I just got out of the hospital on Saturday for what was initially thought to be appendicitis. Thankfully, it was not, but four days in the hospital was not fun. It also revealed that I am pregnant! It was unexpected, and pretty highly unlikely ( I have been on continuous BC for over 5 years, and have endometriosis.) Needless to say, my husband and I were pretty surprised by the news!
The assumption is that my body went into over drive with the mass hormonal changes while I was already in a relapse.
Unfortunately, we have been plagued by the unfortunate experience of an ectopic pregnancy that resulted in a rupture and emergency surgery about 6 years ago. Also an unplanned pregnancy, it was still a devastating loss, and terrifying experience.
Due to my being in the middle of a relapse, I have also been experiencing those all too familiar bowel cramps that come along with our 'gift' of a disease! With my history, you can imagine how scary this makes each day for me. I am constantly worrying that the cramping is related to the pregnancy (still very early ~4-5 weeks), and that I am going to be destined to go through the same thing as before.
Has anyone experienced being pregnant during a relapse? How did you handle the stress of the constant worry?
How would anyone suggest I get my relapse under control? I am strictly adherent to my Enterolab results, and do not consume, or use products with any Gluten, Soy, Oats or Rice.
Thanks for any and all help.
Pregnancy and Relapses?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hey everyone!
It's been awhile since I was on, so I thought I would add an update.
Our daughter is now 6 months old. She was born July 1st (4 weeks early) and was growth restricted. I had a full placental abruption, so we are both Very lucky to be alive!
Things went Really Well with my CC during pregnancy. I even 'treated' myself to bites of things with gluten here and there.
About a month ago, I under went a hysterectomy (due to other issues.) Turns out that was a really good call. My uterus was covered in blood clots. They still don't know why (except that I had endometriosis for years before.)
So guess what?? I am about 5 weeks post surgery, have been following my gluten, soy, oats and rice free diet, and- RELAPSE!
I am thinking it is time to call the GI and have a visit.
I have been up all night (even when taking sleeping meds) for the last week, going and going. Same symptoms as before of ingesting food, and 20-40 minutes later having to RUN to the bathroom. It was one thing to be doing this a year and a half ago, but I have a 6 month old, and need to be able to function!!
The diet I am on is because of having the..poop test. My results were both super sensitive for gluten and soy, and lower for oats and rice.
Everything else was FINE- dairy and all! I have a friend who did a food sensitivity blood test. I know it is expensive. Has anyone else had this? Were the results helpful? Worth it?
I do not want to be in another situation where I am hospitalized due to dehydration for having movements 15+ times / day for 9 weeks :(
I guess the pregnancy bliss is over- huh?
It's been awhile since I was on, so I thought I would add an update.
Our daughter is now 6 months old. She was born July 1st (4 weeks early) and was growth restricted. I had a full placental abruption, so we are both Very lucky to be alive!
Things went Really Well with my CC during pregnancy. I even 'treated' myself to bites of things with gluten here and there.
About a month ago, I under went a hysterectomy (due to other issues.) Turns out that was a really good call. My uterus was covered in blood clots. They still don't know why (except that I had endometriosis for years before.)
So guess what?? I am about 5 weeks post surgery, have been following my gluten, soy, oats and rice free diet, and- RELAPSE!
I am thinking it is time to call the GI and have a visit.
I have been up all night (even when taking sleeping meds) for the last week, going and going. Same symptoms as before of ingesting food, and 20-40 minutes later having to RUN to the bathroom. It was one thing to be doing this a year and a half ago, but I have a 6 month old, and need to be able to function!!
The diet I am on is because of having the..poop test. My results were both super sensitive for gluten and soy, and lower for oats and rice.
Everything else was FINE- dairy and all! I have a friend who did a food sensitivity blood test. I know it is expensive. Has anyone else had this? Were the results helpful? Worth it?
I do not want to be in another situation where I am hospitalized due to dehydration for having movements 15+ times / day for 9 weeks :(
I guess the pregnancy bliss is over- huh?
Even thought you tested Ok for dairy, when we are in a flare, we don't produce enough of the enzymes needed to properly digest it, so for now, you should not eat it. Also, if you are consuming Raw frits and veggies, you might want to stop that for now also. Fiber and sugars are very irritating on an inflamed gut.
Congratulations on having a beautiful daughter! I have two and they are the loves of my life :)
Leah
Congratulations on having a beautiful daughter! I have two and they are the loves of my life :)
Leah
Congrats on the new baby!!
Unfortunately, lots of autoimmune issues have a tendency to flare during the postpartum period, not to mention after the stress of a hysterectomy! If you're going that much, you may want to start meds, or a much more restrictive diet. I had great luck stopping all my symptoms on the Autoimmune Paleo Protocol diet, which is an elimination diet. It's no grains, no dairy, no legumes, no nuts, no eggs, no nightshades, and no seeds. You can do it for 30-60 days to see if you improve, then slowly start adding foods one at a time. I've reintroduced rice, potato starch, mild nightshade spices, and several seeds so far. I eat lots of meat, squashes, soups, cooked veggies, and (once the D stopped) salads.
Unfortunately, lots of autoimmune issues have a tendency to flare during the postpartum period, not to mention after the stress of a hysterectomy! If you're going that much, you may want to start meds, or a much more restrictive diet. I had great luck stopping all my symptoms on the Autoimmune Paleo Protocol diet, which is an elimination diet. It's no grains, no dairy, no legumes, no nuts, no eggs, no nightshades, and no seeds. You can do it for 30-60 days to see if you improve, then slowly start adding foods one at a time. I've reintroduced rice, potato starch, mild nightshade spices, and several seeds so far. I eat lots of meat, squashes, soups, cooked veggies, and (once the D stopped) salads.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Hi,
Sorry to hear about the relapse. I agree with Leah. Dairy may be at least part of your problem. And I agree with Zizzle's suggestions, also.
Your description of your reactions (D within 20–40 minutes of eating) suggests that you are having inappropriate mast cell reactions (histamine-based, or IgE-based reactions), probably associated with mast cell activation disorder (MCAD). It's very common with MC. Normal digestive system reactions to food sensitivities (IgA-based reactions), typically don't begin until several hours after eating.
The easiest way to rule out mast cell issues is to start taking an antihistamine each day (or 1 in the morning, and another at bedtime), while avoiding foods that are high in histamine content, and foods that cause mast cells to degranulate (release histamine). If histamine is your problem, then you should see some improvement within a day or 2 after trying these remedies. Here are lists of some foods in those categories, and a link to the source:
Note that fermented dairy products are high in histamine content, and milk promotes mast cell degranulation, so these products can affect us in at least 2 different ways — by causing us to produce antibodies, and by prompting a mast cell reaction.
It's also possible that your diet may be cross-contaminated by gluten or soy. Those foods are extremely difficult to avoid, if you use any processed foods, or eat out (any food that you did not prepare yourself), because many processed foods contain trace amounts of gluten and/or soy, and most restaurant personnel do not fully understand the challenges that must be managed in order to serve food that is truly free of gluten, soy, etc.
Good luck with tracking down the problem, and please keep us posted.
Tex
Sorry to hear about the relapse. I agree with Leah. Dairy may be at least part of your problem. And I agree with Zizzle's suggestions, also.
Your description of your reactions (D within 20–40 minutes of eating) suggests that you are having inappropriate mast cell reactions (histamine-based, or IgE-based reactions), probably associated with mast cell activation disorder (MCAD). It's very common with MC. Normal digestive system reactions to food sensitivities (IgA-based reactions), typically don't begin until several hours after eating.
The easiest way to rule out mast cell issues is to start taking an antihistamine each day (or 1 in the morning, and another at bedtime), while avoiding foods that are high in histamine content, and foods that cause mast cells to degranulate (release histamine). If histamine is your problem, then you should see some improvement within a day or 2 after trying these remedies. Here are lists of some foods in those categories, and a link to the source:
http://www.michiganallergy.com/food_and_histamine.shtmlHistamine-Rich Foods (including fermented foods):
Alcoholic beverages, especially beer and wine.
Anchovies
Avocados
Cheeses, especially aged or fermented cheese, such as parmesan, blue and Roquefort.
Cider and home-made root beer.
Dried fruits such as apricots, dates, prunes, figs and raisins (you may be able to eat these fruits - without reaction - if the fruit is thoroughly washed).
Eggplant
Fermented foods, such as pickled or smoked meats, sauerkraut, etc.
Mackerel
Mushrooms
Processed meats - sausage, hot dogs, salami, etc.
Sardines
Smoked fish - herring, sardines, etc.
Sour cream, sour milk, buttermilk, yogurt - especially if not fresh.
Soured breads, such as pumpernickel, coffee cakes and other foods made with large amounts of yeast.
Spinach, tomatoes
Vinegar or vinegar-containing foods, such as mayonnaise, salad dressing, ketchup, chili sauce, pickles, pickled beets, relishes, olives.
Yogurt
Histamine-Releasing Foods:
Alcohol
Bananas
Chocolate
Eggs
Fish
Milk
Papayas
Pineapple
Shellfish
Strawberries
Tomatoes
Note that fermented dairy products are high in histamine content, and milk promotes mast cell degranulation, so these products can affect us in at least 2 different ways — by causing us to produce antibodies, and by prompting a mast cell reaction.
It's also possible that your diet may be cross-contaminated by gluten or soy. Those foods are extremely difficult to avoid, if you use any processed foods, or eat out (any food that you did not prepare yourself), because many processed foods contain trace amounts of gluten and/or soy, and most restaurant personnel do not fully understand the challenges that must be managed in order to serve food that is truly free of gluten, soy, etc.
Good luck with tracking down the problem, and please keep us posted.
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.