Hi everyone,
I wanted to introduce myself after being recently diagnosed with MC last month and luckily stumbled across this board in my quest for health and knowledge. Thanks to a whole group of bumbling idiots at my former Gastrointestinal group practice, I went misdiagnosed for over 7 years. Thankfully, I was referred by my primary to a new GI doc and she immediately scheduled a sigmoidoscopy.
Since the diagnosis (LC to be specific), I have been doing tons of homework here on this site in the last couple of weeks to familiarize and arm myself with as much information as I can process in order to start healing. Thanks so much to all of the hard work and dedication of the members here for sharing this plethora of information--truly, if it wasn't for this site I would be still be feeling alone, lost, and most likely still be shamelessly shoving cheese quesadillas down my gullet!
A little bit of medical background:
Dx w/ Type I diabetes age 10;
Dx w/ Iritis (another autoimmune disease) age 20;
Dx w/ LC August 2012 age 40ish
Northern European ancestry
I started GF/DF/SF/EF the first day I started reading this forum;
Started paleo-ish diet, kicked my Diet Coke habit cold-turkey(still have the shakes a bit);
Started taking L-Glutamine and VSL#3;
Current meds: 20 mg Pravastatin; 20 mg Lisinopril; Manage diabetes with insulin pump and CGM system; started Budesonide 3 days ago (9 mg) YAY!!!
Vitamins: D3, B Complex, fish oil, Vit. C;
Anyway, I am thrilled to be here after being so ill with no way to leave my home in 7 years really and hope others can learn from my trials as well. I had to cancel a special wedding trip a few days ago because of fear of MC problems mid-flight but now I feel like there is finally hope :)
Thanks to all,
Pam
[/u]
New Member with Type I Diabetes and Now MC...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Pam,
Welcome to our internet family. I'm sorry that it took so long before you finally received a diagnosis, but I'm glad to hear that you're finally on you way toward getting your life back. Both diabetes and iritis are connected with gluten sensitivity and LC (and other IBDs), but unfortunately, most GI specialists don't seem to be aware of that.
It might be a good idea to ask your primary doctor to screen you for celiac disease (it's a simple blood test) before your antibodies fade away on the GF diet, but the reality is that we have found that the treatment for MC will also control celiac disease, so a celiac diagnosis is sort of a moot point, unless you just want to touch all the bases. The main difference is that it's much easier to convince most doctors that you need to follow a strict diet to avoid all your food sensitivities if you have a celiac diagnosis. Otherwise most of them still insist that diet has nothing to do with LC.
You're definitely off to a great start toward healing your digestive system. You're a quick study — good for you.
After being symptomatic for so long, it will take a long time to heal, but you will eventually get there. I assume that your doctor advised you that the budesonide will increase your blood sugar, so you might have to adjust your insulin treatment while you are taking it, but that isn't necessarily chiseled in stone.
With this disease, denial just prolongs the misery, so taking charge of your health as you are doing will definitely get you to remission as quickly as possible. You are obviously motivated, and motivated people get results. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. I'm sorry that it took so long before you finally received a diagnosis, but I'm glad to hear that you're finally on you way toward getting your life back. Both diabetes and iritis are connected with gluten sensitivity and LC (and other IBDs), but unfortunately, most GI specialists don't seem to be aware of that.
It might be a good idea to ask your primary doctor to screen you for celiac disease (it's a simple blood test) before your antibodies fade away on the GF diet, but the reality is that we have found that the treatment for MC will also control celiac disease, so a celiac diagnosis is sort of a moot point, unless you just want to touch all the bases. The main difference is that it's much easier to convince most doctors that you need to follow a strict diet to avoid all your food sensitivities if you have a celiac diagnosis. Otherwise most of them still insist that diet has nothing to do with LC.
You're definitely off to a great start toward healing your digestive system. You're a quick study — good for you.After being symptomatic for so long, it will take a long time to heal, but you will eventually get there. I assume that your doctor advised you that the budesonide will increase your blood sugar, so you might have to adjust your insulin treatment while you are taking it, but that isn't necessarily chiseled in stone.
With this disease, denial just prolongs the misery, so taking charge of your health as you are doing will definitely get you to remission as quickly as possible. You are obviously motivated, and motivated people get results. Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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 Pam,
Welcome.
I am very impressed with your approach and how you've applied what you've read here on the site, especially your diet changes-- to already be GF/SF/EG/ etc is impressive and well, powerful. You have taken great steps to help yourself. I also had to kick Diet Coke
. Like you I believe I would be lost and wondering aimlessly without the collective wisdom and support of everyone on this site.
Looking forward to hearing your progress.
Carol
Welcome.
I am very impressed with your approach and how you've applied what you've read here on the site, especially your diet changes-- to already be GF/SF/EG/ etc is impressive and well, powerful. You have taken great steps to help yourself. I also had to kick Diet Coke
. Like you I believe I would be lost and wondering aimlessly without the collective wisdom and support of everyone on this site. Looking forward to hearing your progress.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Dear Pam,
Welcome to the Potty People. I am amazed and impressed that you went GF/SF/DF/EF so quickly after learning that it makes a difference to so many other people with MC. I'm sorry that it took so long to get diagnosed with MC--7 years is a long time to have symptoms!!
I traveled to Thailand in May for the birth of my grandson. I was nervous about the flight, but I took some Imodium as insurance, and did okay. No problems on the flight there or back. So there is hope that after your system heals, you can travel again.
Love,
Martha
Welcome to the Potty People. I am amazed and impressed that you went GF/SF/DF/EF so quickly after learning that it makes a difference to so many other people with MC. I'm sorry that it took so long to get diagnosed with MC--7 years is a long time to have symptoms!!
I traveled to Thailand in May for the birth of my grandson. I was nervous about the flight, but I took some Imodium as insurance, and did okay. No problems on the flight there or back. So there is hope that after your system heals, you can travel again.
Love,
Martha
Martha
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
Member with type 1 ...
Hi Pam,
Well, you just found your soul sister...Type 1 for forty years and recently developed LC. (diagnosed a year ago)..also on the pump, didn't want the CGM burden.. I see you're proactive in your approach which is what we diabetics do. We know we have to solve our own issues and be active in our own healing.
I joined this bunch recently. Wonderful folks. Caring, generous and VERY, very well informed. They are now my new family. I love them all. I have been down a lot lately, having issues with LC which I haven't been able to solve yet but I am learning fast...
I, too, feel blessed and lucky to have found them.
Regards,
Monique
Well, you just found your soul sister...Type 1 for forty years and recently developed LC. (diagnosed a year ago)..also on the pump, didn't want the CGM burden.. I see you're proactive in your approach which is what we diabetics do. We know we have to solve our own issues and be active in our own healing.
I joined this bunch recently. Wonderful folks. Caring, generous and VERY, very well informed. They are now my new family. I love them all. I have been down a lot lately, having issues with LC which I haven't been able to solve yet but I am learning fast...
I, too, feel blessed and lucky to have found them.
Regards,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
Welcome Pam....,you've come to the right place. I'm to new for advice but I've learned more from these folks than from any doc. After I went GF, from their advice, I had a huge chg in my life for my daily D's. Then after 2 weeks of GF I got budesonide and yee haw I have been normalized since then. A couple times glutinized that was bad so watch everything you eat. These folks will make you feel right at home!!!! Good Luck!!!!
Cathy
Welcome Pam!
Good for you elimination all the stuff that could be causing your D so quickly!
I think you should consider doing the enterolab tests. I immediately cut everything out of my diet, and was eating only chicken and rice. I did the tests and discovered I am sensitive to both chicken and rice. So I gave those up too!
This crown is the BEST! Supportive, encouraging and knowledgeable.
Good for you elimination all the stuff that could be causing your D so quickly!
I think you should consider doing the enterolab tests. I immediately cut everything out of my diet, and was eating only chicken and rice. I did the tests and discovered I am sensitive to both chicken and rice. So I gave those up too!
This crown is the BEST! Supportive, encouraging and knowledgeable.
Dear Pam,
Welcome from Hong Kong! Like your take charge approach. As others have said, it may take time to heal, even with your diet and meds, but it will happen.
Just like Martha, when I am insure on a flight I take Imodium as extra insurance. During the first year of healing that was every time. Now, I usually feel secure enough not to need to. I can "listen" to my body and have learned to sense the risk level.
(By "listen" I do not mean literally hearing those gurgling noises in intestines we sometimes get - an obvious sign of potential problems - but sort of intuitively knowing if things are really calm, or if on the contrary there is a slight cloud that could presage a storm).
Best wishes, Ant
P.S. Tex said
Welcome from Hong Kong! Like your take charge approach. As others have said, it may take time to heal, even with your diet and meds, but it will happen.
Just like Martha, when I am insure on a flight I take Imodium as extra insurance. During the first year of healing that was every time. Now, I usually feel secure enough not to need to. I can "listen" to my body and have learned to sense the risk level.
(By "listen" I do not mean literally hearing those gurgling noises in intestines we sometimes get - an obvious sign of potential problems - but sort of intuitively knowing if things are really calm, or if on the contrary there is a slight cloud that could presage a storm).
Best wishes, Ant
P.S. Tex said
I had not really thought of that before. My father had type 2 diabetes and he also seemed to have suffered from GI problems. With two celiac predisposing genes one must have come from him.Both diabetes and iritis are connected with gluten sensitivity and LC (and other IBDs)
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Welcome to the board Pam!
Something in your post really struck me that I think might help you. I've been battling with this at times horrible disease undiagnosed for the past 16 of the last eighteen years. My official diagnosis didn't come until May of last year and that is when after an exhaustive Internet search decided to try to heal with food changes.
It seemed that no matter what I tried, I would only see a marginal improvement. After a year of this, I came across a dissertation someone did on MC and they listed my, blood pressure meds as having a negative effect on our disease. Once I removed lisinopril within a few more months I actually started getting better. Although I still have quite a journey ahead of me in my path back to health, my improvements are noticeable. Something you Might want to consider. If you do an Internet search, you will find many references to this. Check out this article.
http://www.clinicaladvances.com/article ... -pardi.pdf
I wish you much luck on you journey back to health and a warm welcome to our community
Linda
Something in your post really struck me that I think might help you. I've been battling with this at times horrible disease undiagnosed for the past 16 of the last eighteen years. My official diagnosis didn't come until May of last year and that is when after an exhaustive Internet search decided to try to heal with food changes.
It seemed that no matter what I tried, I would only see a marginal improvement. After a year of this, I came across a dissertation someone did on MC and they listed my, blood pressure meds as having a negative effect on our disease. Once I removed lisinopril within a few more months I actually started getting better. Although I still have quite a journey ahead of me in my path back to health, my improvements are noticeable. Something you Might want to consider. If you do an Internet search, you will find many references to this. Check out this article.
http://www.clinicaladvances.com/article ... -pardi.pdf
I wish you much luck on you journey back to health and a warm welcome to our community
Linda
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Welcome, Pam.
I am very impressed on how quickly you've caught on to the elimination of foods you may be intolerant to. It has taken me longer. I was diagnosed with LC in June of 2010, and found this family the end of Nov., 2011. I know I would be been lost without them. It's difficult to communicate what MC is to anyone who doesn't have it. Even my husband (in spite of all the reading he has done) is still obviously still confused.
I hope you begin to see improvements soon!
Paula
I am very impressed on how quickly you've caught on to the elimination of foods you may be intolerant to. It has taken me longer. I was diagnosed with LC in June of 2010, and found this family the end of Nov., 2011. I know I would be been lost without them. It's difficult to communicate what MC is to anyone who doesn't have it. Even my husband (in spite of all the reading he has done) is still obviously still confused.
I hope you begin to see improvements soon!
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
WELCOME, PAM!! 
I don't usually welcome newbies because I'm afraid my list of intolerances will scare them away. But since you've been lurking awhile, you're familiar with many of us and our issues. I'm impressed that you have been reading and learning for a couple of weeks. You'll find a wealth of information and experience here. We want to help you get better - and you will!
Gloria
I don't usually welcome newbies because I'm afraid my list of intolerances will scare them away. But since you've been lurking awhile, you're familiar with many of us and our issues. I'm impressed that you have been reading and learning for a couple of weeks. You'll find a wealth of information and experience here. We want to help you get better - and you will!
Gloria
You never know what you can do until you have to do it.
Thank you all so much for the warm welcome and insight. I should have included in my history a couple other details (to make more sense of the long protracted diagnosis):
1) I had a celiac screening four years ago and it was negative at the time.
2). Unfortunately I was unaware that aspirin therapy might have any serious consequences (now we know it's a no-no for people with MC or related issues) and my endocrinologist had told me to take 250 mg tabs a day, long before I even had MC symptoms...now with the Lisinopril usage for 20 years-- THE PERFECT STORM!!!!
3). My former GI docs were confinced beyond a doubt that I had
diabetic gastroparesis and thereby were unsuccessfully trying to fix something that wasn't broken instead of testing me for what WAS broken. I was prescribed Domperidone and since it didn't help the D any I continued to bombard myself with Immodium.
Now that I am on Budesonide I can sleep, leave the house, etc. but of course fear the W/D symptoms when I have to start the tapering.
Also, I plan on Enterolab of course and then the MRT tests as well!
Thank you, Tex for the blood sugar warning--- I need almost DOUBLE my usual basal rate of insulin and way more for any carb intake...crazy.
Monique: I DID find my soul sister! I am glad to finally have someone that understands the 'betes ( what my endo calls diabetes) and to have someone like you to blaze the MC trail with.
Again, a heartfelt thank you to everyone for the warm welcome and support.
Best,
Pam
1) I had a celiac screening four years ago and it was negative at the time.
2). Unfortunately I was unaware that aspirin therapy might have any serious consequences (now we know it's a no-no for people with MC or related issues) and my endocrinologist had told me to take 250 mg tabs a day, long before I even had MC symptoms...now with the Lisinopril usage for 20 years-- THE PERFECT STORM!!!!
3). My former GI docs were confinced beyond a doubt that I had
diabetic gastroparesis and thereby were unsuccessfully trying to fix something that wasn't broken instead of testing me for what WAS broken. I was prescribed Domperidone and since it didn't help the D any I continued to bombard myself with Immodium.
Now that I am on Budesonide I can sleep, leave the house, etc. but of course fear the W/D symptoms when I have to start the tapering.
Also, I plan on Enterolab of course and then the MRT tests as well!
Thank you, Tex for the blood sugar warning--- I need almost DOUBLE my usual basal rate of insulin and way more for any carb intake...crazy.
Monique: I DID find my soul sister! I am glad to finally have someone that understands the 'betes ( what my endo calls diabetes) and to have someone like you to blaze the MC trail with.
Again, a heartfelt thank you to everyone for the warm welcome and support.
Best,
Pam