that saw me) has been the best thing to happen to me in 2 years.
So that's my story and so like so many you have heard before.
After online research and this site I decided to get the gluten out
of my diet and within 24 hours all symptoms were gone for 19 days. Ahhhh...bliss. Then one of my current Dr decided to start reducing prednisone and of course you know the rest. D came back but not too bad but I am sticking with the GF diet plan.
just joining up
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
just joining up
Be kinder than necessary for everyone is fighting some kind of battle.
Welcome, Brownie.
You'll get lots of good information and encouragement here. I'm glad that going GF has already helped you. Dairy and soy are the next major suspects, and after that, we all have to fine-tune our own diets. The Enterolab tests are a good start at identifying the primary food intolerances.
Again, welcome to the group!
Love,
Martha
You'll get lots of good information and encouragement here. I'm glad that going GF has already helped you. Dairy and soy are the next major suspects, and after that, we all have to fine-tune our own diets. The Enterolab tests are a good start at identifying the primary food intolerances.
Again, welcome to the group!
Love,
Martha
Martha
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi, Brownie! 
Oh, yes, I was one of those "sour milk" babies! Small wonder that I'm now completely off dairy. And yes, according to a recent poll, about half of us were originally diagnosed with IBS. I believe this is because when you're young and have no other "red flags," doctors generally don't do a colonoscopy, which is the only way MC can be diagnosed. Even then, if not enough biopsy samples were taken (or were taken from the wrong areas), it might not show up. Seems like most people only get an MC diagnosis when they are really, really sick.
If you got some relief from a GF diet, you've already figured out the biggest piece of the MC puzzle. Most of us have other food sensitivities as well. Medications can also sometimes make the problem worse.
Welcome to our little family--this is the most supportive, knowledgeable group of people I've come across. Don't be afraid to ask questions, because I'm sure some of us have asked the same ones at some point! Best of luck on your journey to wellness!
Oh, yes, I was one of those "sour milk" babies! Small wonder that I'm now completely off dairy. And yes, according to a recent poll, about half of us were originally diagnosed with IBS. I believe this is because when you're young and have no other "red flags," doctors generally don't do a colonoscopy, which is the only way MC can be diagnosed. Even then, if not enough biopsy samples were taken (or were taken from the wrong areas), it might not show up. Seems like most people only get an MC diagnosis when they are really, really sick.
If you got some relief from a GF diet, you've already figured out the biggest piece of the MC puzzle. Most of us have other food sensitivities as well. Medications can also sometimes make the problem worse.
Welcome to our little family--this is the most supportive, knowledgeable group of people I've come across. Don't be afraid to ask questions, because I'm sure some of us have asked the same ones at some point! Best of luck on your journey to wellness!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Welcome, Brownie - and good for you, taking control of your health into your own hands. I know the prednisone weaning can be a delicate process, but you're clearly willing and able to do what it takes to regain your health and maintain steady progress.
Please keep us posted, and let us know how we can help you on the path,
Sara
Please keep us posted, and let us know how we can help you on the path,
Sara
Hi Brownie,
Welcome to our internet family. You seem to be on your way to recovery, and with one or two more diet adjustments, you probably will no longer need any prednisone.
I have two questions, though, that I couldn't find the answers to in your post:
1. Did you ever get a diagnosis other than IBS?
2. Are you still using dairy products?
Again, welcome aboard, and please feel free to ask anything,
Tex
Welcome to our internet family. You seem to be on your way to recovery, and with one or two more diet adjustments, you probably will no longer need any prednisone.
I have two questions, though, that I couldn't find the answers to in your post:
1. Did you ever get a diagnosis other than IBS?
2. Are you still using dairy products?
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.
Welcome Brownie!
I second Tex's questions. I'm also wondering if they tested you for celiac disease. Also, assuming you have MC, have your docs mentioned Entocort as an alternative to Prednisone? I wonder if anyone has weaned from one to the other? I hope your symptoms continue to resolve as you drop the prednisone. I too had dramatic results when cutting gluten, but then the dairy intolerance became much more apparent. Soy too. Enterolab.com testing confirmed it all for me.
Look forward to hearing about your progress!
I second Tex's questions. I'm also wondering if they tested you for celiac disease. Also, assuming you have MC, have your docs mentioned Entocort as an alternative to Prednisone? I wonder if anyone has weaned from one to the other? I hope your symptoms continue to resolve as you drop the prednisone. I too had dramatic results when cutting gluten, but then the dairy intolerance became much more apparent. Soy too. Enterolab.com testing confirmed it all for me.
Look forward to hearing about your progress!
just joining up
Hi Tex and Zizzle,
Yes I did get a diagnosis from my GI of MC all though I don't know which kind and she also ruled out celiac disease. The rheumatologist of course diagnosed auto immune disorder so when I get into a bind I don't always know who to call on at least until now.
I am starting to get the dairy out of my diet because I am suspecious that it is a problem. Like some of you that doesn't leave much left to "feast upon" since I'm on a bland diet too.
Scary-the GI said stop taking prednisone and start taking entocort. And she ment stop today and start new tomorrow. I was scared for sure.
The Enterolab sounds like the way to go if you want to know what's really going on within and I would love to know more about dosing with pepto bismal. That treatment was never offered throughout this ordeal and to think that it could be so effective would be a shame to not use it.
Thanks for the warm welcome. Feels like hope.
Brownie
Yes I did get a diagnosis from my GI of MC all though I don't know which kind and she also ruled out celiac disease. The rheumatologist of course diagnosed auto immune disorder so when I get into a bind I don't always know who to call on at least until now.
I am starting to get the dairy out of my diet because I am suspecious that it is a problem. Like some of you that doesn't leave much left to "feast upon" since I'm on a bland diet too.
Scary-the GI said stop taking prednisone and start taking entocort. And she ment stop today and start new tomorrow. I was scared for sure.
The Enterolab sounds like the way to go if you want to know what's really going on within and I would love to know more about dosing with pepto bismal. That treatment was never offered throughout this ordeal and to think that it could be so effective would be a shame to not use it.
Thanks for the warm welcome. Feels like hope.
Brownie
Be kinder than necessary for everyone is fighting some kind of battle.
Brownie,
I never used any meds but Pepto Bismol, and I never tried the full 8xday Pepto regimen. Taking 4-6 per day even day felt like too much (mostly bloating), but I'm very sensitive to most medications. It helped somewhat but didn't result in full remission, unfortunately. I take Pepto for flare-ups and it does help calm things down. It also reduces the odor of D and gas substantially. I only take the tablets, not the chewables.
I never used any meds but Pepto Bismol, and I never tried the full 8xday Pepto regimen. Taking 4-6 per day even day felt like too much (mostly bloating), but I'm very sensitive to most medications. It helped somewhat but didn't result in full remission, unfortunately. I take Pepto for flare-ups and it does help calm things down. It also reduces the odor of D and gas substantially. I only take the tablets, not the chewables.
-
draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Brownie,
Have you gotten a copy of your pathology report? That should tell you what type of MC you have, if you want to know (not that it makes a difference in how you treat it).
Other auto-immune disorders are fairly common for people with MC.
Enterolab could really help you narrow down what you're dealing with, if you aren't able to figure it out by elimination. I went ahead and ordered the tests because I had eliminated gluten and dairy and was still having some mild reactions that I couldn't nail down, plus the gene testing for my kids' sake. If I gave them nasty genes, I will take them off nasty gluten before they develop symptoms. (Still waiting for the results!)
Check out the recipe section--might give you some good ideas! There are still good things to eat, you just have to be a little more creative.
Have you gotten a copy of your pathology report? That should tell you what type of MC you have, if you want to know (not that it makes a difference in how you treat it).
Other auto-immune disorders are fairly common for people with MC.
Enterolab could really help you narrow down what you're dealing with, if you aren't able to figure it out by elimination. I went ahead and ordered the tests because I had eliminated gluten and dairy and was still having some mild reactions that I couldn't nail down, plus the gene testing for my kids' sake. If I gave them nasty genes, I will take them off nasty gluten before they develop symptoms. (Still waiting for the results!)
Check out the recipe section--might give you some good ideas! There are still good things to eat, you just have to be a little more creative.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Brownie,
Gluten-sensitivity, (with or without celiac disease, or a celiac gene), predisposes us to additional autoimmune diseases, but we can usually prevent the development of future autoimmune issues, by modifying our diet to cut out the foods to which we are sensitive.
The Pepto-Bismol treatment involves taking 8 or 9 tablets per day, (or the equivalent dosage, in some other form), for 8 weeks. Some people cannot tolerate that much Pepto, but for those who can tolerate it, it has been shown in trials to have at least an 85% success rate for bringing remission. However, unless the GF diet is also adopted at the start of the treatment, most patients will relapse, after the treatment is ended. Dr. Fine, (the founder of Enterolab), developed the treatment over 10 years ago, but these days he recommends the diet alone, (without the Pepto), because a fair number of people react to the Pepto, and the diet will bring remission without it, (however, the combination will almost always bring remission faster than the diet alone).
Tex
Gluten-sensitivity, (with or without celiac disease, or a celiac gene), predisposes us to additional autoimmune diseases, but we can usually prevent the development of future autoimmune issues, by modifying our diet to cut out the foods to which we are sensitive.
The Pepto-Bismol treatment involves taking 8 or 9 tablets per day, (or the equivalent dosage, in some other form), for 8 weeks. Some people cannot tolerate that much Pepto, but for those who can tolerate it, it has been shown in trials to have at least an 85% success rate for bringing remission. However, unless the GF diet is also adopted at the start of the treatment, most patients will relapse, after the treatment is ended. Dr. Fine, (the founder of Enterolab), developed the treatment over 10 years ago, but these days he recommends the diet alone, (without the Pepto), because a fair number of people react to the Pepto, and the diet will bring remission without it, (however, the combination will almost always bring remission faster than the diet alone).
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.
Welcome!
I am also one of the "newer" posters on this site, and one who offers up thanks daily for this forum, it's members, and for Tex, who is a miraculous fount of knowledge!
I am veyr glad you appear to respond so well to going GF.
If I may ask, how much prednisone are you taking? DO NOT go off it cold turkey! It's difficult to kick. It has to be done slowly and carefully. I have done it 2x, and had a hard time both times.
While you are getting off prednisone, and are truly gluten free (means "going on a rampage" in your kitchen, to quote Sara, to get rid of ALL gluten, or gluten infected foods and utensils), try going off soy and dairy too. If you can eat rice, corn and eggs you have plenty to choose from.
Here's hoping you get better very soon.
I am also one of the "newer" posters on this site, and one who offers up thanks daily for this forum, it's members, and for Tex, who is a miraculous fount of knowledge!
I am veyr glad you appear to respond so well to going GF.
If I may ask, how much prednisone are you taking? DO NOT go off it cold turkey! It's difficult to kick. It has to be done slowly and carefully. I have done it 2x, and had a hard time both times.
While you are getting off prednisone, and are truly gluten free (means "going on a rampage" in your kitchen, to quote Sara, to get rid of ALL gluten, or gluten infected foods and utensils), try going off soy and dairy too. If you can eat rice, corn and eggs you have plenty to choose from.
Here's hoping you get better very soon.