Hello, This is all new to me - joining a support group!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
Hello, This is all new to me - joining a support group!
After years of 'upset' I have been finally diagnosed with CC. They were looking for coeliac disease as my brother, nephew and great niece all have it. I have had a negative result on that by way of biopsy on the bowel and confirmation of CC. I have just finished a course of Entrecote (3 tabs for 4 weeks, 2 tabs for 4 weeks and 1 tab for 4 weeks) only to find myself back to square one with bad D. I am now in despair having had to cancel a weekend away and wonder is there any hope? My specialist in England has said that it isn't food related but having read some of your messages on the message board it seems he may be wrong? How on earth do really find out what you have a reaction to? Is it worth me trying and if so how and where do I start? Please help!! I would also be interested to know how to cope when you have to go out as I am beginning to become a bit of a recluse.
Welcome to the board and I'm sorry you need to be here though.
The thing that stood out to in your post is that the Entocort wasn't given nearly long enough to even give it a chance. Most people stay on it at least 6 months. Some even begin with SHORT TERM prednisone.
Please read as much as you can from the site and ask questions. It is sometimes extremely difficult to get a handle on this disease but I'm quite sure you can improve.
Read, Read, Read information and past posts. See what direction of treatment sounds best for you and stick to it long enough to see some real results.
Again, welcome.
Shirley
The thing that stood out to in your post is that the Entocort wasn't given nearly long enough to even give it a chance. Most people stay on it at least 6 months. Some even begin with SHORT TERM prednisone.
Please read as much as you can from the site and ask questions. It is sometimes extremely difficult to get a handle on this disease but I'm quite sure you can improve.
Read, Read, Read information and past posts. See what direction of treatment sounds best for you and stick to it long enough to see some real results.
Again, welcome.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning Inconvinced and Welcome to the Board.
I 100% agree with Shirley on her observation of the time you were on Entocort. It was not nearly long enough to produce a positive result when you had to stop using it.
Also, read and do use the search tool to specifically find subjects that are of interest to you.
Diet has been a real key to most of us with this disease and that means no gluten for the majority of us. Some of us are also intolerant to other foods as you will note under most people's information on the left side of their posts.
Sorry to see you had to find us but you have found the best source of information anywhere on the internet.
Maggie
I 100% agree with Shirley on her observation of the time you were on Entocort. It was not nearly long enough to produce a positive result when you had to stop using it.
Also, read and do use the search tool to specifically find subjects that are of interest to you.
Diet has been a real key to most of us with this disease and that means no gluten for the majority of us. Some of us are also intolerant to other foods as you will note under most people's information on the left side of their posts.
Sorry to see you had to find us but you have found the best source of information anywhere on the internet.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
We are very glad you found us. The doctors don't seem to really know as much about MC (CC and LC) as the patients on this board.
When I found the PP over a year and a half ago, I read as much as I could. I got my diagnosis on a Friday and by Monday I was gluten free. The D stopped not too long afterwards but within a month or two, I had symptoms again. Because of the PP, I suspected soy and it was the culprit as confirmed by www.enterolab.com
I am using diet (gluten, dairy and soy free) alone, no meds at all.
I am also educating my GI. She should be paying me.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
Welcome, Inconvenienced (appropriate name!)
So glad you joined us.
You have already received some great answers. Yes, unfortunately, most docs know little about MC (which includes both LC and CC). But the good news is that the info you need to get well can be found in this website, from others who have had this disease. You will need to take charge of your own health.
The type of gluten intolerance that MCers have does not usually show up on the traditional tests for celiac disease. (My celiac tests were normal, and yet I am extremely sensitive to gluten.....wheat, rye, barley, and oats).
The only lab I know of that tests for our kind of gluten intolerance is Dr. Fine's Enterolab in Texas. Check out the following websites for more info: www.finerhealth.com and www.enterolab.com
Dr. Fine uses a stool test to check for gluten sensitivity. Actually, some of our members here from other countries (Spain, Hong Kong) have sent stool samples all the way to his lab! Dr. Fine also tests for other food intolerances, since they often go along with the gluten intolerance.
I can relate to your fear of going out. This can be a very isolating disease. Some folks wear adult diapers in case of emergency. It helps to carry a change of clothes with you at times. Also to know the location of every public restroom nearby. Have you been given anything to slow down the diarrhea? Lomotil (prescription) or over-the counter anti-diarhheals?
There IS hope, as you will see from reading this Board. I have controlled my MC now for 9 years with diet alone. It usually takes months to respond to the gluten-free diet, but you should see some results (less bloating, decrease in frequency, urgency) sooner.
Looking forward to further chats.
Love,
Polly
So glad you joined us.
You have already received some great answers. Yes, unfortunately, most docs know little about MC (which includes both LC and CC). But the good news is that the info you need to get well can be found in this website, from others who have had this disease. You will need to take charge of your own health.
The type of gluten intolerance that MCers have does not usually show up on the traditional tests for celiac disease. (My celiac tests were normal, and yet I am extremely sensitive to gluten.....wheat, rye, barley, and oats).
The only lab I know of that tests for our kind of gluten intolerance is Dr. Fine's Enterolab in Texas. Check out the following websites for more info: www.finerhealth.com and www.enterolab.com
Dr. Fine uses a stool test to check for gluten sensitivity. Actually, some of our members here from other countries (Spain, Hong Kong) have sent stool samples all the way to his lab! Dr. Fine also tests for other food intolerances, since they often go along with the gluten intolerance.
I can relate to your fear of going out. This can be a very isolating disease. Some folks wear adult diapers in case of emergency. It helps to carry a change of clothes with you at times. Also to know the location of every public restroom nearby. Have you been given anything to slow down the diarrhea? Lomotil (prescription) or over-the counter anti-diarhheals?
There IS hope, as you will see from reading this Board. I have controlled my MC now for 9 years with diet alone. It usually takes months to respond to the gluten-free diet, but you should see some results (less bloating, decrease in frequency, urgency) sooner.
Looking forward to further chats.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
Than you Polly, you sound lovely and have given me much hope. I have just checked out the websites you suggested and found them very interesting. My specialist has prescribed colestyramine which I hope will take effect soon (I've only been taking the sachets 4 days and things seem to be slowing down) fingers crossed!
Thank you Joan for the info that Polly is a Doctor which gives me even more hope! I must say that I have no idea of the meaning of the flag pole, would you enlighten me please?
Many thanks again I'm so glad that I found this site. Bless you all .
Thank you Joan for the info that Polly is a Doctor which gives me even more hope! I must say that I have no idea of the meaning of the flag pole, would you enlighten me please?
Many thanks again I'm so glad that I found this site. Bless you all .
Welcome, Inconvenienced. Last June I was where you are now, with a recent diagnosis of LC and feeling very nervous if I needed to go out, even for grocery shopping. I would take a couple of Imodium right before going out hoping that it would delay the D until I got home. Mostly it did, but there were enough close calls that it didn't really help my mental attitude. It was pretty depressing. Then I found this Forum, and first felt hopeful that I could get my old life back. I went gluten free right away, (I already had been dairy free for 5 years) and sent in a stool sample to Enterolab. It confirmed my gluten sensitivity and also showed that I am soy intolerant as well. I got much better within several weeks and never had to go on any medications, like Entocort. A bunch of other problems, like asthma and leg cramps went away too. With your family history of Celiac Disease, a gluten sensitivity is highly likely. Most of us have found that unless the food sensitivity issue is addressed, any improvement on medication is most likely only temporary.
The "flagpole" emoticon......Well, in America when someone has an idea they want to present and see what sort of reception it might have, they will often say "Lets run that up the flagpole and see if anyone salutes". So the emoticon has a flag running up the flagpole with "B.S.", meaning bullshit, on it to indicate that the idea is just that.
I'm sorry for the reason you are here, but we all support each other and share the journey to health which is different for each of us.
Rosie
The "flagpole" emoticon......Well, in America when someone has an idea they want to present and see what sort of reception it might have, they will often say "Lets run that up the flagpole and see if anyone salutes". So the emoticon has a flag running up the flagpole with "B.S.", meaning bullshit, on it to indicate that the idea is just that.
I'm sorry for the reason you are here, but we all support each other and share the journey to health which is different for each of us.
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
InconveniencedGood name it might even have its own emoticon
I see you are a living in UK. I am a Brit, but living in Hong Kong. But there are people from the UK on this board. You have already got lots of advice and I am sure you are reading the posts - they will tell you more then most doctors ever will. I have been on 9mg of Entocort for 7 months and (together with a GF, DF, SF, EF diet) have seen gradual improvement (with some ups and downs). I am not perfect, but when I look back on the lack of control I had 7 months ago life is really much better.
The connections between Celiac and MC are becoming well documented. E.g. many Celiacs that cannot control their symptoms with a gluten free diet alone are found to have MC.
I will add one other thing that I am learning. Our immune systems are out of balance and you should check out if you are getting enough Vitamin D. Many of us are likely to have a low level of Vit D (like Celiacs).
Again a warm welcome to the board, All the best in your journey to remission, Ant
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Greetings INCONVENIENCED-----yup and at many times we all have been *inconvenienced* by this crappy disease--
some worse than others----some can tolerate any *drug* to try and control/cure it--some cannot--
like we often say----*tis all trial and error*
Entocort was not good for me---Asacol neither---- in my favor was Colazal---
I didnt have too many food allergies----just a few *ingrediants* and what helped me out was coming here and *learning*--
Wishing U the very best reaching that wellness road----
And every so often we all FLY that -------
Barbara
some worse than others----some can tolerate any *drug* to try and control/cure it--some cannot--
like we often say----*tis all trial and error*
Entocort was not good for me---Asacol neither---- in my favor was Colazal---
I didnt have too many food allergies----just a few *ingrediants* and what helped me out was coming here and *learning*--
Wishing U the very best reaching that wellness road----
And every so often we all FLY that -------
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi There Inconvenience!! My! That's the Million Dollar Word!!
First off, your specialist "should not" have had you wean off of the Entocort that quick.
You have inflammation in your colon and if it's is continuing to be inflammed by ingesting certain foods, you will need longer use of Entocort to get that inflammation under control.
Here is information about the Questran which is another name for cholestryamine that your specialist has you taking now.. It also comes in tablet form and called Colestid. It seems to work well for people that have the bile dumping after gall bladder removal, but when I took it for CC, it worked for about a week and then stopped working.
Many patients experience diarrhea after gallbladder removal. In fact, it is so common that surgeons often warn patients of this possibility before gallbladder-removal surgery (cholecystectomy). In people who have always had problems with constipation, this loosening of stools may actually be a benefit that leads to more regular bowel habits after surgery. In contrast, patients who had frequent or loose stools before cholecystectomy may experience worsening of their symptoms and significant diarrhea after the operation.Overall, studies have found about 10-20 percent of patients experience diarrhea after a cholecystectomy. The reason for this is unknown, but several theories have been postulated. The most widely accepted explanation relates to bile acids. Normally the gallbladder stores bile (containing bile acids) in between meals. During a meal, the gallbladder releases its contents into the intestine to facilitate digestion and absorption. The bile acids accomplish this task. After digestion is complete, the bile acids are reabsorbed in the last part of the small intestine. Bile acids that escape absorption can enter the colon, where they can irritate the colon's lining and lead to diarrhea. After a cholecystectomy, there is no storage site for bile in between meals. Bile acids are constantly released into the small intestine and many more can escape into the colon. Thus, diarrhea is more likely to occur.
Based on the theory of bile acid injury to the colon, treatment for diarrhea after gallbladder surgery often involves cholestyramine (Questran). By binding bile acids, Questran keeps them from irritating the colon, thereby preventing diarrhea.
If you have the finances I highly recommend that you have your stool tested by Entero Lab.
That would tell you if you definitely have food intolerances and give you an idea of what you need to start eliminating from your diet to help get that inflammation down.
If you can't afford that right now, you can first start out with eliminating anything that contains wheat, oats, barley & rye. Don't let yourself get overwhelmed starting out thinking that you have to stop foods with gluten & casein & soy all at once.
Keep a food diary. You'll be able to soon tell what sets that diarrhea off by irritating or adding to the inflammation.
Sorry for this being so long, but I could go on & on.
Dee~~~
First off, your specialist "should not" have had you wean off of the Entocort that quick.
You have inflammation in your colon and if it's is continuing to be inflammed by ingesting certain foods, you will need longer use of Entocort to get that inflammation under control.
Here is information about the Questran which is another name for cholestryamine that your specialist has you taking now.. It also comes in tablet form and called Colestid. It seems to work well for people that have the bile dumping after gall bladder removal, but when I took it for CC, it worked for about a week and then stopped working.
Many patients experience diarrhea after gallbladder removal. In fact, it is so common that surgeons often warn patients of this possibility before gallbladder-removal surgery (cholecystectomy). In people who have always had problems with constipation, this loosening of stools may actually be a benefit that leads to more regular bowel habits after surgery. In contrast, patients who had frequent or loose stools before cholecystectomy may experience worsening of their symptoms and significant diarrhea after the operation.Overall, studies have found about 10-20 percent of patients experience diarrhea after a cholecystectomy. The reason for this is unknown, but several theories have been postulated. The most widely accepted explanation relates to bile acids. Normally the gallbladder stores bile (containing bile acids) in between meals. During a meal, the gallbladder releases its contents into the intestine to facilitate digestion and absorption. The bile acids accomplish this task. After digestion is complete, the bile acids are reabsorbed in the last part of the small intestine. Bile acids that escape absorption can enter the colon, where they can irritate the colon's lining and lead to diarrhea. After a cholecystectomy, there is no storage site for bile in between meals. Bile acids are constantly released into the small intestine and many more can escape into the colon. Thus, diarrhea is more likely to occur.
Based on the theory of bile acid injury to the colon, treatment for diarrhea after gallbladder surgery often involves cholestyramine (Questran). By binding bile acids, Questran keeps them from irritating the colon, thereby preventing diarrhea.
If you have the finances I highly recommend that you have your stool tested by Entero Lab.
That would tell you if you definitely have food intolerances and give you an idea of what you need to start eliminating from your diet to help get that inflammation down.
If you can't afford that right now, you can first start out with eliminating anything that contains wheat, oats, barley & rye. Don't let yourself get overwhelmed starting out thinking that you have to stop foods with gluten & casein & soy all at once.
Keep a food diary. You'll be able to soon tell what sets that diarrhea off by irritating or adding to the inflammation.
Sorry for this being so long, but I could go on & on.
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
WOW, Dee!
What a terrific discussion! I think I will nominate you to be our substitute researcher until Tex returns. He would be MOST impressed with your post.......it's scientific, accurate, relevant, and detailed. Nice job!
Love,
Polly
What a terrific discussion! I think I will nominate you to be our substitute researcher until Tex returns. He would be MOST impressed with your post.......it's scientific, accurate, relevant, and detailed. Nice job!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
I am overwhelmed with the welcome response from you all and I obviously have a lot to learn. There is a lot of information to 'digest' 
and I will read on. Thank you all for your suggestions and time. I will keep you posted on progress.
After reading through all the messages (including my own) I have realised I am nameless. But not any more....
Warm Regards to you all
Jenny
and I will read on. Thank you all for your suggestions and time. I will keep you posted on progress.After reading through all the messages (including my own) I have realised I am nameless. But not any more....
Warm Regards to you all
Jenny
