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Hi, I was diagnosed by biopsy as having collagenous colitis almost 3 weeks ago. I started taking Entocort today. I don't do well with steroids because I'm also type 1 diabetic, so I'm hoping that my blood sugar doesn't get wacko.
My GI is of the opinion that this is not food related and other than giving up dairy and caffeine that I can eat whatever I want. I don't think his opinion is correct. I'm thinking about getting the Enterolab tests done, but I'm not sure which ones would be best for me. Here's a little history...47 years old, have had bouts of D that have resolved on their own since my mid 20s, diagnosed with type 1diabetes at 23, been on insulin pump for 13 years, diagnosed with Hashimoto's thyroiditis at 36, take synthroid for that, diagnosed with fibromyalgia at 40, tested negative for Celiac disease with blood test done lat year I have always believed there had to be a common factor. After reading Dr. Fine's info, I'm thinking it's got to have something to do with food sensitivities.
I am so happy that I found this site. You all are a wealth of information. Any input would be appreciated.
Sorry for the long post!
Denise
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Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Denise!!
IMHO, you certainly seem to be a poster child for undiagnosed celiac. Type 1 diabetes and Hashimoto's Thyroiditis are the autoimmune diseases most closely linked to celiac disease. Fibromyalgia is very common too after years of undiagnosed celiac. Your doctor letting you go after negative bloodwork seems irresponsible (bloodwork is often false negative). If it were me, I would order Enterolab testing before starting a gluten free diet - the bundled package that includes gluten, dairy, soy, egg AND the gene test. Perhaps more if you can afford it. I ordered the bundle for myself as well. If you test positive for gluten, perhaps you can convince your doc to do an endoscopy and biopsies just to have the official diagnosis, but otherwise, Enterolab results should be plenty to base diet restrictions on.
I've read several accounts of patients with Hashimoto's, Fibromyalgia or diabetes going gluten free and experiencing significant improvement in their associated autoimmune diseases. I hesitate to say cure, but some people do get some level of resolution. I hope that might be the case for you. I had persistent lower back and hip pain that completely disappeared after a couple of weeks on the GF diet.
I'm glad you found us. Please keep us posted on your progress!
IMHO, you certainly seem to be a poster child for undiagnosed celiac. Type 1 diabetes and Hashimoto's Thyroiditis are the autoimmune diseases most closely linked to celiac disease. Fibromyalgia is very common too after years of undiagnosed celiac. Your doctor letting you go after negative bloodwork seems irresponsible (bloodwork is often false negative). If it were me, I would order Enterolab testing before starting a gluten free diet - the bundled package that includes gluten, dairy, soy, egg AND the gene test. Perhaps more if you can afford it. I ordered the bundle for myself as well. If you test positive for gluten, perhaps you can convince your doc to do an endoscopy and biopsies just to have the official diagnosis, but otherwise, Enterolab results should be plenty to base diet restrictions on.
I've read several accounts of patients with Hashimoto's, Fibromyalgia or diabetes going gluten free and experiencing significant improvement in their associated autoimmune diseases. I hesitate to say cure, but some people do get some level of resolution. I hope that might be the case for you. I had persistent lower back and hip pain that completely disappeared after a couple of weeks on the GF diet.
I'm glad you found us. Please keep us posted on your progress!
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irisheyes13
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- Joined: Fri Jan 28, 2011 2:46 pm
- Location: Pittsburgh, PA, United States
Denise!You sure have been through the ringer with more than your share of autoimmune diseases.
It's nice to meet but I'm sorry it had to be under these circumstances. It sounds like you have been on top of all the issues you have been faced with and you'll find that most of us here have chosen diet as a way to deal with our MC. Many have lots of success with Entocort along with dietary changes. I know that steroids can impact your t1 diabetes in a big, bad way but don't know if the fact that Entocort is primarily absorbed in the intestines might minimize the effect on your blood sugars or not. Have you spoken with your endocrinologist about it?There will be many to follow with lots of good advice for you. Enterolab testing has been extremely helpful in determining our food sensitivities. As a matter of fact, my 18 y/o daughter was just diagnosed with t1 diabetes last month and I just ordered Enterolab testing on her. She isn't showing any of the obvious signs of Celiac or MC but we are trying to be proactive since her chances are significantly higher of being diagnosed with another autoimmune disease. I believe the odds of a t1 diabetic developing Celiac disease is 1 in 10. As far as which tests are best is a personal decision but I would definitely get the genetic testing as well as gluten, dairy and soy at a minimum along with the transglutaminase. They just started offering many of the additional testing for the other proteins about 2 weeks ago which is fantastic. If your insurance will cover the testing or your budget allows, I would get as much done as possible but that is only my recommendation.
We have much in common in that I'm also 47, have CC, thyroid disease and fibromyalgia and tested negative for Celiac disease. I can tell you that since going gluten, dairy and soy free 3 months ago many of my fibro symptoms have eased up although have not gone away completely. My thyroid numbers have gotten better and my medications have been lowered as well. I don't have any documented proof that these changes are due to my diet but I truly believe that all of these diseases are interrelated.
You've come to a wonderful place with lots of knowledge and compassion. Keep us updated on how you are doing on the Entocort and how you are progressing.
Kelly
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
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irisheyes13
- Adélie Penguin
- Posts: 212
- Joined: Fri Jan 28, 2011 2:46 pm
- Location: Pittsburgh, PA, United States
Welcome Denise,
So sorry for all you have been through. You have come to the right place for help. I tried to "fix" this with meds but they didn't work for me. Diet has helped me the most. Some just have to eliminate gluten but other must eliminate the dairy, soy and maybe a host of others. Sometimes it is just NSAIDS. Read, do the test(s) and ask questions. My muscle aches went away when I gave up fructose and gluten. I hope you don't have to give up fructose.
Pat
So sorry for all you have been through. You have come to the right place for help. I tried to "fix" this with meds but they didn't work for me. Diet has helped me the most. Some just have to eliminate gluten but other must eliminate the dairy, soy and maybe a host of others. Sometimes it is just NSAIDS. Read, do the test(s) and ask questions. My muscle aches went away when I gave up fructose and gluten. I hope you don't have to give up fructose.
Pat
Welcome, Denise! It sounds as though your thinking is ahead of your GI doc's - and moving forward, you will be the true expert on what works for you. It does seem that so many autoimmune disorders are connected (and for many of them, removing gluten and other offending foods from the diet can help, in some cases enormously).
I am awaiting my Enterolab results (including some of the newer tests). I believe their gluten tests remain sensitive for a long period after a gluten-free diet is adopted. So if you're planning to do that test soon, you could start a GF experiment to see if you feel better. Over time, the anti-gliadin (wheat protein) antibodies would dwindle, but it does take a long time (others, like egg or soy, might diminish more quickly).
I hope the Entocort is giving you relief, without wacking out your blood sugar.
All my best,
Sara
I am awaiting my Enterolab results (including some of the newer tests). I believe their gluten tests remain sensitive for a long period after a gluten-free diet is adopted. So if you're planning to do that test soon, you could start a GF experiment to see if you feel better. Over time, the anti-gliadin (wheat protein) antibodies would dwindle, but it does take a long time (others, like egg or soy, might diminish more quickly).
I hope the Entocort is giving you relief, without wacking out your blood sugar.
All my best,
Sara
Thanks to everyone for your words of wisdom! I believe the Enterolab tests are the way to go.
Kelly - We do have a lot of similarities! I am so sorry that your daughter has been diagnosed with diabetes. Is she on insulin yet? The insulin pump is the way to go if you can get your insurance to pay for it. It has made my life soooo much easier. I also have a continuous glucose monitor. It checks my blood sugar every 5 minutes. It has really helped me avoid the lows. So far, my blood sugar has been good. Keeping my fingers crossed that it will stay that way!
Thanks again, everyone!
Denise
Kelly - We do have a lot of similarities! I am so sorry that your daughter has been diagnosed with diabetes. Is she on insulin yet? The insulin pump is the way to go if you can get your insurance to pay for it. It has made my life soooo much easier. I also have a continuous glucose monitor. It checks my blood sugar every 5 minutes. It has really helped me avoid the lows. So far, my blood sugar has been good. Keeping my fingers crossed that it will stay that way!
Thanks again, everyone!
Denise
Welcome, Denise!! 
I'm not sure how Entocort affects diabetes. I've been taking it for over 3 1/2 years and haven't had any problems - but I don't have diabetes. Entocort allowed me to modify my diet while giving my life back.
Most of us have found it necessary to modify our diets in order to achieve remission from MC. You are steps ahead of most because you already recognize the diet connection to MC.
Keep reading - there is a wealth of information and experience here. You will get your life back. We are here to help you.
Gloria
I'm not sure how Entocort affects diabetes. I've been taking it for over 3 1/2 years and haven't had any problems - but I don't have diabetes. Entocort allowed me to modify my diet while giving my life back.
Most of us have found it necessary to modify our diets in order to achieve remission from MC. You are steps ahead of most because you already recognize the diet connection to MC.
Keep reading - there is a wealth of information and experience here. You will get your life back. We are here to help you.
Gloria
You never know what you can do until you have to do it.
My husband has type II diabetes. I'm wondering what kind of glucose monitor you are using. Is it only for people with an insulin pump and type I diabetes?Denise wrote:I also have a continuous glucose monitor. It checks my blood sugar every 5 minutes.
Gloria
You never know what you can do until you have to do it.
Denise,
I was about to go meet a friend for coffee, when it popped into my head that your GI doc told you to avoid caffeine. That might be good advice for you, but I did want to mention that many of us here do tolerate coffee or tea. Some do not, of course (and you may not be in the mood to risk an experiment). But I wanted to mention it, in case it's a particularly pleasant part of your day. I have one generous cup every morning, black and unsweetened (and that was my habit before MC, too). I've asked my husband to experiment with using my homemade nutmilk in coffee. (It's delicious, but it separates because it doesn't have the stabilizers used in commercially available products.)
Hope you're feeling good,
Sara
I was about to go meet a friend for coffee, when it popped into my head that your GI doc told you to avoid caffeine. That might be good advice for you, but I did want to mention that many of us here do tolerate coffee or tea. Some do not, of course (and you may not be in the mood to risk an experiment). But I wanted to mention it, in case it's a particularly pleasant part of your day. I have one generous cup every morning, black and unsweetened (and that was my habit before MC, too). I've asked my husband to experiment with using my homemade nutmilk in coffee. (It's delicious, but it separates because it doesn't have the stabilizers used in commercially available products.)
Hope you're feeling good,
Sara
Hi Denise and welcome to this wonderful place of "caring and sharing". You will find 10+ years of wisdom and shared experiences here, so take your time with browsing the board - there is a lot to digest.
I had MC for 10+ years before discovering the diet connection. My GI doc told me that MC is not diet related and I should be able to eat anything I wanted. I opted not to take steroids, and decided to live with the big D. and hope for spontaneous remission, which was offered to me by my GI as a good possibility.
However, as years went by with no signs of "remission", I got desperate and started doing research on my own. That's how I came across Dr. Fine's website and dropped gluten from my diet. Shortly after that, I discovered the Potty People, and my MC journey thereafter is pretty much documented here.
I wish you all the best on your road to recovery. You will discover by reading lots here that each person's journey to healing is different, and you will find your own best path, helped along by the kind assistance of people here.
Love,
Kari
I had MC for 10+ years before discovering the diet connection. My GI doc told me that MC is not diet related and I should be able to eat anything I wanted. I opted not to take steroids, and decided to live with the big D. and hope for spontaneous remission, which was offered to me by my GI as a good possibility.
However, as years went by with no signs of "remission", I got desperate and started doing research on my own. That's how I came across Dr. Fine's website and dropped gluten from my diet. Shortly after that, I discovered the Potty People, and my MC journey thereafter is pretty much documented here.
I wish you all the best on your road to recovery. You will discover by reading lots here that each person's journey to healing is different, and you will find your own best path, helped along by the kind assistance of people here.
Love,
Kari
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irisheyes13
- Adélie Penguin
- Posts: 212
- Joined: Fri Jan 28, 2011 2:46 pm
- Location: Pittsburgh, PA, United States
Hi Denise,
Good luck with moving forward with Enterolab testing and feel free to ask any questions along the way. I found this wonderful site a few months ago and I still am learning so much by reading through the older threads. There truly is so much wisdom on this board that you will never find through a physician because there is so little known about MC.
My daughter is not on an insulin pump or CGM yet but we are hoping to transition her before she leaves for college. The insurance company is giving us a fight however so I don't know if it will happen that quickly. She is doing fairly well with insulin pens right now although she is experiencing frequent lows and they are scary. So glad to hear you are managing your diabetes so well (its comforting when I hear positive stories from people who have had lots of long term success:) Hopefully you'll be able to tolerate and have success with the Entocort without disrupting your blood sugars over time. It's definitely a balancing act. You may find that making dietary changes like removing gluten will help with diabetes management as well.
I find it interesting that your doctor recommended giving up dairy and caffeine. Did he explain why and how that impacts MC?
We're all rallying for you so keep us updated on your progress.
Good luck with moving forward with Enterolab testing and feel free to ask any questions along the way. I found this wonderful site a few months ago and I still am learning so much by reading through the older threads. There truly is so much wisdom on this board that you will never find through a physician because there is so little known about MC.
My daughter is not on an insulin pump or CGM yet but we are hoping to transition her before she leaves for college. The insurance company is giving us a fight however so I don't know if it will happen that quickly. She is doing fairly well with insulin pens right now although she is experiencing frequent lows and they are scary. So glad to hear you are managing your diabetes so well (its comforting when I hear positive stories from people who have had lots of long term success:) Hopefully you'll be able to tolerate and have success with the Entocort without disrupting your blood sugars over time. It's definitely a balancing act. You may find that making dietary changes like removing gluten will help with diabetes management as well.
I find it interesting that your doctor recommended giving up dairy and caffeine. Did he explain why and how that impacts MC?
We're all rallying for you so keep us updated on your progress.
Kelly
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Hi Denise,
Welcome to the board. You've already received a lot of good responses, so I'll just address your diabetes/corticosteroid concern.
Frankly, I would be very reluctant to use a corticosteroid in your situation, because they can cause diabetic symptoms in some people with normal blood sugar levels, and there are cases where people with pre-diabetic markers have been transformed to fully-developed diabetes very soon after taking a corticosteroid treatment program.
The increase in blood sugar levels following the use of a corticosteroid is believed to be due to chromium depletion caused by the corticosteroids. This can be countered by taking a chromium supplement, such as chromium picolinate, but I have no idea whether or not this concept is embraced by mainstream medicine. You might have to consult with a naturopath if you are interested in pursuing this line of treatment.
http://www.ncbi.nlm.nih.gov/pubmed/10229312
That article was published about 12 years ago, and I haven't seen any significant research done since then, (but of course, just because I haven't seen it doesn't mean that it doesn't exist - maybe I just didn't look in the right places).
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. You've already received a lot of good responses, so I'll just address your diabetes/corticosteroid concern.
Frankly, I would be very reluctant to use a corticosteroid in your situation, because they can cause diabetic symptoms in some people with normal blood sugar levels, and there are cases where people with pre-diabetic markers have been transformed to fully-developed diabetes very soon after taking a corticosteroid treatment program.
The increase in blood sugar levels following the use of a corticosteroid is believed to be due to chromium depletion caused by the corticosteroids. This can be countered by taking a chromium supplement, such as chromium picolinate, but I have no idea whether or not this concept is embraced by mainstream medicine. You might have to consult with a naturopath if you are interested in pursuing this line of treatment.
http://www.ncbi.nlm.nih.gov/pubmed/10229312
That article was published about 12 years ago, and I haven't seen any significant research done since then, (but of course, just because I haven't seen it doesn't mean that it doesn't exist - maybe I just didn't look in the right places).
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, everyone! Day 2 of endocort and haven't had D since this morning! Blood sugars still running fairly normal. Keeping my fingers crossed!
Gloria - I don't think you can get the continuous glucose monitor unless you're on the insulin pump, but I could be wrong. You can check the website, minimed.com, and find out for sure.
Kelly - I hope your daughter is able to get on the pump before college. It is so frustrating to have to revolve your whole day around the time of your next meal. The pump allows me to eat when I want and not eat if I don't want to.
Rex - I've heard that chromium is supposed to lower your blood sugar. I haven't ever tried it though. My blood sugar is holding steady. I got the ok from my endocrinologist to take the endocort. She got really upset when I was prescribed prednisone by a nurse practitioner who didn't know a thing about diabetes. I really expected her to say no to the endocort. I found it interesting when she told me she has several "pump" patients that have CC.
Take care and thanks again for the warm welcome and advice!
Denise
Gloria - I don't think you can get the continuous glucose monitor unless you're on the insulin pump, but I could be wrong. You can check the website, minimed.com, and find out for sure.
Kelly - I hope your daughter is able to get on the pump before college. It is so frustrating to have to revolve your whole day around the time of your next meal. The pump allows me to eat when I want and not eat if I don't want to.
Rex - I've heard that chromium is supposed to lower your blood sugar. I haven't ever tried it though. My blood sugar is holding steady. I got the ok from my endocrinologist to take the endocort. She got really upset when I was prescribed prednisone by a nurse practitioner who didn't know a thing about diabetes. I really expected her to say no to the endocort. I found it interesting when she told me she has several "pump" patients that have CC.
Take care and thanks again for the warm welcome and advice!
Denise