Hello,
I have had CC for about 12 years, and was diagnosed shortly after a celiac disease diagnosis. I've been on a very strict GF diet for that entire time. I have experimented with a variety of diets/food eliminations over the years with little success. I did get some relief from a 6 moth paleo diet, but gave this up about 5 years ago when I got pregnant and had bad morning sickness/couldn't eat veggies or meat.
My symptoms were pretty minimal for most of my time with CC--3-4 episodes of D/urgency in the morning with occasional flare ups--and I managed with immodium well. About a year ago, things got worse, and then dramatically worse over the past summer. I have to take 2 immodium at night to avoid being up all night with D, and still have D throughout the day. No immediate food triggers other than caffeine.
This fall I finally broke down and tried budesonide--I was afraid of steroids before that but fed up. 9mg worked great! Did that for 3 months with good results within days. Then did 2 weeks on 6mg and 2 weeks on 3mg. Symptoms immediately came back after 6mg.
On top of this, I'm trying to conceive again (no success so far-- 5 miscarriages, failed IVF, lots of heartbreak) and want to limit inflammation as well as exposure to meds.
So--any ideas? See if my doctor will put be back on budesonide? I'd like to try the Enterolab tests but unsure which ones to do. I can also do a full-on elimination diet, but I'd love to have a little more info going in since I have a full time job/have done eliminations before with limited success/cook for my family who are all "normal." (more or less :)
Many thanks for this forum and the associated website. I've avoided google-ing MC for years since there is never any info, and I'm thrilled to find other people like me who aren't satisfied with their treatment.
-Sonia
longtime MC, new to treatment
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: longtime MC, new to treatment
Hi Sonia,
Welcome to the group. To get you started in selecting a diet that will work for you, please note that all of us are sensitive to gluten, and most of us are sensitive to casein, and therefore all dairy products. Most of us are also sensitive to soy and chicken eggs. As long as you been reacting, you're probably reacting to many other foods by now, also. Because of that, the EnteroLab test results would probably save you a huge amount of time, compared with Using an elimination diet. If you haven't already seen it, the issue of the newsletter published by the Microscopic Colitis Foundation, that you can download by clicking on the following link, would surely be very helpful.
https://www.microscopiccolitisfoundatio ... 479987.pdf
But if you prefer to try an elimination diet, you can also read the details of selecting a diet at the link below:
viewtopic.php?f=79&t=22328
incidentally, CC depletes magnesium. Morning sickness is a symptom of magnesium deficiency, as a result of the changing hormonal situation during pregnancy, so it is often worse than normal for microscopic colitis patients. It can usually be prevented by building up magnesium reserves prior to becoming pregnant.
Because the antibodies associated with gluten have a 120 day half-life, it takes a month or so to get the antibody level down sufficiently for the immune system to even notice other types of antibodies, after we remove gluten from our diet. Since you've been gluten free for many years, you should see improvements within less than a week, after you change your diet to eliminate your other food sensitivities, because the antibodies associated with most other foods have only a 5 or 6 day half-life.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. To get you started in selecting a diet that will work for you, please note that all of us are sensitive to gluten, and most of us are sensitive to casein, and therefore all dairy products. Most of us are also sensitive to soy and chicken eggs. As long as you been reacting, you're probably reacting to many other foods by now, also. Because of that, the EnteroLab test results would probably save you a huge amount of time, compared with Using an elimination diet. If you haven't already seen it, the issue of the newsletter published by the Microscopic Colitis Foundation, that you can download by clicking on the following link, would surely be very helpful.
https://www.microscopiccolitisfoundatio ... 479987.pdf
But if you prefer to try an elimination diet, you can also read the details of selecting a diet at the link below:
viewtopic.php?f=79&t=22328
incidentally, CC depletes magnesium. Morning sickness is a symptom of magnesium deficiency, as a result of the changing hormonal situation during pregnancy, so it is often worse than normal for microscopic colitis patients. It can usually be prevented by building up magnesium reserves prior to becoming pregnant.
Because the antibodies associated with gluten have a 120 day half-life, it takes a month or so to get the antibody level down sufficiently for the immune system to even notice other types of antibodies, after we remove gluten from our diet. Since you've been gluten free for many years, you should see improvements within less than a week, after you change your diet to eliminate your other food sensitivities, because the antibodies associated with most other foods have only a 5 or 6 day half-life.
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.
Re: longtime MC, new to treatment
Hi Sonia,
Do you have a a copy of Tex's book? It is a good resource for us.
I think paleo is also a generally safe way to go for many of us.
Welcome, welcome, welcome!
Do you have a a copy of Tex's book? It is a good resource for us.
I think paleo is also a generally safe way to go for many of us.
Welcome, welcome, welcome!
Re: longtime MC, new to treatment
Thank you so much for this thoughtful response--these articles/posts were very helpful. I am going to give the EnteroLab tests a try...
And I did have really bad morning sickness with my son so I will keep this magnesium issue in mind should I be fortunate enough to have another child.
-Sonia
And I did have really bad morning sickness with my son so I will keep this magnesium issue in mind should I be fortunate enough to have another child.
-Sonia
Re: longtime MC, new to treatment
Hi, Sonia. Welcome! I agree with the other suggestions already given. EnteroLab testing was very helpful to me as was Tex's book. I have also learned a lot by reading through the forums on here. This group is the BEST resource for helping you to find remission. When I first found them and they told me that I would get my life back I found it hard to believe - but I have been in remission for seven years due to their help.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
Re: longtime MC, new to treatment
I also find relief a little hard to believe but I'm looking forward to trying something new!
Re: longtime MC, new to treatment
Just ordered my enterolab tests a few days ago. In the mean time, would it mess up my test results to start eliminating foods?
Thanks!
Sonia
Thanks!
Sonia
Re: longtime MC, new to treatment
Hi Sonia,
No, eliminating foods now will not affect any of your test results. It will simply give you a head start on your recovery journey, so that you should be able to get this disease under control sooner. You can eliminate anything you want, but gluten takes longer than any other food allergen to get out of our systems, so it's usually beneficial to remove it from the diet as soon as possible, in order to speed up healing of the intestines.
I hope your journey to recovery goes well, but don't be disappointed if you have a few setbacks along the way, because that happens to most of us. Judge your progress on a weekly basis, rather than a daily basis. And please don't hesitate to ask, if any questions arise.
Tex
No, eliminating foods now will not affect any of your test results. It will simply give you a head start on your recovery journey, so that you should be able to get this disease under control sooner. You can eliminate anything you want, but gluten takes longer than any other food allergen to get out of our systems, so it's usually beneficial to remove it from the diet as soon as possible, in order to speed up healing of the intestines.
I hope your journey to recovery goes well, but don't be disappointed if you have a few setbacks along the way, because that happens to most of us. Judge your progress on a weekly basis, rather than a daily basis. And please don't hesitate to ask, if any questions arise.
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.
Re: longtime MC, new to treatment
Thank you! I've been gf for over a decade so I won't have a problem with that part. I'm going to try to start with other grains, dairy, and eggs. Thankfully I'm a creative cook:)