Hello,
I just joined this group!
I was diagnosed with CC this summer after blood tests and a sigmoidoscope. I've been on 9mg (three tablets) a day for about 3 months. After a 10 days to two weeks my bathroom habits returned to normal and I seemed pretty fine.
I have been lucky other than sudden urgent needs to get to the toilet immediately, I have never suffered from bloating, stomach pain, or any other physical symptom except tiring out easily and some additional joint and muscle pain except. The entocort took care of the symptoms and eased the tiring out so quickly.
But recently I've been getting amazingly tired very easily.
I am a vegan and stay away from most wheat (I know that gluten is in a lot of things besides wheat), but I never noticed any changes from diet except that a raw food meal would cause me problems.
My question is: even though the entocort has taken care of my diarrhea is it unusual to still be suffering from extreme fatigue?
Thanks for any info you can help me with.
Best of all to all of you,
Frank
Entocort works fine, but I fatigue easily
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
No, I don't believe it is unusual and I believe it may take some time to recover from the fatigue.
Welcome to the group and please don't be afraid to ask questions and discuss any symptom or problem.
I know further responses to your post will be forthcoming very soon.
I really don't know if you can get enough protein to feel well on a vegan diet. Others here have had more experience and are more knowlegeable.
Again, welcome. Great group of people here.
Shirley
Welcome to the group and please don't be afraid to ask questions and discuss any symptom or problem.
I know further responses to your post will be forthcoming very soon.
I really don't know if you can get enough protein to feel well on a vegan diet. Others here have had more experience and are more knowlegeable.
Again, welcome. Great group of people here.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Frank,
Welcome to the board. For many people with MC, Entocort EC does a pretty good job of resolving most of the symptoms, by suppressing the inflammation that causes MC. Of course, it does not prevent the inflammation from being regenerated, and the constantly renewed inflammation may be the source of your fatigue symptoms. Many of us find it necessary to adhere to a strict diet, also, in order to resolve all our symptoms.
You are already utilizing diet control, I see, so you are well on your way toward remission. Your problem may be soy. Most of us are sensitive to gluten and casein, and at least half of us, (it's beginning to appear that it may be significantly more than half of us), are very sensitive to soy and all it's derivatives. In fact, many of us seem to be more sensitive to soy, than we are to gluten or casein. It's possible to have certain symptoms, (such as fatigue, brain fog, etc.), without having GI symptoms, (such as bloating, diarrhea, etc.)
With a vegan diet, as Shirley mentioned, adequate protein intake can become a major problem, for those who are sensitive to soy, because soy-sensitivity typically extends to most/all other legumes.
I'm just guessing, of course, since you may or may not be sensitive to soy. Sometimes, food sensitivities tend to fool us, and they cam be difficult to track down. One way to take the doubt out of it, would be to order stool testing from Enterolab, in Dallas, TX. Their tests for food sensitivities are by far the most accurate and reliable tests currently available. They are several orders of magnitude more sensitive and reliable than the blood tests, for example, since the antibodies are developed in the gut, and by the time they become numerous enough in the bloodstream, for the blood tests to detect them, (as with the classic celiac blood tests, for example), the disease has usually progressed to the "mature" stage.
Also, nutrient malabsorption is a problem for most of us with this disease, so your fatigue may be due to cumulative nutrient deficiencies. Many of us become deficient in the "B" vitamins, especially B-12 and folic acid, and we may also be deficient in other vitamins and minerals. Most of us, (in fact, this probably includes most people in the general population), are low on magnesium, which tends to cause cramps, restless leg syndrome, the symptoms of chronic fatigue syndrome, etc.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to the board. For many people with MC, Entocort EC does a pretty good job of resolving most of the symptoms, by suppressing the inflammation that causes MC. Of course, it does not prevent the inflammation from being regenerated, and the constantly renewed inflammation may be the source of your fatigue symptoms. Many of us find it necessary to adhere to a strict diet, also, in order to resolve all our symptoms.
You are already utilizing diet control, I see, so you are well on your way toward remission. Your problem may be soy. Most of us are sensitive to gluten and casein, and at least half of us, (it's beginning to appear that it may be significantly more than half of us), are very sensitive to soy and all it's derivatives. In fact, many of us seem to be more sensitive to soy, than we are to gluten or casein. It's possible to have certain symptoms, (such as fatigue, brain fog, etc.), without having GI symptoms, (such as bloating, diarrhea, etc.)
With a vegan diet, as Shirley mentioned, adequate protein intake can become a major problem, for those who are sensitive to soy, because soy-sensitivity typically extends to most/all other legumes.
I'm just guessing, of course, since you may or may not be sensitive to soy. Sometimes, food sensitivities tend to fool us, and they cam be difficult to track down. One way to take the doubt out of it, would be to order stool testing from Enterolab, in Dallas, TX. Their tests for food sensitivities are by far the most accurate and reliable tests currently available. They are several orders of magnitude more sensitive and reliable than the blood tests, for example, since the antibodies are developed in the gut, and by the time they become numerous enough in the bloodstream, for the blood tests to detect them, (as with the classic celiac blood tests, for example), the disease has usually progressed to the "mature" stage.
Also, nutrient malabsorption is a problem for most of us with this disease, so your fatigue may be due to cumulative nutrient deficiencies. Many of us become deficient in the "B" vitamins, especially B-12 and folic acid, and we may also be deficient in other vitamins and minerals. Most of us, (in fact, this probably includes most people in the general population), are low on magnesium, which tends to cause cramps, restless leg syndrome, the symptoms of chronic fatigue syndrome, etc.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
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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Franklight
- Posts: 7
- Joined: Mon Nov 22, 2010 7:37 pm
Thank you, everyone who shared info with me on this. I am doing sooooo much better.
I'm now weaned off Endocort, have removed fresh fruits and veggies from my diet except for an occasional apple or orange and switched frm ibuprofen to Tramadol.
I have my energy back and feel almost 100%. You all really helped me.
Thank you for the service you provide.
Much, much appreciation,
Frank
I'm now weaned off Endocort, have removed fresh fruits and veggies from my diet except for an occasional apple or orange and switched frm ibuprofen to Tramadol.
I have my energy back and feel almost 100%. You all really helped me.
Thank you for the service you provide.
Much, much appreciation,
Frank
Could anyone tell me how long before one notices improvement from Endocort? I just took my third dose but am one of those Type A's:)
Also, vitamins and minerals.....I take a multi, B and D supplements, calcium, and fish oil. All are gluten-free. Just curious if these aggravate the LC though.
I hear back on Monday as to the results of the celiac test. Even if negative I'll get additional testing through Enterolab. Perhaps the tests for gluten and soy. I've never had an allergy in my entire life.
Is it unusual for this to have started in a blink of an eye? Literally, this happened after dinner about 1-1/2 months ago, and seemed like it came out of nowhere. As much as I try to reason, beg, plead, with my gut, it's not cooperating.
I actually do really well as long as I don't eat! Since that's not an option I've been eating small portions several times a day.
I'm really happy I found you guys!
Laine
Also, vitamins and minerals.....I take a multi, B and D supplements, calcium, and fish oil. All are gluten-free. Just curious if these aggravate the LC though.
I hear back on Monday as to the results of the celiac test. Even if negative I'll get additional testing through Enterolab. Perhaps the tests for gluten and soy. I've never had an allergy in my entire life.
Is it unusual for this to have started in a blink of an eye? Literally, this happened after dinner about 1-1/2 months ago, and seemed like it came out of nowhere. As much as I try to reason, beg, plead, with my gut, it's not cooperating.
I actually do really well as long as I don't eat! Since that's not an option I've been eating small portions several times a day.
I'm really happy I found you guys!
Laine
Hi Laine,
It can take up to 3-4 weeks for Entocort to take effect. Some people find relief sooner, but be patient - it should eventually kick in.
Yes, many of us were fine one day, and the next we were running to the bathroom constantly. Some of us have a pretty good idea what triggered our MC; many of us have no idea or only a guess.
Most of us take vitamins, but we have to be careful with them because they can contain soy, corn, and other ingredients to which we are intolerant. I order my vitamins from Freeda Vitamins (online) because they are free of the most common allergins. If you do a search for vitamins on this board, you'll find several discussions about the brands we buy.
Gloria
It can take up to 3-4 weeks for Entocort to take effect. Some people find relief sooner, but be patient - it should eventually kick in.
Yes, many of us were fine one day, and the next we were running to the bathroom constantly. Some of us have a pretty good idea what triggered our MC; many of us have no idea or only a guess.
Most of us take vitamins, but we have to be careful with them because they can contain soy, corn, and other ingredients to which we are intolerant. I order my vitamins from Freeda Vitamins (online) because they are free of the most common allergins. If you do a search for vitamins on this board, you'll find several discussions about the brands we buy.
Gloria
You never know what you can do until you have to do it.
Just received the news today that I do not have Celiac disease. However, I'm taking advice from this forum and sent for a kit from Enterolab. In the meantime I have a question about Endocort. Until I get the test results back, if I were to eat gluten, would Endocort prevent symptoms? Just wondering if it keeps gluten intolerance symptoms at bay while on the drug.
Thanks again for all your help and advice.l
Laine
Thanks again for all your help and advice.l
Laine
Laine,
It can take up to 3-4 weeks to take effect. You might get your Enterolab test results at the same time or before Entocort begins to work.
I don't believe that Entocort will keep gluten intolerance symptoms at bay. I went off gluten before I received my test results, but any time I've accidently eaten gluten, I will have problems even though I'm on Entocort.
Gloria
It can take up to 3-4 weeks to take effect. You might get your Enterolab test results at the same time or before Entocort begins to work.
I don't believe that Entocort will keep gluten intolerance symptoms at bay. I went off gluten before I received my test results, but any time I've accidently eaten gluten, I will have problems even though I'm on Entocort.
Gloria
You never know what you can do until you have to do it.
Thanks again Gloria. I appreciate your replys.
I've been doing well on the Entrocort and, as I mentioned, I tested negative for celiac. I sent for the gluten test kit from Enterolab but in the meantime have eaten small amounts of gluten sort of as a means of conducting my own test. I have not had any problems. So I was curious if the the Entrocort was preventing gluten reactions.
Thanks again Gloria!
Laine
I've been doing well on the Entrocort and, as I mentioned, I tested negative for celiac. I sent for the gluten test kit from Enterolab but in the meantime have eaten small amounts of gluten sort of as a means of conducting my own test. I have not had any problems. So I was curious if the the Entrocort was preventing gluten reactions.
Thanks again Gloria!
Laine
Laine wrote:So I was curious if the the Entrocort was preventing gluten reactions.
It might be - it does for some people. Another possibility is that some of us are sort of like celiacs, in that we don't always react, until we accrue a certain amount of damage to our intestines. And, in addition, we also each have our own personal "threshold" for reactions. IOW, we have to ingest more than a certain minimum amount of gluten, before it causes enough inflammation to trigger a flare. Below that threshold, we have some inflammation, but our body sort of tolerates it and tries to ignore it. It's sort of like taking a little bit of poison, regularly, but keeping it below a lethal dose. Once we surpass that threshold, though, the inflammation gets out of hand, and we react. Entocort tends to raise that threshold, to allow us to "tolerate" somewhat more gluten, before we react.
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 guys,
I know prednisone can cause GI upset - reflux type symptoms. Has anyone struck this with budesonide? I had bad pain in my chest so my GP (family doctor) wasn't so sure but put me on ranitidine which seems to have worked (I was chugging antacid before this without relief). The pain was worse with deep breathing and exertion - quite weird! not like normal indigestion I've had before.
I'm finding people don't know much about oral budesonide! I found the pharmacist was helpful though.
I know prednisone can cause GI upset - reflux type symptoms. Has anyone struck this with budesonide? I had bad pain in my chest so my GP (family doctor) wasn't so sure but put me on ranitidine which seems to have worked (I was chugging antacid before this without relief). The pain was worse with deep breathing and exertion - quite weird! not like normal indigestion I've had before.
I'm finding people don't know much about oral budesonide! I found the pharmacist was helpful though.
Hi Kate,
I might have overlooked it, but I don't recall anyone posting about budesonide causing that particular problem before. But there's always a possibility that someone had the problem and didn't connect it with budesonide.
Tex
I might have overlooked it, but I don't recall anyone posting about budesonide causing that particular problem before. But there's always a possibility that someone had the problem and didn't connect it with budesonide.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kate
I have taken ranitidine, for GERD/GORD pain. ( i have not taken budesonide at any stage for the MC)
Ranitidine is a H2 blocker (h2 being a type of antihistamine)
histamine/mast cell is a very common issue for many people here.
like my reply in your other post, this symptom is an indicator of inflammation. Remove/minimise the triggers and things can improve.
If you are having this GERD type pain, some other hints that will help;
- dont have hot drinks near a meal
- have smaller meals spread throughout the day, avoid having main meal at night (I had to eat 2 hours before bedtime to avoid issues)
- sleep on left side (sounds weird but it works)
- elevate the bed head
- take high doses of Vit d3, i use a lingual product BioCeuticals Vit D3 forte. I take 5000iu per day.
- avoid activities that involve bending straight after eating. (ie making bed, vacuuming, cleaning the shower etc)
hope this helps
I have taken ranitidine, for GERD/GORD pain. ( i have not taken budesonide at any stage for the MC)
Ranitidine is a H2 blocker (h2 being a type of antihistamine)
histamine/mast cell is a very common issue for many people here.
like my reply in your other post, this symptom is an indicator of inflammation. Remove/minimise the triggers and things can improve.
If you are having this GERD type pain, some other hints that will help;
- dont have hot drinks near a meal
- have smaller meals spread throughout the day, avoid having main meal at night (I had to eat 2 hours before bedtime to avoid issues)
- sleep on left side (sounds weird but it works)
- elevate the bed head
- take high doses of Vit d3, i use a lingual product BioCeuticals Vit D3 forte. I take 5000iu per day.
- avoid activities that involve bending straight after eating. (ie making bed, vacuuming, cleaning the shower etc)
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama