Hi, I'm new! I'm a 31 yearold mother of 3. After 18 mos of testing for a carcinoid tumor they finally said it's just MC- both types. Apparently my body was so off with the diarrhea (lost 20 lbs in 8 mos) that my 5HIAA was really high......Sandostatin although painful got the diarrhea under control. All is well and I look
So what's the deal with shrimp? Does anyone else have "issues" with shrimp?
Any women out there notice a HUGE relationship between menstrual cycle and increased diarrhea?
OOh I'm so excited to talk to "my kind" of people- by the way I love the group name! Are there shirts to buy! :)
shrimp?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Momma and 
So glad you found us! I can't remember anyone mentioning any problems with shrimp. As you can see by the list of food intolerances I have (under my photo to the left) I have MANY triggers and yet I seem tolerate seafood well. The most common intolerances of MCers seem to be gluten first, then dairy, and then others like corn, soy, eggs. But others will be along soon to share their experience too. Are you having trouble with shrimp?
You will LOVE this group (family really). Everyone is so helpful with info, support, and sharing their experience. What a wealth of knowledge we have here! And we like to laugh and have fun too. As you will see, it IS possible to gain control of this disease.
Yep, some women have mentioned an increase in D (diarrhea) during their periods.
Great idea about "Potty People" shirts! Hey, Wayne, Peg, anyone.....what do you think? Could we have some made up if enough folks were interested? Quite a few of us have gotten together in various parts of the country to meet each other - Oregon, N.Y., Michigan. And Sally in Oregon has offered to host another gathering in Oregon next summer. Maybe we could all wear our shirts?
Looking forward to further chats!
Love,
Polly
So glad you found us! I can't remember anyone mentioning any problems with shrimp. As you can see by the list of food intolerances I have (under my photo to the left) I have MANY triggers and yet I seem tolerate seafood well. The most common intolerances of MCers seem to be gluten first, then dairy, and then others like corn, soy, eggs. But others will be along soon to share their experience too. Are you having trouble with shrimp?
You will LOVE this group (family really). Everyone is so helpful with info, support, and sharing their experience. What a wealth of knowledge we have here! And we like to laugh and have fun too. As you will see, it IS possible to gain control of this disease.
Yep, some women have mentioned an increase in D (diarrhea) during their periods.
Great idea about "Potty People" shirts! Hey, Wayne, Peg, anyone.....what do you think? Could we have some made up if enough folks were interested? Quite a few of us have gotten together in various parts of the country to meet each other - Oregon, N.Y., Michigan. And Sally in Oregon has offered to host another gathering in Oregon next summer. Maybe we could all wear our shirts?
Looking forward to further chats!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi AerobicsMomma,
Welcome to our online family. Don't feel like the Lone Ranger. I was diagnosed with colon cancer, first by my GP, and then by the GI doc he sent me to, ( I had uncontrollable diarrhea). After running me through every test they had, and failing to find any cancer, (and also failing to take biopsies during a colonoscopy), the GI finally decided there was nothing wrong with me, but suggested that surgical removal of the lower half of my colon, might stop the diarrhea. I never went back to him, of course, and finally resolved my symptoms by modifying my diet.
I believe you are the first here to be treated for MC with Sandostatin. Are all your MC symptoms under control?
Again, welcome aboard.
Tex
P S Polly, sure, we can have shirts and/or virtually anything else made with our logo. I've given some thought to that before, but never mentioned it, since I wasn't sure whether anyone would want to display that logo. LOL.
Welcome to our online family. Don't feel like the Lone Ranger. I was diagnosed with colon cancer, first by my GP, and then by the GI doc he sent me to, ( I had uncontrollable diarrhea). After running me through every test they had, and failing to find any cancer, (and also failing to take biopsies during a colonoscopy), the GI finally decided there was nothing wrong with me, but suggested that surgical removal of the lower half of my colon, might stop the diarrhea. I never went back to him, of course, and finally resolved my symptoms by modifying my diet.
I believe you are the first here to be treated for MC with Sandostatin. Are all your MC symptoms under control?
Again, welcome aboard.
Tex
P S Polly, sure, we can have shirts and/or virtually anything else made with our logo. I've given some thought to that before, but never mentioned it, since I wasn't sure whether anyone would want to display that logo. LOL.
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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AerobicsMomma
- Posts: 11
- Joined: Wed Sep 20, 2006 4:45 pm
new kid!
Wow,
The Sandostatin was a "just in case" for the Carcinoid- but apparently is used frequently for chemo. patients who suffer w/ diarrhea problems. I was told by my very wonderful Hem.Onc that I may need to use it again if I go down as bad as I did. Hopefully it was a one time gig. I have eliminated dairy TOTALLY and Wow I have a life! I used to eat egg whites w/ 1/2 a bagel and BUTTER! I never knew that little dab of butter was making my life miserable. The diet I had been on (Carcinoid potential) had me off a lot of foods, so I was so happy to add somethings back and trade the dairy. It's fine now. I know that I am blessed to be young and have a diagnosis- I'm not going to self destruct by eating things that hurt! The Asacol- well it floats! I'm not certain it helps but it's not hurting me either! Tums Smoothies, LOVE THEM and tylenol is a big help. GI said no more ibuprofen based products. I try not to take too much Immodium or Limodil- I just note what I ate and try it again to see if ws really the culprit and move forward. It's the middle of the night runs I hate- and the early morning clean out.
It's odd I read about the gluten stuff- I am so glad that hasn't been an issue. Infact when this all started the only things I could eat were pasta and potatoes no skin. Spinach is one of the only greens I can eat and this recall is killing me!
I think I have discovered that it's the fat in shrimp- salmon gets me too!
It cracks me up the logo- the free discussion of liquid bowel movements- what a group! My Mom giggles at the fact I travel with my favorite toilet paper- it's gotta be soft!
So is the gluten thing acquired or maybe am I safe? I've read a bit about chronic fatigue, are these things to look forward to, or can I go kicking a screaming towards them?!! I teach 6-10 aerobics/yoga classes a week. And there was a time I thought I'd have to quit I was so weak- but I never did and I swear the yoga has saved my sanity. I have to say I got the weight loss controlled- found foods to eat and I look the best I ever have.
I'm so glad I have a place to vent and ask questions! Thanks to the person that started this gaggle of Potty People!
The Sandostatin was a "just in case" for the Carcinoid- but apparently is used frequently for chemo. patients who suffer w/ diarrhea problems. I was told by my very wonderful Hem.Onc that I may need to use it again if I go down as bad as I did. Hopefully it was a one time gig. I have eliminated dairy TOTALLY and Wow I have a life! I used to eat egg whites w/ 1/2 a bagel and BUTTER! I never knew that little dab of butter was making my life miserable. The diet I had been on (Carcinoid potential) had me off a lot of foods, so I was so happy to add somethings back and trade the dairy. It's fine now. I know that I am blessed to be young and have a diagnosis- I'm not going to self destruct by eating things that hurt! The Asacol- well it floats! I'm not certain it helps but it's not hurting me either! Tums Smoothies, LOVE THEM and tylenol is a big help. GI said no more ibuprofen based products. I try not to take too much Immodium or Limodil- I just note what I ate and try it again to see if ws really the culprit and move forward. It's the middle of the night runs I hate- and the early morning clean out.
It's odd I read about the gluten stuff- I am so glad that hasn't been an issue. Infact when this all started the only things I could eat were pasta and potatoes no skin. Spinach is one of the only greens I can eat and this recall is killing me!
I think I have discovered that it's the fat in shrimp- salmon gets me too!
It cracks me up the logo- the free discussion of liquid bowel movements- what a group! My Mom giggles at the fact I travel with my favorite toilet paper- it's gotta be soft!
So is the gluten thing acquired or maybe am I safe? I've read a bit about chronic fatigue, are these things to look forward to, or can I go kicking a screaming towards them?!! I teach 6-10 aerobics/yoga classes a week. And there was a time I thought I'd have to quit I was so weak- but I never did and I swear the yoga has saved my sanity. I have to say I got the weight loss controlled- found foods to eat and I look the best I ever have.
I'm so glad I have a place to vent and ask questions! Thanks to the person that started this gaggle of Potty People!
Hi there!
I'm just curious. How soon after you ingest the foods you suspect, do you notice a reaction with diarrhea?
Happy to make your acquaintence, by the way.
As far as the tees are concerned, it will have to be a VERY LARGE Potty People gathering for me to wear mine out anywhere -- you know, safety in numbers.
Yours, Luce
I'm just curious. How soon after you ingest the foods you suspect, do you notice a reaction with diarrhea?
Happy to make your acquaintence, by the way.
As far as the tees are concerned, it will have to be a VERY LARGE Potty People gathering for me to wear mine out anywhere -- you know, safety in numbers.
Yours, Luce
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Hi!
You sound like you are well on your way to recovery. And since you have already realized that diet helps some, I'd suggest trying full out diet elmination to narrow down your triggers. Jean has an elimination diet that she found gets things calmed down and then you can add things like eggs, or gluten or whatever one at a time so you can figure out if you react.
I don't want to sound discouraging about the gluten, but that seems to be the common thread among those of us with a known intolerance. But what is weird about it is that some (like myself) don't get the big D from it. And in fact when I was suffering the daily D, I had been hooked on chicken kabob salads from a local sub/pizza shop, but when I developed MC, the lettuce did not agree with me and I switched to Whoppers at Burger King (yeah, great, right?). And they settled better.
Well, its quite a long story, but after diagnosis and finding this group, I decided to try a gluten free diet for preventative purposes. I was pleasantly surprised to find that the increasing aches and pains I was having were related to the gluten! I have a very hard time sticking to the diet, probably because it takes several days of gluten ingestion for me to really react. But I do feel more energetic, more focused, and stuff when I stick to it.
Poke around the site. Come over to the General Message Board to chat about anything...MC, hobbies, life, family. This group is very supportive about all aspects of our lives as it is all related to a person's wellbeing.
Katy
You sound like you are well on your way to recovery. And since you have already realized that diet helps some, I'd suggest trying full out diet elmination to narrow down your triggers. Jean has an elimination diet that she found gets things calmed down and then you can add things like eggs, or gluten or whatever one at a time so you can figure out if you react.
I don't want to sound discouraging about the gluten, but that seems to be the common thread among those of us with a known intolerance. But what is weird about it is that some (like myself) don't get the big D from it. And in fact when I was suffering the daily D, I had been hooked on chicken kabob salads from a local sub/pizza shop, but when I developed MC, the lettuce did not agree with me and I switched to Whoppers at Burger King (yeah, great, right?). And they settled better.
Well, its quite a long story, but after diagnosis and finding this group, I decided to try a gluten free diet for preventative purposes. I was pleasantly surprised to find that the increasing aches and pains I was having were related to the gluten! I have a very hard time sticking to the diet, probably because it takes several days of gluten ingestion for me to really react. But I do feel more energetic, more focused, and stuff when I stick to it.
Poke around the site. Come over to the General Message Board to chat about anything...MC, hobbies, life, family. This group is very supportive about all aspects of our lives as it is all related to a person's wellbeing.
Katy
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artteacher
- Rockhopper Penguin
- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
.
Hi there, it's nice to meet you, and "welcome"!
Shrimp and salmon (all frozen seafood) has large amounts of sulfite, as a preservative and color protector, added. It may or may not be listed on the package, because it's allowed in a certain amount of parts per million. (Besides that, sulfur is a "natural" product, so it may be in foods that say on the label "All Natural")
Do you have problems with other foods that have large amounts of sulfites? Those would be shredded coconut, marachino cherries, wine, gelatin, corn starch or other corn products, sulfa drugs/antibiotics, instant potatoes, some frozen potato products, lemon juice or mixed drink bases such as margerita mix.
Anyway, just a thought. Again, welcome. I bet you have tons of interesting experiences and knowledge to share.
Marsha
Shrimp and salmon (all frozen seafood) has large amounts of sulfite, as a preservative and color protector, added. It may or may not be listed on the package, because it's allowed in a certain amount of parts per million. (Besides that, sulfur is a "natural" product, so it may be in foods that say on the label "All Natural")
Do you have problems with other foods that have large amounts of sulfites? Those would be shredded coconut, marachino cherries, wine, gelatin, corn starch or other corn products, sulfa drugs/antibiotics, instant potatoes, some frozen potato products, lemon juice or mixed drink bases such as margerita mix.
Anyway, just a thought. Again, welcome. I bet you have tons of interesting experiences and knowledge to share.
Marsha
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Hi Momma,
Welcome to the group! Glad you found us.
As mentioned, it's important to look at the sulfite and preservitive levels in all seafoods that you are buying. I have had no problems with shrimp, crab, fish because I buy it fresh, no additives of any kind before it hits my plate. I do have reactions to additives.
Love,
Joanna
Welcome to the group! Glad you found us.
As mentioned, it's important to look at the sulfite and preservitive levels in all seafoods that you are buying. I have had no problems with shrimp, crab, fish because I buy it fresh, no additives of any kind before it hits my plate. I do have reactions to additives.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Oh and for those interested in how those two lead to SIBO, here are some related articles from pubmed. The 3) items are related to slow gut motility the 4) item is related to things that lower acidity. Oh and I believe that SIBO is part of the how we get Microscopic Colitis.
3a) Study of bacterial translocation from gut after paraplegia caused by spinal cord injury in rats.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3b) Small intestinal motility disturbances and bacterial overgrowth in patients with liver cirrhosis and portal hypertension.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3c) Patients with chronic renal failure have abnormal small intestinal motility and a high prevalence of small intestinal bacterial overgrowth.
http://www.ncbi.nlm.nih.gov/entrez/quer ... s=12853724
3d) Small-bowel bacterial overgrowth in diabetic subjects is associated with cardiovascular autonomic neuropathy.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
Chronic diarrhoea and diabetes mellitus: prevalence of small intestinal bacterial overgrowth.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3e) Gluten sensitivity as a neurological illness
http://jnnp.bmjjournals.com/cgi/content ... f_ipsecsha
4) Suppression of gastric acid secretion in patients with gastroesophageal reflux disease results in gastric bacterial overgrowth and deconjugation of bile acids.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3a) Study of bacterial translocation from gut after paraplegia caused by spinal cord injury in rats.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3b) Small intestinal motility disturbances and bacterial overgrowth in patients with liver cirrhosis and portal hypertension.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3c) Patients with chronic renal failure have abnormal small intestinal motility and a high prevalence of small intestinal bacterial overgrowth.
http://www.ncbi.nlm.nih.gov/entrez/quer ... s=12853724
3d) Small-bowel bacterial overgrowth in diabetic subjects is associated with cardiovascular autonomic neuropathy.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
Chronic diarrhoea and diabetes mellitus: prevalence of small intestinal bacterial overgrowth.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
3e) Gluten sensitivity as a neurological illness
http://jnnp.bmjjournals.com/cgi/content ... f_ipsecsha
4) Suppression of gastric acid secretion in patients with gastroesophageal reflux disease results in gastric bacterial overgrowth and deconjugation of bile acids.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_DocSum
Hello Momma, so pleased things are improving for you, me too, I have been taking Asacoll now for 6 weeks, some improvement, not perfect, Im thinking of trying to eliminate things that trigger my runs, I know for sure that if I overload my tum, it will start me running, if I know I cant find a loo, I seem to panic and that triggers it off.
I suffered this in silence for donkeys years, I feel like I have come out, so to speak.
Im glad I found this site, Im a relatavely new member and I live in hope of a normal and fit life.
Kindest regards
Janet
I suffered this in silence for donkeys years, I feel like I have come out, so to speak.
Im glad I found this site, Im a relatavely new member and I live in hope of a normal and fit life.
Kindest regards
Janet
jmg