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Hello All!
This forum is a God-send! I'm 28 years old and had no health problems other than seasonal athsma. Two months ago I developed very strange symptoms one day about 15 mins after eating a big meal. My heart started racing, I felt head pressure and dizziness and eventually ended up fainting for a short period of time. A bit later, I had about 8 solid stool bm's., around every 30-45 mins. Almost every time i've eaten since I've had these syptoms at varying degrees. (All but actuallly fainting again) I had a Colonoscopy with a biopsy and was diagnosed with CC. I was given a prescription for Budesonide, three pills for one month and then taper the following month. I'm about a week into treatment.
Something that seems strange to me it that my stools, though MUCH more frequent than normal are always solid. In reading about CC, it seems that watery diarrhea and CC go hand in hand. Am I just abnormal? Also, of course my GI said that at least we have an explanation for the frequent bm's but CC doesn't explain my other symptoms. Is it possible that something else completely different is going on? (Though I've read on this forum that most GI's don't relate CC with diet) After reading so many informative posts here, i've gone gluten and dairy free and even though I still have my strange symptoms they seem to be getting a bit better.
Whew! Sorry for being so longwinded but it's so great to find a place to finally talk about this diagnosis that so few people have even heard of. I would greatly appreciate any insight or affirmation about my symptoms and also any supplements that might be beneficial.
Thanks a ton!
Newbie here!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our internet family. While diarrhea (D) is most common with CC, a few patients actually have constipation (C) as their primary gastrointestinal symptom, and a few have normal bowel movements (BMs). And some of us (including me) alternate between D and C when we're reacting.
Your pattern of post-prandial tachicardia (significantly increased heart rate following a meal) is obviously rather unique, and I'm guessing that your doctors don't have the foggiest idea how to explain that phenomenon. Here is why that happens:
It's normal for the heart rate to increase following a meal, but in most humans the increase is normally not sufficient to be noticeable (unless anaphylactic symptoms develop, due to a food allergy). Research shows that this heart rate increase is triggered by the attachment of histamine to the H2 receptors in the stomach. The primary function of histamine in the stomach is to attach to H2 receptors in the parietal cells, in order to promote the production of gastric acid, in preparation for digesting the meal that is being ingested. IOW, the increase in the heart rate is a secondary function of histamine, following its attachment to H2 receptors in the stomach.
In your case, the effect is so pronounced (exaggerated) that the result is tachicardia. The histamine also causes vasodilatation, and this expansion of the blood vessels in your brain is the reason why you felt increased cranial pressure during the episode. The histamine is also almost surely the cause of the multiple BMs following a meal.
This is strictly my unprofessional opinion (I'm not a medical professional), so I can't diagnose you or offer medical advice. However, I can tell you that if I were in that situation, I would try taking an H2 antihistamine prior to the meal, in order to reduce the effectiveness of the histamine. H2 type antihistamines include Zantac, Tagamet, Pepcid, and Axid.
I would also guess that based on your synptoms, you may have mastocytic enterocolitis (in addition to CC). A pathologist can confirm this or rule it out by re-examining your biopsy slides under a microscope, after staining them with a trypsin-based stain, in order to make mast cells more visible.
Be very careful with the budesonide, because in the absence of diarrhea, it tends to cause constipation. If C develops, it's necessary to reduce the dosage of budesonide, in order to prevent C from becoming a serious problem.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. While diarrhea (D) is most common with CC, a few patients actually have constipation (C) as their primary gastrointestinal symptom, and a few have normal bowel movements (BMs). And some of us (including me) alternate between D and C when we're reacting.
Your pattern of post-prandial tachicardia (significantly increased heart rate following a meal) is obviously rather unique, and I'm guessing that your doctors don't have the foggiest idea how to explain that phenomenon. Here is why that happens:
It's normal for the heart rate to increase following a meal, but in most humans the increase is normally not sufficient to be noticeable (unless anaphylactic symptoms develop, due to a food allergy). Research shows that this heart rate increase is triggered by the attachment of histamine to the H2 receptors in the stomach. The primary function of histamine in the stomach is to attach to H2 receptors in the parietal cells, in order to promote the production of gastric acid, in preparation for digesting the meal that is being ingested. IOW, the increase in the heart rate is a secondary function of histamine, following its attachment to H2 receptors in the stomach.
In your case, the effect is so pronounced (exaggerated) that the result is tachicardia. The histamine also causes vasodilatation, and this expansion of the blood vessels in your brain is the reason why you felt increased cranial pressure during the episode. The histamine is also almost surely the cause of the multiple BMs following a meal.
This is strictly my unprofessional opinion (I'm not a medical professional), so I can't diagnose you or offer medical advice. However, I can tell you that if I were in that situation, I would try taking an H2 antihistamine prior to the meal, in order to reduce the effectiveness of the histamine. H2 type antihistamines include Zantac, Tagamet, Pepcid, and Axid.
I would also guess that based on your synptoms, you may have mastocytic enterocolitis (in addition to CC). A pathologist can confirm this or rule it out by re-examining your biopsy slides under a microscope, after staining them with a trypsin-based stain, in order to make mast cells more visible.
Be very careful with the budesonide, because in the absence of diarrhea, it tends to cause constipation. If C develops, it's necessary to reduce the dosage of budesonide, in order to prevent C from becoming a serious problem.
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.
Thank you so much for your informative reply Tex!
I have learned so much more from that post than my last 10 doc visits combined. I will look into the mastocytic enterocolitis asap. It's a shame my doctors don't know more this disease.
Also, one thing i forgot to mention in my previous post is that drinking regular water makes me very thirsty. I've gone to the ER and been severely dehydrated after days of drinking tons of water. Now, I mostly drink coconut water and it keeps me well hydrated (though my wallet hates it). Is not being able to drink water common?
Thanks!
Elisha
I have learned so much more from that post than my last 10 doc visits combined. I will look into the mastocytic enterocolitis asap. It's a shame my doctors don't know more this disease.
Also, one thing i forgot to mention in my previous post is that drinking regular water makes me very thirsty. I've gone to the ER and been severely dehydrated after days of drinking tons of water. Now, I mostly drink coconut water and it keeps me well hydrated (though my wallet hates it). Is not being able to drink water common?
Thanks!
Elisha
Hi Elisha,
The problem is not that drinking water makes the dehydration problem worse — it doesn't. Drinking water is essential for preventing serious dehydration problems. The problem is that while most nutrients (and electrolytes) are absorbed in the small intestine, the colon absorbs and recycles water and electrolytes that failed to be absorbed in the small intestine. But it can't do that when MC is active.
When MC is active, electrolytes are typically not well-absorbed in the small intestine, and this is actually the originating cause of D, with MC (or any other D-dominant GI issues). Sodium in particular remains unabsorbed, and excess sodium in the lumen (the interior of the intestines) triggers D. When this excess of unabsorbed electrolytes lands in the colon, it triggers even worse D, because it prompts the colon to secrete water and electrolytes into the lumen (rather than to remove and recycle them), and this causes the watery D that is typical of most cases of MC.
I realize that this is not exactly what is happening in your case, because you are not having watery D, but the multiple BMs and your dehydration issues are a clear sign that your electrolytes are being malabsorbed. My point out of all this explanation is to illustrate why we need to drink not only water, but we need to replace lost electrolytes, as well, because they are not being recycled, as they normally would be.
Some members have used Pedialyte to help replenish electrolytes, and some use Gatorade (though Gatorade is loaded with sugar, which is not good when we are reacting). There is also a recipe for formulating our own electrolyte supplement in this article about Dehydration and Electrolyte Imbalance. FYI, the author of that article is a practicing MD (she's a pediatrician), who has MC and who is in remission by diet changes (and occasional use of antihistamines) alone.
You're very welcome,
Tex
The problem is not that drinking water makes the dehydration problem worse — it doesn't. Drinking water is essential for preventing serious dehydration problems. The problem is that while most nutrients (and electrolytes) are absorbed in the small intestine, the colon absorbs and recycles water and electrolytes that failed to be absorbed in the small intestine. But it can't do that when MC is active.
When MC is active, electrolytes are typically not well-absorbed in the small intestine, and this is actually the originating cause of D, with MC (or any other D-dominant GI issues). Sodium in particular remains unabsorbed, and excess sodium in the lumen (the interior of the intestines) triggers D. When this excess of unabsorbed electrolytes lands in the colon, it triggers even worse D, because it prompts the colon to secrete water and electrolytes into the lumen (rather than to remove and recycle them), and this causes the watery D that is typical of most cases of MC.
I realize that this is not exactly what is happening in your case, because you are not having watery D, but the multiple BMs and your dehydration issues are a clear sign that your electrolytes are being malabsorbed. My point out of all this explanation is to illustrate why we need to drink not only water, but we need to replace lost electrolytes, as well, because they are not being recycled, as they normally would be.
Some members have used Pedialyte to help replenish electrolytes, and some use Gatorade (though Gatorade is loaded with sugar, which is not good when we are reacting). There is also a recipe for formulating our own electrolyte supplement in this article about Dehydration and Electrolyte Imbalance. FYI, the author of that article is a practicing MD (she's a pediatrician), who has MC and who is in remission by diet changes (and occasional use of antihistamines) alone.
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.
Welcome Elisha :) As you already can see Tex is an expert and explains things so well. You might want to buy his book. It's a great source of information. If you click on the picture of it in the upper right hand corner of this page, it will take you right to Amazon.
Seems like the coconut water is helping to keep you hydrated. It's a better alternative to gatorade, which has coloring and lots of sugar.
As Tex said, make sure you reduce your budesonide dose if you start to get C..... even if the doctor said to do a month. Dosage of this drug is not set in stone. I had to reduce it as needed... and when I didn't do it fast enough, I not only got C, but I also was in pain. I have been off it for over a year now and doing well.
Sometimes when I ate, I use to have a hard time taking a full breath. Now that I take OTC antihistamines, I no longer get that at all.
Congrats on taking the step of going gluten and dairy free. You are on the path to feeling better. Diet is key and if, down the road, you are still having symptoms, you might want to also drop soy from your diet.
Keep us posted on your progress
Leah
Seems like the coconut water is helping to keep you hydrated. It's a better alternative to gatorade, which has coloring and lots of sugar.
As Tex said, make sure you reduce your budesonide dose if you start to get C..... even if the doctor said to do a month. Dosage of this drug is not set in stone. I had to reduce it as needed... and when I didn't do it fast enough, I not only got C, but I also was in pain. I have been off it for over a year now and doing well.
Sometimes when I ate, I use to have a hard time taking a full breath. Now that I take OTC antihistamines, I no longer get that at all.
Congrats on taking the step of going gluten and dairy free. You are on the path to feeling better. Diet is key and if, down the road, you are still having symptoms, you might want to also drop soy from your diet.
Keep us posted on your progress
Leah