I forget Christi, Are you only eliminating gluten or have you tried to eliminate some of the other common food intolerances?
I'm also a horrible judge about drs at first meeting. Although I will say my GI gave me the creeps from the get go. Worse yet he told me that MC meant nothing while one of his collegues in the same office wrote a paper about MC.
Hang in there, you'll find an answer.
Katy
G.I. Appointment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Polly,
Sounds good to me...I didn't know about the phone consult..I'll try to set one up.
Hi Kate,
I've been gluten, diary,soy,egg and yeast free since April 28 and all grain free since May 31. This is my second round of entocort..20 days on 6mg and 21 days on 9mg. I'm doing everything I know to do for the LC. It would be great to talk to an expert like Dr. Fine to see if he can pick up on something I am missing or if some of my symptoms are not usual for MC.
Thanks again Ladies.
Love,
Cristi
Sounds good to me...I didn't know about the phone consult..I'll try to set one up.
Hi Kate,
I've been gluten, diary,soy,egg and yeast free since April 28 and all grain free since May 31. This is my second round of entocort..20 days on 6mg and 21 days on 9mg. I'm doing everything I know to do for the LC. It would be great to talk to an expert like Dr. Fine to see if he can pick up on something I am missing or if some of my symptoms are not usual for MC.
Thanks again Ladies.
Love,
Cristi
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annie oakley
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Carol Arnett
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I am so sorry you had to go through this episode with that JERK!!!! There are great docs out there and not all of them have a god complex. Thank God!!! Our daughter is and RN and when we got our new insurance and needed to find new docs that were in the system she went through the directory with us and marked out every name she didn`t want us to have anything to do with. Working in the ER, she saw plenty of JERKS. Best wishes, Carol
Carol Arnett
Christi,
I would still e-mail Enterolab with a chronology as succinct as you can state it. Have you read ALL the information on his website? Last time I took a peek at it, it was really loaded with answers to questions that people might have.
I know that one thing that was stated in my sisters 1 yr repeat of the fecal fat test which was still elevated was that pancreatic enzymes can a problem. She doesn't have the symptoms any more, however.
I've still not collected my specimen, and I'm right at three years gf this Thanksgiving. Just call me
Ole Slow Poke!
Seems like you mentioned something about pancreatic enzymes early on in your messages, didn't you? Perhaps you could mention that in your e-mail to Enterolab for Dr. Fine.
He has a nurse he hired a while back when his e-mails got to be so large, and he was working on his research and other things. She had been employed with an allergist for a number of years, so sort of understands lots of this immunology stuff pretty well. In my experience, since she's been there, if she can't answer my question, she'll take it directly to Dr. Fine.
One time, even since she started answering the easier questions, he wrote me himself.
I'm sure that after a while, you start to get the same questions over and over, and so that's why there's so much of these answers on the website, and also, how the nurse is more and more able to answer the more difficult questions as time goes on.
If you have more than one basic question, you could always start with the more basic one in the first e-mail, and then follow up with a second one in another. In my experience, it's better to just ask one question per e-mail.
Anyway, I would work on what you want to send to make it very clear and precise, and put it aside overnight or so, and reread it next day before sending it. I would imagine this would really help them as they must have to answer these at a pretty fast clip.
Oh, and a question I've been meaning to ask you -- didn't you mention something about using flax seeds?
Dr. Fine told the ones of us at his Dallas conference last March, that the seeds and nuts we can tolerate are a very individual thing.
He had been losing too much weight on his strict diet, so required seeds and nuts to maintain the wt.
For this reason, he had begun to rely on flax seeds, but had developed some aches and pains as a result, so had to stop using those particular ones, and just use those that didn't bother him.
Apparently, this is a trial and error thing to see which you feel best on.
He couldn't give any particular nuts or seeds that would be better or worse for everyone.
Sooo..this made me think that perhaps something like that could be bothering you.
Currently, what is the extent of your symptoms?
Yours, Luce
I would still e-mail Enterolab with a chronology as succinct as you can state it. Have you read ALL the information on his website? Last time I took a peek at it, it was really loaded with answers to questions that people might have.
I know that one thing that was stated in my sisters 1 yr repeat of the fecal fat test which was still elevated was that pancreatic enzymes can a problem. She doesn't have the symptoms any more, however.
I've still not collected my specimen, and I'm right at three years gf this Thanksgiving. Just call me
Ole Slow Poke!
Seems like you mentioned something about pancreatic enzymes early on in your messages, didn't you? Perhaps you could mention that in your e-mail to Enterolab for Dr. Fine.
He has a nurse he hired a while back when his e-mails got to be so large, and he was working on his research and other things. She had been employed with an allergist for a number of years, so sort of understands lots of this immunology stuff pretty well. In my experience, since she's been there, if she can't answer my question, she'll take it directly to Dr. Fine.
One time, even since she started answering the easier questions, he wrote me himself.
I'm sure that after a while, you start to get the same questions over and over, and so that's why there's so much of these answers on the website, and also, how the nurse is more and more able to answer the more difficult questions as time goes on.
If you have more than one basic question, you could always start with the more basic one in the first e-mail, and then follow up with a second one in another. In my experience, it's better to just ask one question per e-mail.
Anyway, I would work on what you want to send to make it very clear and precise, and put it aside overnight or so, and reread it next day before sending it. I would imagine this would really help them as they must have to answer these at a pretty fast clip.
Oh, and a question I've been meaning to ask you -- didn't you mention something about using flax seeds?
Dr. Fine told the ones of us at his Dallas conference last March, that the seeds and nuts we can tolerate are a very individual thing.
He had been losing too much weight on his strict diet, so required seeds and nuts to maintain the wt.
For this reason, he had begun to rely on flax seeds, but had developed some aches and pains as a result, so had to stop using those particular ones, and just use those that didn't bother him.
Apparently, this is a trial and error thing to see which you feel best on.
He couldn't give any particular nuts or seeds that would be better or worse for everyone.
Sooo..this made me think that perhaps something like that could be bothering you.
Currently, what is the extent of your symptoms?
Yours, Luce
Just a thought... are you taking all three entocort at the same time? I took mine separately.. morning... noon and night.. My thinking was that if stuff was running through me like water..taking all three at once was not going to work...
My GOOD GI doc who put me on entocort said I could take them any way I wanted to that worked for me...
I was devastated in the beginning when I was trying to find a decent GI doc when one told me (with my husband sitting in the room) that I needed a shrink to cure me and if I didn't see one he wouldn't see me again... well I chose to keep looking for a good doc and never went back..nor did I see a shrink...
grannyh
My GOOD GI doc who put me on entocort said I could take them any way I wanted to that worked for me...
I was devastated in the beginning when I was trying to find a decent GI doc when one told me (with my husband sitting in the room) that I needed a shrink to cure me and if I didn't see one he wouldn't see me again... well I chose to keep looking for a good doc and never went back..nor did I see a shrink...
grannyh
Hi Luce,
I had spoken with Dr. Fine's nurse a few months ago and she is helpful when you're new to eliminating gluten but that is the extent of it. After thinking about this overnight, It might be best to get advice someplace other than Dr. Fine as he is very invested in the gluten free diet cure...but I am already doing that and will continue to do that. Even if it hasen't helped my D, I feel less sick not eating it. There is a lot of research going on at Johns Hopkins as well and they will do a phone consult but only with your physician not the patient...which brings be back again to finding a GI in my area as I don't want my existing one talking on my behalf.
I have had some of the same symptoms as all of you, but some very different. On a couple of occasions early on I reacted to mainly soy and had lots of watery D. But mainly I have morning D,unformed but not watery...same thing every morning no matter what I eat. Never after noon...no matter what I eat.
The main problem is that I have lost 35 lbs. and am now just over 100 lbs. I must eat every couple of hours or I become very ill..don't faint but I get an urgent need to eat. When I eliminated grains it had no impact on the D ...I just stopped bloating as much and felt better without the gas pressure. And I guess from listening to all of you.....you seem to have reaction times and see a difference with diet, diet and meds, or just meds alone. Using my obnoxious GI's words..if I am only a zebra then I should be helped by the same thing you all have been helped by.
I find it intersting that the med that aerobics mama is on helps get rid of excess seratonon in the gut (which I have)...is this excess part of MC or is this a separate condition....this is why I want to speak with someone who knows more about MC than I do. But the first step is getting a new GI here.
Hi Grannyh
Thanks for the tip with the entocort...I'll try staggering the doses tomorrow. Isn't that the truth...they always play the "you must be unstable" card when they don't know the answer....which is why I don't want him talking to another doctor about me...he'll just tell him I'm nuts.
Thanks everyone for listening to me go on and on. I am sure my family would thank you if they realized how much you save them from having to listen to all of this.
Love, Cristi
I had spoken with Dr. Fine's nurse a few months ago and she is helpful when you're new to eliminating gluten but that is the extent of it. After thinking about this overnight, It might be best to get advice someplace other than Dr. Fine as he is very invested in the gluten free diet cure...but I am already doing that and will continue to do that. Even if it hasen't helped my D, I feel less sick not eating it. There is a lot of research going on at Johns Hopkins as well and they will do a phone consult but only with your physician not the patient...which brings be back again to finding a GI in my area as I don't want my existing one talking on my behalf.
I have had some of the same symptoms as all of you, but some very different. On a couple of occasions early on I reacted to mainly soy and had lots of watery D. But mainly I have morning D,unformed but not watery...same thing every morning no matter what I eat. Never after noon...no matter what I eat.
The main problem is that I have lost 35 lbs. and am now just over 100 lbs. I must eat every couple of hours or I become very ill..don't faint but I get an urgent need to eat. When I eliminated grains it had no impact on the D ...I just stopped bloating as much and felt better without the gas pressure. And I guess from listening to all of you.....you seem to have reaction times and see a difference with diet, diet and meds, or just meds alone. Using my obnoxious GI's words..if I am only a zebra then I should be helped by the same thing you all have been helped by.
I find it intersting that the med that aerobics mama is on helps get rid of excess seratonon in the gut (which I have)...is this excess part of MC or is this a separate condition....this is why I want to speak with someone who knows more about MC than I do. But the first step is getting a new GI here.
Hi Grannyh
Thanks for the tip with the entocort...I'll try staggering the doses tomorrow. Isn't that the truth...they always play the "you must be unstable" card when they don't know the answer....which is why I don't want him talking to another doctor about me...he'll just tell him I'm nuts.
Thanks everyone for listening to me go on and on. I am sure my family would thank you if they realized how much you save them from having to listen to all of this.
Love, Cristi
Even on entocort I still may have several trips to the john in the morning..with the first being quite normal and the next couple barely formed or not formed at all.. but it stops by 8 or 9 am.. I can live with that... beats having D all day with no warning and having to wear diapers!
I still take my entocort staggered even now that it seems to work..
grannyh
I still take my entocort staggered even now that it seems to work..
grannyh
Normans would be the perfect result.. but after what I have been through I am happy with what I have now.. sometimes I have just normans.. but mostly it is several times before 9 with only the first being a norman. Other people have had great results and perfect normans with diet alone.. I chose the drug route and have almost no dairy.. just danactive in the morning.. and very little gluten.. I eat fairly normally now. If the price of a normal diet is three trips to the john.. I can live with that:)
grannyh
grannyh
Cristi,
Have you tried eliminating corn for a few weeks to see what happens? When I continued to have problems after eliminating everything else, I found out about my corn intolerance. And then later my tomato/citrus intolerance.
Love,
Polly
Have you tried eliminating corn for a few weeks to see what happens? When I continued to have problems after eliminating everything else, I found out about my corn intolerance. And then later my tomato/citrus intolerance.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
I haven't been eating any of those. When I first came to the site I read Jean's post about the elimination diet so have kept it simple and limited in hopes of getting this under control easier. I eat chicken,pork,bacon.acorn squash, peas,carrots.applesause, cashew butter and salmon plus a few drops of cod liver oil. I've tried rotating in and out all these foods except the chicken. None of it seems to make a change in the how it comes out. Eliminating all my major intolerences made me feel less ill...but didn't impact the D.
On a better note, I asked Dr. Fine's nurse for GI suggestions in my area and she said she'd send me some names next week. Hopefully I'll find one of the good guys or gals.
Love,
Cristi
I haven't been eating any of those. When I first came to the site I read Jean's post about the elimination diet so have kept it simple and limited in hopes of getting this under control easier. I eat chicken,pork,bacon.acorn squash, peas,carrots.applesause, cashew butter and salmon plus a few drops of cod liver oil. I've tried rotating in and out all these foods except the chicken. None of it seems to make a change in the how it comes out. Eliminating all my major intolerences made me feel less ill...but didn't impact the D.
On a better note, I asked Dr. Fine's nurse for GI suggestions in my area and she said she'd send me some names next week. Hopefully I'll find one of the good guys or gals.
Love,
Cristi
Cristi,
I'm glad the nurse is sending you those recommendations. Dr. Fine would know all the top docs in the country for celiac and related diseases.
The fact that you don't feel sick verifies the antibody results. I can understand your wanting to go totally normal, however. I remember being sooo impatient with that.
The fact that you have the food reactions doesn't totally eliminate the possibility that you have something else going on additionally, so I'm glad you are staying on top of your situation like this. I've forgotten what all the tests you've had other than the colonosopy in the radiology area, but did anyone ever suggest doing any kind of scan or anything if you've had the upper tract scoped as well, with nothing observed?
Having something like that might help to ease your mind about something else possibly causing your symptoms.
Another thing perhaps we need to clarify is that I don't think that while you are still having unformed stools that the transit time would necessarily be all that easy to know, particularly if you have another allergen lerking somewhere.
My transit time became clear to me once things had cleared up a bit. The return of a short round of diarrhea was what alerted me to read the labels on what I'd eaten the day before. I really don't think the transit time is like clock-work until you've healed up a bit, although some may have the same transit time from the git-go.
As you know, there is much variation in the rate of diarrhea reduction and elimination, and a few people, no matter how strict with their diets, will have some problems now and again. It may just take more time.
Anyway, I hope that you can at least get some reassurance that you are going to be alright from the new GI, and that you really like whoever it is. Anxious to see what he (or she) will have up his sleeve.
Keep us posted. Glad you feel better, at least.
Yours, Luce
I'm glad the nurse is sending you those recommendations. Dr. Fine would know all the top docs in the country for celiac and related diseases.
The fact that you don't feel sick verifies the antibody results. I can understand your wanting to go totally normal, however. I remember being sooo impatient with that.
The fact that you have the food reactions doesn't totally eliminate the possibility that you have something else going on additionally, so I'm glad you are staying on top of your situation like this. I've forgotten what all the tests you've had other than the colonosopy in the radiology area, but did anyone ever suggest doing any kind of scan or anything if you've had the upper tract scoped as well, with nothing observed?
Having something like that might help to ease your mind about something else possibly causing your symptoms.
Another thing perhaps we need to clarify is that I don't think that while you are still having unformed stools that the transit time would necessarily be all that easy to know, particularly if you have another allergen lerking somewhere.
My transit time became clear to me once things had cleared up a bit. The return of a short round of diarrhea was what alerted me to read the labels on what I'd eaten the day before. I really don't think the transit time is like clock-work until you've healed up a bit, although some may have the same transit time from the git-go.
As you know, there is much variation in the rate of diarrhea reduction and elimination, and a few people, no matter how strict with their diets, will have some problems now and again. It may just take more time.
Anyway, I hope that you can at least get some reassurance that you are going to be alright from the new GI, and that you really like whoever it is. Anxious to see what he (or she) will have up his sleeve.
Keep us posted. Glad you feel better, at least.
Yours, Luce