hi everyone,
thanks for your responses to my last post. i had an okay day yesterday after my bad D on monday, and then last night and today it's been explosive and very watery again, after about 11 good days. I am wondering if it was yogurt, as I hadn't eaten yogurt for a while and I had some Sunday, yesterday, and today (both Greek and Yoplait, strawberry).
Anyhow I finally want to send away for Enterolab testing (Gluten Sensitivity Stool and Gene Panel Complete and the Soy test).
However, do I, well, do I have to wait until I am not in a flare? To get a sample? I know that seems like a gross question but what I just had in the bathroom would not be sample-able. I am just wondering what the "requirements" are.
I am just feeling really sad today. I feel like I'll never be healthy enough to get pregnant again. Ugh, I hate feeling this way :(
Enterolabs test...a quick question (and feeling sad)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Abbie,
Well, that's not a gross question on this board - it's a common one. Trust me, they've seen some pretty rough samples at Enterolab, over the years. If some of us had waited until we had "normal" BMs, before sending a sample, we might still be waiting.
Obviously, it's much easier to collect a sample, if a BM is not in the "explosive" category, but we have to do what we have to do. The kit will include instructions, and the container, to be used for collecting the sample. Hopefully, things might settle down a little, by the time you receive the kit. If not, you may just have to do the best you can.
I'm sorry that you're having such a setback, but it certainly does sound as though you may be producing antibodies to casein, now. D caused by dairy products is sometimes affectionately referred to as "battery acid D" on this board.
If you want to try to tone down the explosiveness, you might want to remove the casein from your diet before collecting the sample. Most of us who are casein-sensitive, respond rather promptly to removing casein from the diet - usually within a few days. The anti-casein antibodies do diminish rather quickly when casein is removed from the diet, (unlike antigiladin antibodies in response to gluten-sensitivity, which can persist in detectable numbers in the stool, for over a year after gluten is removed from the diet), but Enterolabs tests are sensitive enough that they can normally still detect casein antibodies up to a couple of weeks after casein is removed from the diet.
Please don't feel so sad. I realize that it's hard to not feel that way, but most of us have been through that same ordeal. After you get your test results back, and/or modify your diet, to cut out the rest of your intolerances, you will be amazed at how good you feel. You'll get your life back - MC just holds us hostage for a while, until we are able to fine-tune our treatment program, to eliminate all the sources of inflammation.
Tex
Well, that's not a gross question on this board - it's a common one. Trust me, they've seen some pretty rough samples at Enterolab, over the years. If some of us had waited until we had "normal" BMs, before sending a sample, we might still be waiting.
Obviously, it's much easier to collect a sample, if a BM is not in the "explosive" category, but we have to do what we have to do. The kit will include instructions, and the container, to be used for collecting the sample. Hopefully, things might settle down a little, by the time you receive the kit. If not, you may just have to do the best you can.
I'm sorry that you're having such a setback, but it certainly does sound as though you may be producing antibodies to casein, now. D caused by dairy products is sometimes affectionately referred to as "battery acid D" on this board.
If you want to try to tone down the explosiveness, you might want to remove the casein from your diet before collecting the sample. Most of us who are casein-sensitive, respond rather promptly to removing casein from the diet - usually within a few days. The anti-casein antibodies do diminish rather quickly when casein is removed from the diet, (unlike antigiladin antibodies in response to gluten-sensitivity, which can persist in detectable numbers in the stool, for over a year after gluten is removed from the diet), but Enterolabs tests are sensitive enough that they can normally still detect casein antibodies up to a couple of weeks after casein is removed from the diet.
Please don't feel so sad. I realize that it's hard to not feel that way, but most of us have been through that same ordeal. After you get your test results back, and/or modify your diet, to cut out the rest of your intolerances, you will be amazed at how good you feel. You'll get your life back - MC just holds us hostage for a while, until we are able to fine-tune our treatment program, to eliminate all the sources of inflammation.
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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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sorry to hear that you are still having explosive flares.
at first it was hard to 'give up' favourite foods, now when i see the foods in the supermarket or someone at work eating them, the memories of explosive D are still very front of mind and the craving for that food soon goes away!!!
a while ago we talked about 'the switch' when you no longer crave or want foods that you used to have pre MC. the 10 minutes of joy of eating it is not worth the discomfort and possible hours of D
good luck with the adjustment - it takes time (unfortunately....) i was diagnosed in Dec '09 and i am still figuring what foods are my friends
at first it was hard to 'give up' favourite foods, now when i see the foods in the supermarket or someone at work eating them, the memories of explosive D are still very front of mind and the craving for that food soon goes away!!!
a while ago we talked about 'the switch' when you no longer crave or want foods that you used to have pre MC. the 10 minutes of joy of eating it is not worth the discomfort and possible hours of D
good luck with the adjustment - it takes time (unfortunately....) i was diagnosed in Dec '09 and i am still figuring what foods are my friends
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
You don't need to wait for a flare, you can look at my test results on this site and see that I was still highly reactive to gluten more than 4 months after I stopped eating it.
My daughter also is GS and had two pregnancies with Hyperemesis, I don't know if there is a connection there, or if you have had that issue before. Both her kids are genius level, but the pregnancies were not fun before Month 6.
My daughter also is GS and had two pregnancies with Hyperemesis, I don't know if there is a connection there, or if you have had that issue before. Both her kids are genius level, but the pregnancies were not fun before Month 6.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Abbey
in the words of our wonderful wise one (tex...) you will get your life back and you will get control of this MC Demon
(and many other wonderful people from this family have told me this as well)
there are really crappy (pun intended!) days
and then there are the diamond days that totally sparkle.
you will get your health back, i cant promise the pregnancy thing but you will have all of us helping you emotionally and mentally.
in the words of our wonderful wise one (tex...) you will get your life back and you will get control of this MC Demon
(and many other wonderful people from this family have told me this as well)
there are really crappy (pun intended!) days
and then there are the diamond days that totally sparkle.
you will get your health back, i cant promise the pregnancy thing but you will have all of us helping you emotionally and mentally.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Dear Abbie
There are days when I have sat down a cried "why me". Thanks to the encouragement on this board very, very gradually my days have got better. Not 100% yet, but much better. It is a long road, but it does lead to "getting your life back".
All the best,
P.S. You said "Gluten" "Soy" test, but you may want to also consider including "Casein".
There are days when I have sat down a cried "why me". Thanks to the encouragement on this board very, very gradually my days have got better. Not 100% yet, but much better. It is a long road, but it does lead to "getting your life back".
All the best,
P.S. You said "Gluten" "Soy" test, but you may want to also consider including "Casein".
thank you all so much for your thoughts.
i am constantly amazed at how one "bad" BM can set my day off. i have to really try on working on that (my anxiety in general), because i have to accept that sometimes I will have bad days, and sometimes i will not. i know a large component of my issues are anxiety/IBS related as well, and when I am in a bad place, things get worse.
acupuncture has definitely helped me, so i will continue to do that as well as do the enterolab testing (including casein, thanks ant!).
i am also in the process of taking my april food diary (including BMs) and color coding it to see if I have a lot of one thing before or around some bad BMs (dairy, sugars, roughage, meat, etc.). i am going to bring it to my nutritionist too. i am trying to maintain and put on weight but it is hard when a lot of fattening things sometimes set me off (but then sometimes don't!).
if anyone has any weight-gaining tips, they would be much appreciated!!!
thanks again!
i am constantly amazed at how one "bad" BM can set my day off. i have to really try on working on that (my anxiety in general), because i have to accept that sometimes I will have bad days, and sometimes i will not. i know a large component of my issues are anxiety/IBS related as well, and when I am in a bad place, things get worse.
acupuncture has definitely helped me, so i will continue to do that as well as do the enterolab testing (including casein, thanks ant!).
i am also in the process of taking my april food diary (including BMs) and color coding it to see if I have a lot of one thing before or around some bad BMs (dairy, sugars, roughage, meat, etc.). i am going to bring it to my nutritionist too. i am trying to maintain and put on weight but it is hard when a lot of fattening things sometimes set me off (but then sometimes don't!).
if anyone has any weight-gaining tips, they would be much appreciated!!!
thanks again!
Hi Abbey,
I rarely post but am a daily reader of this wonderful forum. I too was diagnosed with MC/CC at age 31. I am now almost 36. My symptoms emerged seemingly out of nowhere about six months after the birth of my first child. The fatigue came first, then joint pains, then of course it progressed to watery D. I had several very rough years that at times were debilitating. I completely convinced myself that I didn't want anymore children mainly because I felt so bad that I could hardly care for one let alone two children while being so sick. I was on and off while I call the entocort roller coaster several times until I completely eliminated gluten. I was on entocort for several months and was in a pretty good place. No D but still dealing with fatigue and joint pain. It was a good time for me to transition to being gluten free. I think that did the trick for me as far as successfully tapering off of the entocort. I felt great pretty quickly only to deteriorate again. I eliminated casein and then soy and that, along with some alternative therapies, has been the answer for me. I strictly avoid all three. With regards to getting pregnant. I know how you feel. I cried a river of tears at the thought of not being able to carry and care for another child. Long story short, it took me quite a while until I felt well enough to conceive again. I found a great team of OB's and a perinatologist who were sympathetic to my illness. I now have a five and a half year old and an eleven month old. Both children were small for their gestational dates and the baby was induced at 35 weeks because of growth concerns. They are both healthy. My second pregnancy was rough. My MC flared bad and I was put on pentasa which worked very well. I am now med free but am so conscious about my diet. Being GF, DF, and SF is part of my lifestyle now and I think little of it. I joined an amazing local gluten intolerance support group and have met some incredible folks. I am thin, too. I struggle to maintain 115. I take every opportunity to eat healthy fats, avocados, olive oil, wild salmon....to just eat! I use a lot of coconut milk which calorie dense and contains a lot of fat and hemp milk which seems to be a bit more calorie and nutrient dense than other non dairy milks. I try to make sure I have snacks with me all the time. I lose weight quickly if I don't plan ahead. Anyhow, sorry for the long post. I know you can get through this and have a healthy pregnancy. You might discuss folate, omega 3 and Vit. D supplementation with your OB and have some comprehensive blood work done before you conceive. I can feel your sadness and understand what you are going through. Just know you are not alone and things will get better.
Sharon
I rarely post but am a daily reader of this wonderful forum. I too was diagnosed with MC/CC at age 31. I am now almost 36. My symptoms emerged seemingly out of nowhere about six months after the birth of my first child. The fatigue came first, then joint pains, then of course it progressed to watery D. I had several very rough years that at times were debilitating. I completely convinced myself that I didn't want anymore children mainly because I felt so bad that I could hardly care for one let alone two children while being so sick. I was on and off while I call the entocort roller coaster several times until I completely eliminated gluten. I was on entocort for several months and was in a pretty good place. No D but still dealing with fatigue and joint pain. It was a good time for me to transition to being gluten free. I think that did the trick for me as far as successfully tapering off of the entocort. I felt great pretty quickly only to deteriorate again. I eliminated casein and then soy and that, along with some alternative therapies, has been the answer for me. I strictly avoid all three. With regards to getting pregnant. I know how you feel. I cried a river of tears at the thought of not being able to carry and care for another child. Long story short, it took me quite a while until I felt well enough to conceive again. I found a great team of OB's and a perinatologist who were sympathetic to my illness. I now have a five and a half year old and an eleven month old. Both children were small for their gestational dates and the baby was induced at 35 weeks because of growth concerns. They are both healthy. My second pregnancy was rough. My MC flared bad and I was put on pentasa which worked very well. I am now med free but am so conscious about my diet. Being GF, DF, and SF is part of my lifestyle now and I think little of it. I joined an amazing local gluten intolerance support group and have met some incredible folks. I am thin, too. I struggle to maintain 115. I take every opportunity to eat healthy fats, avocados, olive oil, wild salmon....to just eat! I use a lot of coconut milk which calorie dense and contains a lot of fat and hemp milk which seems to be a bit more calorie and nutrient dense than other non dairy milks. I try to make sure I have snacks with me all the time. I lose weight quickly if I don't plan ahead. Anyhow, sorry for the long post. I know you can get through this and have a healthy pregnancy. You might discuss folate, omega 3 and Vit. D supplementation with your OB and have some comprehensive blood work done before you conceive. I can feel your sadness and understand what you are going through. Just know you are not alone and things will get better.
Sharon
Sharon
Sharon,
Thank you very, very much for your informative and supportive post. Even though we try to promote the type of treatment plan that you followed, (removing gluten, dairy, and soy from the diet, while using Entocort to help control the symptoms during the initial healing period), IMO, a testimonial such as yours is worth so much more, to new readers here, who don't know, (and wonder if they should trust), any of us, and what we are posting.
You will never know how many people you have helped, all over the world, by posting your experience, and all those excellent diet suggestions, and food and supplement recommendations.
Thank you so much, for taking the time to post that information.
Tex
Thank you very, very much for your informative and supportive post. Even though we try to promote the type of treatment plan that you followed, (removing gluten, dairy, and soy from the diet, while using Entocort to help control the symptoms during the initial healing period), IMO, a testimonial such as yours is worth so much more, to new readers here, who don't know, (and wonder if they should trust), any of us, and what we are posting.
You will never know how many people you have helped, all over the world, by posting your experience, and all those excellent diet suggestions, and food and supplement recommendations.
Thank you so much, for taking the time to post that information.
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.
thanks so much, everyone, and especially sharon for sharing and for responding. it's all encouraging. overwhelming but encouraging.
i am "fortunate" in that physically i feel really great most of the time - my list of maladies pretty much went away when I went GF last July -- no more exhaustion, no more moodiness, no more sinus infections, no more headaches, less sick in general, etc. It's just the D that strikes now and again (and after my miscarriage in January, a bit more "now," I think due to stress). I got pregnant fairly easily and so I am hoping that I can get my flares under better control so I can conceive easily again.
My OBGYN knew about my colitis and didn't seem terribly alarmed (i.e. had dealt with it and worse before), and told me that I would have weekly ultrasounds starting at 26 weeks to monitor the size of the baby, and then if there wasn't enough growth, I suppose some other methods would be utilized, or perhaps as Sharon said, early inducement. I had normal extensive blood panels too, and I was on Omega-3 after about 6 weeks, and PNVs for the past year just about. Unfortunately I lost that baby but now that I am seeing a GI specialist, I am a bit more confident in getting pregnant again. It's just scary to think that I might have been the reason for this miscarriage, even though I know statistically it was likely just a chromosomal issue and that going to the bathroom 3-4 times a day will likely not cause a miscarriage (I fortunately wasn't having morning sickness, just D).
thanks again for sharing. i appreciate it tremendously.
i am "fortunate" in that physically i feel really great most of the time - my list of maladies pretty much went away when I went GF last July -- no more exhaustion, no more moodiness, no more sinus infections, no more headaches, less sick in general, etc. It's just the D that strikes now and again (and after my miscarriage in January, a bit more "now," I think due to stress). I got pregnant fairly easily and so I am hoping that I can get my flares under better control so I can conceive easily again.
My OBGYN knew about my colitis and didn't seem terribly alarmed (i.e. had dealt with it and worse before), and told me that I would have weekly ultrasounds starting at 26 weeks to monitor the size of the baby, and then if there wasn't enough growth, I suppose some other methods would be utilized, or perhaps as Sharon said, early inducement. I had normal extensive blood panels too, and I was on Omega-3 after about 6 weeks, and PNVs for the past year just about. Unfortunately I lost that baby but now that I am seeing a GI specialist, I am a bit more confident in getting pregnant again. It's just scary to think that I might have been the reason for this miscarriage, even though I know statistically it was likely just a chromosomal issue and that going to the bathroom 3-4 times a day will likely not cause a miscarriage (I fortunately wasn't having morning sickness, just D).
thanks again for sharing. i appreciate it tremendously.
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wonderwoman
- Rockhopper Penguin
- Posts: 574
- Joined: Wed Feb 17, 2010 8:59 pm
- Location: Sun City, AZ
When I read posts like Abby's and Sharon's I get all choked up. I feel so fortunate that I have not had to go through what some people here go through. However, had I not found this site immediately after being diagnosed, I don't know where I would be today. Hang in there girls.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore