Has anyone else been diagnosed with and/or treated for MC while pregnant? I am 21.5 weeks pregnant and was recently diagnosed with MC (about 3 weeks ago). Just wondering if anyone else is/has been in the same boat. My GI doctor says he's never diagnosed or treated anyone for MC in the middle of pregnancy in his 25 years of practice.
I started having symptoms around 8 weeks pregnant, and my OB doctor thought that it was just "normal pregnancy digestive issues" and that I was just a normal digestively uncomfortable pregnant woman. But when my symptoms continued to get worse and worse (D all day, all night, no sleep, extremely limited diet and no toleration of any prenatal multivitamin or supposed "gut improving" supplements like probiotics and l-glutamine) and I continued calling her, my OB doctor finally ordered some testing to rule out bacterial infections, etc. When all the tests came back negative, she referred me to a GI doctor. I had a flexible sigmoidoscopy (no full colonoscopy because of pregnancy), and my GI doctor took biopsies and confirmed MC diagnosis.
My GI doctor initially recommended taking pepto-bismol tablets (which I took for 4 days and it seemed to help some), but my OB doctor said NO to pepto while pregnant. They conferred, and since then, I've been taking 9 mg Entocort every day (supposed to taper to 6 mg/day after a month and then to 3mg/day after another month), but it's only been so-so effective. It's helped to control my symptoms some (especially at night) but has not allowed me to vary my diet much or tolerate any prenatal vitamin.
My GI doctor is convinced that my MC is wholly unrelated and just coincidental to my pregnancy, but I'm holding out hope that it was triggered by a change in hormones, etc. due to pregnancy and that maybe the symptoms will dissipate once the baby is born. Stranger things have happened... has anyone else had a similar experience?
Diagnosis and/or treatment during pregnancy?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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caranorton
- Posts: 2
- Joined: Mon Feb 09, 2015 4:33 pm
- Location: Boulder, CO
Hi Cara,
Welcome to our Internet family. I'm sorry to hear that you're having symptoms while pregnant. MC is aggravating enough without a pregnancy to complicate the situation (and vice versa). It's possible that your GI specialist might be correct (and the timing was just a coincidence), but the odds strongly favor your interpretation of the situation, because MC is strongly affected by hormonal changes. Some women go into remission during pregnancy, while for others, their symptoms become worse. We suspect that this odd arrangement might be associated with mast cell issues, but as far as medical research is concerned, there is no known official medical explanation for why some individuals experience remission, while others go the other way, during pregnancy.
To the best of my knowledge, we have no members who were diagnosed while pregnant. We have a few members who have been through pregnancy after diagnosis, but none that I am aware of who were diagnosed while pregnant. And this board will be 10 years old, in May.
If Entocort will not control your symptoms, then your only practical option is certain diet changes. When the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity (and usually several other food sensitivities) are triggered at the same time. This causes us to produce antibodies to gluten (and certain other foods) in our intestines, and the antibodies trigger immune system events that lead to the inflammation that causes MC, and the process tends to be self-perpetuating, which can keep the reaction going indefinitely. Despite what your GI specialist will tell you, the diet works, and it's the only way that we can get our life back when the medications don't work. Besides, diet changes are much safer for your baby than the drugs that GI specialists prescribe to treat this disease.
While you are taking Entocort, simply avoiding gluten and all dairy products should allow you to control your symptoms. But we have to absolutely avoid all traces of gluten and casein (the primary protein in all dairy products), because we are sensitive to even tiny trace amounts. IOW, traces (whether accidental or intentional) are usually enough to keep the reaction going. Vitamins and any other supplements have to be free of gluten, casein, lactose, and any other ingredient to which we might be sensitive. Many of us are sensitive to soy, and all it's derivatives (such as the soy oil found in so many supplements).
Yes, it is possible that you might go into remission after your baby is born, but depending on hormonal balances, in most cases the status does not change until after lactation ceases (when all hormone levels return to normal). Remember that none of this is official medical advice, it's just a reflection of the accumulated experience of the members of this discussion board.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I'm sorry to hear that you're having symptoms while pregnant. MC is aggravating enough without a pregnancy to complicate the situation (and vice versa). It's possible that your GI specialist might be correct (and the timing was just a coincidence), but the odds strongly favor your interpretation of the situation, because MC is strongly affected by hormonal changes. Some women go into remission during pregnancy, while for others, their symptoms become worse. We suspect that this odd arrangement might be associated with mast cell issues, but as far as medical research is concerned, there is no known official medical explanation for why some individuals experience remission, while others go the other way, during pregnancy.
To the best of my knowledge, we have no members who were diagnosed while pregnant. We have a few members who have been through pregnancy after diagnosis, but none that I am aware of who were diagnosed while pregnant. And this board will be 10 years old, in May.
If Entocort will not control your symptoms, then your only practical option is certain diet changes. When the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity (and usually several other food sensitivities) are triggered at the same time. This causes us to produce antibodies to gluten (and certain other foods) in our intestines, and the antibodies trigger immune system events that lead to the inflammation that causes MC, and the process tends to be self-perpetuating, which can keep the reaction going indefinitely. Despite what your GI specialist will tell you, the diet works, and it's the only way that we can get our life back when the medications don't work. Besides, diet changes are much safer for your baby than the drugs that GI specialists prescribe to treat this disease.
While you are taking Entocort, simply avoiding gluten and all dairy products should allow you to control your symptoms. But we have to absolutely avoid all traces of gluten and casein (the primary protein in all dairy products), because we are sensitive to even tiny trace amounts. IOW, traces (whether accidental or intentional) are usually enough to keep the reaction going. Vitamins and any other supplements have to be free of gluten, casein, lactose, and any other ingredient to which we might be sensitive. Many of us are sensitive to soy, and all it's derivatives (such as the soy oil found in so many supplements).
Yes, it is possible that you might go into remission after your baby is born, but depending on hormonal balances, in most cases the status does not change until after lactation ceases (when all hormone levels return to normal). Remember that none of this is official medical advice, it's just a reflection of the accumulated experience of the members of this discussion board.
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 Cara,
Tex, didn't CAMary go through a pregnancy taking mesalamine? I don't know if she was diagnosed prior to MC or not; I think she may have improvement in the MC during pregnancy, but I may be wrong about that.
Anyway, I'm sure she wouldn't mind a PM from you, if she is still registered on this forum. I see her once in a while on Facebook.....I believe she is on vacation in Hawaii just now.
Polly
Tex, didn't CAMary go through a pregnancy taking mesalamine? I don't know if she was diagnosed prior to MC or not; I think she may have improvement in the MC during pregnancy, but I may be wrong about that.
Anyway, I'm sure she wouldn't mind a PM from you, if she is still registered on this forum. I see her once in a while on Facebook.....I believe she is on vacation in Hawaii just now.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
Good thinking. Your prompting led me to do a search, where I found that Mary was indeed taking Asacol (at least for the first half of her pregnancy). She apparently had been diagnosed 2 years earlier. You have an excellent memory, because she mentioned that she had been on the GF diet for about 8 months when she became pregnant, and at about 20 weeks (of pregnancy), her symptoms disappeared. Her post (from almost 10 years ago) containing that information is the last in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=1956
Thanks,
Tex
Good thinking. Your prompting led me to do a search, where I found that Mary was indeed taking Asacol (at least for the first half of her pregnancy). She apparently had been diagnosed 2 years earlier. You have an excellent memory, because she mentioned that she had been on the GF diet for about 8 months when she became pregnant, and at about 20 weeks (of pregnancy), her symptoms disappeared. Her post (from almost 10 years ago) containing that information is the last in the thread at the following link:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=1956
Thanks,
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.
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caranorton
- Posts: 2
- Joined: Mon Feb 09, 2015 4:33 pm
- Location: Boulder, CO
Thanks so much, Tex and Polly, for your responses! I am surprised that no one else on this board has been diagnosed during pregnancy, but I suppose the timing of diagnosis doesn't really matter that much :). Thanks also for giving me some direction and pointers on which to follow up. I will definitely be ordering your book and doing some reading about mast cells.
So far, Entocort has been doing an ok job - and my GI doctor told me to take Imodium along with the Entocort if it gets worse, which I have been doing from time to time. I guess I will see what happens once I finish my 12 week course of Entocort, which will be around 30 weeks in my pregnancy.
This is not the first time I've had digestive issues, so perhaps I've had MC for a while and had minor flares from time to time. However, it's never been so serious that I've had to go to a doctor to figure out what's going on. I've never experienced anything nearly as bad as what I've been through the last several months. During my first pregnancy in 2012, I had similar issues (but on a MUCH lesser scale) until about week 16, when they just went away (around the time I switched to a different prenatal MV -- tried that this time, a few times, but it didn't help). I thought maybe things would die down at 16 weeks this time, but everything just continued in a downward spiral.
As far as diet is concerned, I've been following a mostly Paleo diet for almost 5 years now -- not because of any specific GI issues or known food intolerances, but just because I generally feel better when I eat that way. So, for the last several years, I haven't regularly eaten gluten, dairy, soy, other grains, etc. I wouldn't go so far as to say that I've been strictly GF, DF, soy free, etc., but I have tried to avoid them. I have always eaten eggs, meat/poultry, and all fruits, vegetables and nuts/seeds with no problems (until recently). With this pregnancy, I was pretty nauseous for the first several weeks, and I started eating some dairy (cheese) which seemed to help with the nausea. But perhaps that, combined with the changing hormones, is what triggered this flare? I have tried eating cheese a few times since beginning Entocort because my OB doctor suggested I try it again (for calcium, I guess), and it always makes things much worse. I was lactose intolerant as a kid but seemed to grow out of it around age 10. Maybe it's back (or maybe I never really grew out of it)?... Will be avoiding dairy again at any rate. And will be making sure to avoid trace levels of gluten and soy too, which I have definitely not been as strict about. Lately (since mid December), my diet has been limited to chicken, eggs, deli ham, rice, rice pasta, bananas, potatoes, and some nut/seed butter. In the last week or so, I have tried adding back mushrooms, carrots, cantaloupe, tilapia and some GF bread. So far, it's been ok. I did try some apple (no peel) and cheese (as I mentioned) - both were a no go. Guess it's just trial and error for the most part?
Thanks again for the suggestions!!
So far, Entocort has been doing an ok job - and my GI doctor told me to take Imodium along with the Entocort if it gets worse, which I have been doing from time to time. I guess I will see what happens once I finish my 12 week course of Entocort, which will be around 30 weeks in my pregnancy.
This is not the first time I've had digestive issues, so perhaps I've had MC for a while and had minor flares from time to time. However, it's never been so serious that I've had to go to a doctor to figure out what's going on. I've never experienced anything nearly as bad as what I've been through the last several months. During my first pregnancy in 2012, I had similar issues (but on a MUCH lesser scale) until about week 16, when they just went away (around the time I switched to a different prenatal MV -- tried that this time, a few times, but it didn't help). I thought maybe things would die down at 16 weeks this time, but everything just continued in a downward spiral.
As far as diet is concerned, I've been following a mostly Paleo diet for almost 5 years now -- not because of any specific GI issues or known food intolerances, but just because I generally feel better when I eat that way. So, for the last several years, I haven't regularly eaten gluten, dairy, soy, other grains, etc. I wouldn't go so far as to say that I've been strictly GF, DF, soy free, etc., but I have tried to avoid them. I have always eaten eggs, meat/poultry, and all fruits, vegetables and nuts/seeds with no problems (until recently). With this pregnancy, I was pretty nauseous for the first several weeks, and I started eating some dairy (cheese) which seemed to help with the nausea. But perhaps that, combined with the changing hormones, is what triggered this flare? I have tried eating cheese a few times since beginning Entocort because my OB doctor suggested I try it again (for calcium, I guess), and it always makes things much worse. I was lactose intolerant as a kid but seemed to grow out of it around age 10. Maybe it's back (or maybe I never really grew out of it)?... Will be avoiding dairy again at any rate. And will be making sure to avoid trace levels of gluten and soy too, which I have definitely not been as strict about. Lately (since mid December), my diet has been limited to chicken, eggs, deli ham, rice, rice pasta, bananas, potatoes, and some nut/seed butter. In the last week or so, I have tried adding back mushrooms, carrots, cantaloupe, tilapia and some GF bread. So far, it's been ok. I did try some apple (no peel) and cheese (as I mentioned) - both were a no go. Guess it's just trial and error for the most part?
Thanks again for the suggestions!!
Yes, unless you order the stool tests offered by EnteroLab in Dallas, TX, tracking down food sensitivities is a trial and error process.
Actually, everyone who has enteritis (intestinal inflammation) is lactose-intolerant, because the small intestine stops producing the lactase enzyme when it is inflamed, so that leaves us with no way to digest lactose. We regain the ability to produce lactase as the inflammation is controlled. But with MC, it's not lactase that's the main problem with dairy products — it's casein, the primary protein in all dairy products. Most of us produce antibodies to casein, and this of course promotes additional inflammation.
If you're already following a paleo diet, just closing any gaps, and minimizing fiber may be sufficient to maintain remission after you wean off the Entocort. Fiber is contraindicated with MC, because it is extremely abrasive on intestinal mucosal tissue when the mucosa is already hyperinflamed. Therefore we minimize fiber until after our intestines are able to heal.
Here are links to some short articles that offer some basic information on how mast cells are associated with MC:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
You're very welcome,
Tex
Actually, everyone who has enteritis (intestinal inflammation) is lactose-intolerant, because the small intestine stops producing the lactase enzyme when it is inflamed, so that leaves us with no way to digest lactose. We regain the ability to produce lactase as the inflammation is controlled. But with MC, it's not lactase that's the main problem with dairy products — it's casein, the primary protein in all dairy products. Most of us produce antibodies to casein, and this of course promotes additional inflammation.
If you're already following a paleo diet, just closing any gaps, and minimizing fiber may be sufficient to maintain remission after you wean off the Entocort. Fiber is contraindicated with MC, because it is extremely abrasive on intestinal mucosal tissue when the mucosa is already hyperinflamed. Therefore we minimize fiber until after our intestines are able to heal.
Here are links to some short articles that offer some basic information on how mast cells are associated with MC:
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
You're very welcome,
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.