About 2 1/2 years ago I was diagnosed with LC and UC and put on Asacol. Originally I was told I would be on the medication for about a month and after 6 months they told me I would be on it for life. Originally I had severe side pains and diarrhea about 10 times a day. Since being on the medication most of the side pains are gone and I only have D about 4 times a day. I am only 28 years old and not happy with the idea of living the rest of my life like this. I have not had the effect of losing weight though I am gaining it. In fact over the last 2 1/2 years I have gained over 30 pounds regardless of the excercise and healthy eating I am doing.
I recently found out about Celiac disease which is basically an allergy to gluten. (my grandmother also believes she has this hereditary disease). I went on a gluten free diet for about 3 weeks and actually lost 8 pounds and had no diarrehea. I went back to my GI after bringing gluten back in my diet and asked to be tested for celiac. I got the results yesterday which showed I did not have any evidence of this disease but he is going to run further tests.
I am physically and mentally exhausted from all fo this and would love to talk to someone who as gone through some of the same stuff I have. Please reply so we can compare experiences. I am very depressed and need some resolve.
my experience
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jen,
Welcome to our online family. You have probably already discovered that no one truly understands this disease, unless they have it, and that applies to the GI docs, also. There are only a handful of GI docs in this country who truly understand gluten sensitivity, and MC. I'm not sure how they fare, when treating UC, but they have a very poor record, (as a group), when it comes to treating MC, and/or gluten sensitivity.
Considering your experience with the GF diet, it is almost guaranteed that you are gluten sensitive. I don't know how your doctor checked for celiac disease, but the classic celiac blood tests almost never detect the type of gluten sensitivity that we, (those of us with LC and CC), have. The only truly reliable test for gluten sensitivity, (without full blown celiac disease), is a stool test, developed by a GI doc in Dallas, who has MC himself. He has developed a lab, (Enterolab), in Dallas, and it can be found here:
http://www.finerhealth.com/
The GF diet works for all IBDs, since a very high percentage of patients with IBDs are gluten sensitive. The GI docs have been very slow to catch on to this, though, and many of them will deny that diet can control the symptoms, (they are trained to prescribe drugs, not recommend diets).
For patients who do not wish to follow a restrictive diet for the rest of their lives, a maintenance dose of some appropriate med is usually necessary. I have no idea how well Asacol works for UC, but we have found that many of us are either intolerant to it, or it simply does not work for us. Many of us are also casein intolerant, (casein is the primary protein in milk), and Asacol contains lactose, (the sugar in milk), which probably is the reason why Asacol causes diarrhea problems for some of us.
We have found budesonide, (Entocort), to be much more effective in treating MC, (and it is also effective against UC), without the risk of severe side effects that most other corticosteroids impose. Except for a few of us, who can't seem to hit on the right combination of treatment, most of us are able to live normally, by diet alone, or by a maintenance dose of our choice of meds, (usually Entocort). A few of us find it necessary, (or advantageous), to use a combination of diet and meds. By fine tuning our treatment programs to suit our personal situations, we are able to achieve remission, and we have normal BMs, (bowel movements), unless we slip up on our treatment, (whether diet or meds).
About seven years ago, when I was sick as a dog, with uncontrollable diarhea, and all sorts of flu-like symptoms, I would feel as though I had been hit by a truck, when I got out of bed most mornings, and the "brain fog" would keep me from thinking clearly. My GI doc couldn't find anything wrong with me, and I couldn't find anyone else who had similar symptoms, so I had almost given up hope, and I had resolved myself to live the rest of my life in mysery. Then one day I discovered the concept of gluten sensitivity, and the next day, I started a GF diet. The rest, as they say, is history. I had to cut out a few more items, (such as dairy, corn, and most vegetables, (especially lettuce), but after fine tuning my diet, my gut began to heal, and my reactions, (and all my symptoms), eventually disappeared.
Like you, I now have a problem with gaining weight, (I suspect that for some of us, IBDs may cause the body to reprogram it's metabolism control mechanism, to counter the malabsorption problems caused by IBDs), but I'm no longer chained to the bathroom, and I feel great. Now, I don't mind working hard, to keep my weight under control, because I feel like working, again.
Feel free to ask anything that comes to mind, and we will try to help in any way that we can, so that you can fine tune your own treatment program, and you can get your life back. We've been there, done that, and when we say that we understand how you feel - believe me, we really do understand exactly how you feel.
I wish you the best of luck, as you begin your journey back to health.
Tex
Welcome to our online family. You have probably already discovered that no one truly understands this disease, unless they have it, and that applies to the GI docs, also. There are only a handful of GI docs in this country who truly understand gluten sensitivity, and MC. I'm not sure how they fare, when treating UC, but they have a very poor record, (as a group), when it comes to treating MC, and/or gluten sensitivity.
Considering your experience with the GF diet, it is almost guaranteed that you are gluten sensitive. I don't know how your doctor checked for celiac disease, but the classic celiac blood tests almost never detect the type of gluten sensitivity that we, (those of us with LC and CC), have. The only truly reliable test for gluten sensitivity, (without full blown celiac disease), is a stool test, developed by a GI doc in Dallas, who has MC himself. He has developed a lab, (Enterolab), in Dallas, and it can be found here:
http://www.finerhealth.com/
The GF diet works for all IBDs, since a very high percentage of patients with IBDs are gluten sensitive. The GI docs have been very slow to catch on to this, though, and many of them will deny that diet can control the symptoms, (they are trained to prescribe drugs, not recommend diets).
For patients who do not wish to follow a restrictive diet for the rest of their lives, a maintenance dose of some appropriate med is usually necessary. I have no idea how well Asacol works for UC, but we have found that many of us are either intolerant to it, or it simply does not work for us. Many of us are also casein intolerant, (casein is the primary protein in milk), and Asacol contains lactose, (the sugar in milk), which probably is the reason why Asacol causes diarrhea problems for some of us.
We have found budesonide, (Entocort), to be much more effective in treating MC, (and it is also effective against UC), without the risk of severe side effects that most other corticosteroids impose. Except for a few of us, who can't seem to hit on the right combination of treatment, most of us are able to live normally, by diet alone, or by a maintenance dose of our choice of meds, (usually Entocort). A few of us find it necessary, (or advantageous), to use a combination of diet and meds. By fine tuning our treatment programs to suit our personal situations, we are able to achieve remission, and we have normal BMs, (bowel movements), unless we slip up on our treatment, (whether diet or meds).
About seven years ago, when I was sick as a dog, with uncontrollable diarhea, and all sorts of flu-like symptoms, I would feel as though I had been hit by a truck, when I got out of bed most mornings, and the "brain fog" would keep me from thinking clearly. My GI doc couldn't find anything wrong with me, and I couldn't find anyone else who had similar symptoms, so I had almost given up hope, and I had resolved myself to live the rest of my life in mysery. Then one day I discovered the concept of gluten sensitivity, and the next day, I started a GF diet. The rest, as they say, is history. I had to cut out a few more items, (such as dairy, corn, and most vegetables, (especially lettuce), but after fine tuning my diet, my gut began to heal, and my reactions, (and all my symptoms), eventually disappeared.
Like you, I now have a problem with gaining weight, (I suspect that for some of us, IBDs may cause the body to reprogram it's metabolism control mechanism, to counter the malabsorption problems caused by IBDs), but I'm no longer chained to the bathroom, and I feel great. Now, I don't mind working hard, to keep my weight under control, because I feel like working, again.
Feel free to ask anything that comes to mind, and we will try to help in any way that we can, so that you can fine tune your own treatment program, and you can get your life back. We've been there, done that, and when we say that we understand how you feel - believe me, we really do understand exactly how you feel.
I wish you the best of luck, as you begin your journey back to health.
Tex
Hi Jen - WELCOME to the group! You've found the right place to ask questions and recieve the ole' "yep, been there, done that" routine!
I am another who has gained weight with this problem. Most on the board, or more than not it seems, have lost weight (and gave it to me, I think!
)
I would guess that if you showed improvement with the GF diet, it must have been doing something for you! You might try a longer regiment with it and see if you continue to loose weight and best of all, eliminate most of your bathroom trips!
Look thru past posts on this site and you'll find many of your questions answered. This is a wonderful "family" who will help you find the answers (through our collective experiences) to most of your questions and concerns!
Again.........
Mars
I am another who has gained weight with this problem. Most on the board, or more than not it seems, have lost weight (and gave it to me, I think!
) I would guess that if you showed improvement with the GF diet, it must have been doing something for you! You might try a longer regiment with it and see if you continue to loose weight and best of all, eliminate most of your bathroom trips!
Look thru past posts on this site and you'll find many of your questions answered. This is a wonderful "family" who will help you find the answers (through our collective experiences) to most of your questions and concerns!
Again.........
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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Carol Arnett
- Gentoo Penguin
- Posts: 423
- Joined: Fri Mar 17, 2006 12:07 pm
to our group!!!I'm so sorry you needed to find us though.
I maintain with Asacol but along with the Asacol I was prescribed Prednisone for a short period of time but ended up taking it about 3 months because I kept having low grade fever and other symptoms with withdrawal. Finally, Entocort was prescribed (I started taking that about a week or so into pred withdrawal and took that for 3 months (including the withdrawal stage). I had no problem with withdrawal after introducing the Entocort. Since that time I have only taken Asacol. I really have my doubts that I would have been able to resolve the problem with Asacol alone but
who knows.Hoping you find something here that will you..........There are several people here who are fantastic resources and they are very generous with their help.
Again, Welcome..........
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
The Asacol has improve the D and has mostly taken away the side pains but I still go at least 4 times a day and that is way too much. The last time I went to my GI about a month ago I requested to be tested for Celiac because my Grandmother has the sensitivity to gluten(she has never been tested but she has done the diet test.) My GI was very open to it. He did an Endoscopy and took the biopsy. It came back with no evidence of Celiac. I was reading some other posts I believe on this page that said if it isn't very advanced then thest won't show it. He is going to do a small intestine x-ray and the antibody test but I'm pretty certain they won't find anything. Once these tests are done I will be going GF. I would like to go off the Asacol and plan to try to stop taking it once I know the GF is working. It is very hard being 27 and having this. I imagine it is hard at any age but I personally is struggling with dealing with this for 50+ years.
I am a very active person but am constantly gaining weight. I have been walking/running for about 3 years and since my stomach problems started 2 1/2 years ago I have gained 30 pounds. No matter how much I exercise or how much I diet I gain. I am now pretty certain that the problem is the lack of nutrition. I wish I had figured all of this out 2 years and 30 pounds ago. Lately I have no energy and struggle to even walk my normal 3 miles. I am definately ready for a change.
I am completely open to all imput from people and willing to try anything for improvement. My grandmother has suggested many vitamins to take. Do any of you take vitamins to help your symptoms?
Thanks for listening to me. Sometimes i feel liike the people around me are tired of hearing me complain and I know they don't understand how hard this disease is.
I am a very active person but am constantly gaining weight. I have been walking/running for about 3 years and since my stomach problems started 2 1/2 years ago I have gained 30 pounds. No matter how much I exercise or how much I diet I gain. I am now pretty certain that the problem is the lack of nutrition. I wish I had figured all of this out 2 years and 30 pounds ago. Lately I have no energy and struggle to even walk my normal 3 miles. I am definately ready for a change.
I am completely open to all imput from people and willing to try anything for improvement. My grandmother has suggested many vitamins to take. Do any of you take vitamins to help your symptoms?
Thanks for listening to me. Sometimes i feel liike the people around me are tired of hearing me complain and I know they don't understand how hard this disease is.
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
Hi Jen and Welcome. I am one of the younger members here too, although we have even had parents of children diagnosed with MC. I am now 35 but developed MC at age 29. I resolved my D initially by stopping use of NSAIDs (Ibuprofen primarily) as my pain reliever of choice. I took it for headaches and severe menstrual cramps. I later went gf as a preventative measure because of what I had read here and what I had read about endometriosis which I also had. I was pleasantly suprised that many of my joint and back pain resolved itself about 2 weeks into the diet. I've never been tested (my bloodwork test for celiac came back negative and my GI didn't even know what MC was...through the help of the wonderful people here, I found my own remission) but have struggled with the diet (it ain't easy). But I find now that I am getting more sensitive. In fact last night my leg started to ache. I suspect, despite trying to be careful, I ingested gluten over the weekend when we were eating out.
Pull up a chair, you have found one of the most supportive groups around.
Katy
Pull up a chair, you have found one of the most supportive groups around.
Katy
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
Greetings Jen----and welcome to our family--- 
I was diagnosed MCC----and in the beginning was running as fast as I could---or waddled faster than the duck for the nearest
I termed mine RUNNING RAPIDS
and I lost weight-----thought I looked *stunning* 
until a friend said *barb, U look anerexic--
Asacol didnt help me-----so I had to do the PRED. + Colazal which was my salvation-----and I was mantained on the Colazal---now I am OK--unless I fool around with things that might trigger me---and they are very few--
I have to say---compared to many here--I was very lucky ---
And I know those *rolling eye-balls*---from family and friends that didnt understand---
Yes---this ailment does depress one and also totally fatigues your whole being----
But know that there is *HELP* ---and we can REALLY give U some good
and 
talks---- 
Thats good medicine too
luve Barbara
I was diagnosed MCC----and in the beginning was running as fast as I could---or waddled faster than the duck for the nearest
I termed mine RUNNING RAPIDS
and I lost weight-----thought I looked *stunning* until a friend said *barb, U look anerexic--Asacol didnt help me-----so I had to do the PRED. + Colazal which was my salvation-----and I was mantained on the Colazal---now I am OK--unless I fool around with things that might trigger me---and they are very few--
I have to say---compared to many here--I was very lucky ---
And I know those *rolling eye-balls*---from family and friends that didnt understand---
Yes---this ailment does depress one and also totally fatigues your whole being----
But know that there is *HELP* ---and we can REALLY give U some good
and talks---- Thats good medicine too
luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Hi Jen and to Our Family.
Yes, we are really a family and some of us have been together for over 6 years and have been through all aspects of CC and MC. Tex and Mars gave you so much information and there isn't much more that I can add other than to say it takes perserverance. I have lived with CC for over 6 years and am just now getting relief with Entocort. I have also been GF for that long. If 4 times a day is your norm you sure are besting me until the last 5 weeks of this disease. I started Entocort and it is like a miracle for me. I also have some other medical problems and getting dosages correct has been a bit of a trial but things are great now.
As someone already said, pull up a chair and really go through our site. You will find a wealth of information and no question is beyond bounds to ask here. We all have been though one aspect or another of this disease.
Again, Welcome and happy to have you here.
Maggie
to Our Family.Yes, we are really a family and some of us have been together for over 6 years and have been through all aspects of CC and MC. Tex and Mars gave you so much information and there isn't much more that I can add other than to say it takes perserverance. I have lived with CC for over 6 years and am just now getting relief with Entocort. I have also been GF for that long. If 4 times a day is your norm you sure are besting me until the last 5 weeks of this disease. I started Entocort and it is like a miracle for me. I also have some other medical problems and getting dosages correct has been a bit of a trial but things are great now.
As someone already said, pull up a chair and really go through our site. You will find a wealth of information and no question is beyond bounds to ask here. We all have been though one aspect or another of this disease.
Again, Welcome and happy to have you here.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Hey Jen-
Like you I am young and have some sort of IBD/MC/UC whatever. I spent most of my last 2 semester in college in absolute pain and too much time in the bathroom.
My Doctor first thought I had nothing, then he thought it was stress, then he thought it was UC- so he put me on Asacol which only made things worse. Then we tried colazol and again it made me worse, then tried enemas and again not feeling well. Finally I moved states, got a new GI, got him to give me a bunch of free samples of entocort and I was on my way to healing.
After taking Dr Fine's tests and showing gluten and casein sensativity I talked to my Gi dr and he said it was all BS an diet has nothing to do with the tea in China. I said thanks- and then went on a gluten and casein free diet. After one year on the diet I am about 85% better. D is mostly gone except when I go overboard or accidentally get some gluten or milk. The mental fog is gone, depression much better.
I used to think I was going to spend the rest of my life on the toilet and not doing a damn thing fun. But now at 25 I am doing things I did as a teenager that I never thought would be possible again. I go rock climbing, rollerblading. etc etc and I am now on an adult baseball team. I never thought I would be able to play baseball again which made my so upset. But now I am playing baseball and playing very very well (I am one of the best hitter and fielders on the team).
I thank everyone on this board for helping me get better. These people are wonderful, kind, generous, and will not think twice about helping one another out. The diet is a very hard to commit fully to but with the support I rec'd from EVERYONE here. We will all be here for you whatever you decide. I am so glad that I found this intolerance/sensitivity and I am not taking all that crap for UC.
Like you I am young and have some sort of IBD/MC/UC whatever. I spent most of my last 2 semester in college in absolute pain and too much time in the bathroom.
My Doctor first thought I had nothing, then he thought it was stress, then he thought it was UC- so he put me on Asacol which only made things worse. Then we tried colazol and again it made me worse, then tried enemas and again not feeling well. Finally I moved states, got a new GI, got him to give me a bunch of free samples of entocort and I was on my way to healing.
After taking Dr Fine's tests and showing gluten and casein sensativity I talked to my Gi dr and he said it was all BS an diet has nothing to do with the tea in China. I said thanks- and then went on a gluten and casein free diet. After one year on the diet I am about 85% better. D is mostly gone except when I go overboard or accidentally get some gluten or milk. The mental fog is gone, depression much better.
I used to think I was going to spend the rest of my life on the toilet and not doing a damn thing fun. But now at 25 I am doing things I did as a teenager that I never thought would be possible again. I go rock climbing, rollerblading. etc etc and I am now on an adult baseball team. I never thought I would be able to play baseball again which made my so upset. But now I am playing baseball and playing very very well (I am one of the best hitter and fielders on the team).
I thank everyone on this board for helping me get better. These people are wonderful, kind, generous, and will not think twice about helping one another out. The diet is a very hard to commit fully to but with the support I rec'd from EVERYONE here. We will all be here for you whatever you decide. I am so glad that I found this intolerance/sensitivity and I am not taking all that crap for UC.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
If you buy calcium carbonate (commonly found it Calcium Caltrate) that helps absorb the extra water in your intestines and helps the D. You will get gas at first but it works well for me.
Probiotics work for some. If you want to try them then get a good brand name with multiple strains of bacteria that is enteric coated so that the bacteria doesnt die in your stomach acid.
Probiotics work for some. If you want to try them then get a good brand name with multiple strains of bacteria that is enteric coated so that the bacteria doesnt die in your stomach acid.
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Take care... JillGreetings, Jen, and !
I really can't add much in light of the excellent info you have already received. Just wanted to let you know that I am one who also had a negative celiac blood test.............. but the stool test with Dr. Fine's lab was positive. And I am here to tell you that I am EXTREMELY sensitive to gluten. (Others here have had the same experience).
Also, I wanted to let you know that it WILL get better. Especially if you take charge of your own health and do those things that you feel will help you heal. (Many of us here got well despite our doctors, not because of them). If I hadn't found Dr. Fine and this website, I am certain that I would still be sick. I have been in remission now for almost 5 years, on diet alone. It may take a while, but you will get there. It took me 8 1/2 mo. after starting the diet to see my first formed B.M. However, you will notice an improvement in other symptoms much sooner - fatigue, aches and pains, mental fog, etc.
BTW, Asacol did nothing for me initially. If I were newly diagnosed today, I would probably opt to go gluten and dairy-free and take Entocort for some months. (Entocort was not available when I was first diagnosed, and I believe it would have helped me go into remission sooner). One of our members, Joanna, did Entocort and diet together and was able to stop the med. after 6 months and continue on diet alone. Joanna - please correct me if I have the facts wrong!!!
Anyway, please cheer up.
As you can see here, almost everyone is managing their MC to the extent that they are now living normal lives. And you will too. I have no doubt.
Love,
Polly
!I really can't add much in light of the excellent info you have already received. Just wanted to let you know that I am one who also had a negative celiac blood test.............. but the stool test with Dr. Fine's lab was positive. And I am here to tell you that I am EXTREMELY sensitive to gluten. (Others here have had the same experience).
Also, I wanted to let you know that it WILL get better. Especially if you take charge of your own health and do those things that you feel will help you heal. (Many of us here got well despite our doctors, not because of them). If I hadn't found Dr. Fine and this website, I am certain that I would still be sick. I have been in remission now for almost 5 years, on diet alone. It may take a while, but you will get there. It took me 8 1/2 mo. after starting the diet to see my first formed B.M. However, you will notice an improvement in other symptoms much sooner - fatigue, aches and pains, mental fog, etc.
BTW, Asacol did nothing for me initially. If I were newly diagnosed today, I would probably opt to go gluten and dairy-free and take Entocort for some months. (Entocort was not available when I was first diagnosed, and I believe it would have helped me go into remission sooner). One of our members, Joanna, did Entocort and diet together and was able to stop the med. after 6 months and continue on diet alone. Joanna - please correct me if I have the facts wrong!!!
Anyway, please cheer up.
As you can see here, almost everyone is managing their MC to the extent that they are now living normal lives. And you will too. I have no doubt.Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.