Hey Cristi,
Thanks for the update. I'm very optomistic about this choice of medication/diet for you- don't be too disapointed about not seeing dramatic results yet. I found relief right off the bat but looking back I started Entocort/diet shortly after a round of Prednisone which may have set the stage in motion for my quick results. The good news is your not having negative side effects, like Barbara for example and like Wayne mentioned, Entocort is a cummulative drug so it may take more time with your system. I use to take it first thing in the morning followed by breakfast.
MC was my only issue to deal with and it certainly seems possible that your subclinical graves disease DX and/or hyperthyroidism could be complicating your entire situation. You have alot of your plate to deal with girlfriend!
When I started Entocort I went only GF, weaned off the med at 6 months and tweaked my diet towards Paleo within the next 4 months. Paleo is a very SAFE diet IMHO for folks with goofy systems like us. You have been GF for how long?
Do you have a good appetite? Can you eat avacados? I was going to echo Matthews suggestion on breakfasts of bacon and eggs...I see you can't do eggs!? He's made some other great suggestions. Hang in there and try to take in as many safe calories as you can.
Love,
Joanna
Entocort Update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Hi Matthew,Matthew wrote:Mike and Cristi
Was just wondering. I tried L-glutamine on and off for several years. As highly touted as it is to rebuild the tissue in the GI tract it gave me major problems every time I tried it . Since this is something you are both taking and apparently both still having problems I wonder if it might be a good idea to see what happens if you lay off it for a while.
I have found that a week is not really long enough to test if abstaining from something is going to help. A month is more like it for me.
Matthew
P.S. Almost all supplements are suspect for me. The further I got away from the better I felt.
Good question. For me most days I'm fine it's only every once in a while that I have problems and I have L-Glutamine every day. 5 grams. Oh and this is a recent thing that I added as I didn't do it for some time before, both ways I was about the same. I don't seem to have any issues with supplements, though at times I suspect them at first, usually turns out it's something else. I wonder if the Glutamine you had were Glutamine Peptides, I think the supplier I go through mentioned that the peptides had gluten or used gluten as part of the process of creating it. Their L-Glutamine was totally gluten free.
Oh and I agree on the info on eating. Taking time to eat the meal definitly helps in more ways than one. When I mindlessly eat I tend to feel worse afterward.
Thanks,
Mike
Hi Cristi,
I didn't take the medication route for the M.C., just dietary elimination, so it took me months of being off gluten to get to where you are today (the other intolerances were eliminated as I went along as well.).
If you keep avoiding your intolerances, I really believe that you will eventually get to a completely formed stool. How long have you been gf and gfdf now?
It's always two steps forward, one step back, or so it seems.
Could you possibly add more feedings to your day for the calories or have you already tried that? I would put a lot of stock into how my body felt, in general. If it's better, that may tell you that the overall inflammation is down as that's what happened in my case, particularly in the case of the gluten.
About the thyroid, before my goiter popped up, I had that same lump-like or congested feeling in my throat. Also, as goiters are coming on, it's not all that uncommon to have very rapid pulses. Be sure to keep your endo updated that all of this is going on.
I didn't begin GF until a little over a year after my thyroid was removed.
My endo doc has been extremely supportive of my discovery that I'm gluten and other things sensitive, but he was of the opinion that even if I'd begun the gf diet as soon as the thyroid disease was discovered, that the condition would've just cascaded from then on. In other words, he didn't think that at that late stage, I could've reversed it with diet. However, I personally believe that if I'd discovered the M.C. much earlier and started the diet then, that it may have been reversible. I have heard of people getting off kidney transplant lists by removing gluten, so I can't help but wonder?? Do you suppose anyone's even tried to reduce a goiter by gf dieting?
I once knew a lady many years ago whose pulse got soo fast with a big goiter that came up all of a sudden, that her doc prescribed Valium to slow it down if my memory serves me correctly.
Anyway, your endo would want to know about the racing pulse and continued feeling of a lump in your throat. Can you feel it when you palpate your neck? You might want to try that, and report anything you discover to him when you call about the other things.
Oh, and Cristi, since your heart rate is up, your whole metabolism is likely up related to the amount of thyroid hormone you are producing, so that could certainly be a major contributor to the wt. loss, another thing to report to the doc.
After my thyroid was totally removed, when my meds were being adjusted, I'd experience very rapid wt loss when the dosage was too high, and then, gain it back, when the blood work indicated that I needed a lower dose.
Best wishes to you.
Yours, Luce
I didn't take the medication route for the M.C., just dietary elimination, so it took me months of being off gluten to get to where you are today (the other intolerances were eliminated as I went along as well.).
If you keep avoiding your intolerances, I really believe that you will eventually get to a completely formed stool. How long have you been gf and gfdf now?
It's always two steps forward, one step back, or so it seems.
Could you possibly add more feedings to your day for the calories or have you already tried that? I would put a lot of stock into how my body felt, in general. If it's better, that may tell you that the overall inflammation is down as that's what happened in my case, particularly in the case of the gluten.
About the thyroid, before my goiter popped up, I had that same lump-like or congested feeling in my throat. Also, as goiters are coming on, it's not all that uncommon to have very rapid pulses. Be sure to keep your endo updated that all of this is going on.
I didn't begin GF until a little over a year after my thyroid was removed.
My endo doc has been extremely supportive of my discovery that I'm gluten and other things sensitive, but he was of the opinion that even if I'd begun the gf diet as soon as the thyroid disease was discovered, that the condition would've just cascaded from then on. In other words, he didn't think that at that late stage, I could've reversed it with diet. However, I personally believe that if I'd discovered the M.C. much earlier and started the diet then, that it may have been reversible. I have heard of people getting off kidney transplant lists by removing gluten, so I can't help but wonder?? Do you suppose anyone's even tried to reduce a goiter by gf dieting?
I once knew a lady many years ago whose pulse got soo fast with a big goiter that came up all of a sudden, that her doc prescribed Valium to slow it down if my memory serves me correctly.
Anyway, your endo would want to know about the racing pulse and continued feeling of a lump in your throat. Can you feel it when you palpate your neck? You might want to try that, and report anything you discover to him when you call about the other things.
Oh, and Cristi, since your heart rate is up, your whole metabolism is likely up related to the amount of thyroid hormone you are producing, so that could certainly be a major contributor to the wt. loss, another thing to report to the doc.
After my thyroid was totally removed, when my meds were being adjusted, I'd experience very rapid wt loss when the dosage was too high, and then, gain it back, when the blood work indicated that I needed a lower dose.
Best wishes to you.
Yours, Luce
Hi Joanna and Lucy,
Thanks ladies for your input. I went gluten free and other intolerence free April 28 so it's been 4 months (seems longer). I was eating a lot of rice the first month and was having problems with gas and bloating. Eliminating the rice helped a lot with those issues, but no noticable difference with the stools.
I upped my dose of entocort today since I am not having any noticable side effects. I was reluctant to do this in the beginning as I felt so awful on it the first time I took it....but as you guys pointed out ...it was probably the gluten making me ill then. So we'll see if the 9 mg will do the trick.
I still have a feeling that my thyroid is complicating my recovery. For the first 3 months after my surgery my TSH was very low and I was having muscle twitches in my arms and hands. It's gone up some since then and my hands and arms no longer move on their own, but I continue to have the throat lump, feel hungry, when I eat I feel like there is a heating pad on my back and I start sweating. I had an uptake test and my thyroid absorbed too much of the iodine in a uniform distribution...which is the pattern of Graves disease. I think this may be causing my metabolism to be too high making it hard to give my digestive system a break without losing weight. I don't know how it's affecting the D, but there is a possibility that it's not helping the situation.
I am feeling a bit better and stronger since going on entocort and getting off clonazapan. Thanks again for your support.
Love,
Cristi
Thanks ladies for your input. I went gluten free and other intolerence free April 28 so it's been 4 months (seems longer). I was eating a lot of rice the first month and was having problems with gas and bloating. Eliminating the rice helped a lot with those issues, but no noticable difference with the stools.
I upped my dose of entocort today since I am not having any noticable side effects. I was reluctant to do this in the beginning as I felt so awful on it the first time I took it....but as you guys pointed out ...it was probably the gluten making me ill then. So we'll see if the 9 mg will do the trick.
I still have a feeling that my thyroid is complicating my recovery. For the first 3 months after my surgery my TSH was very low and I was having muscle twitches in my arms and hands. It's gone up some since then and my hands and arms no longer move on their own, but I continue to have the throat lump, feel hungry, when I eat I feel like there is a heating pad on my back and I start sweating. I had an uptake test and my thyroid absorbed too much of the iodine in a uniform distribution...which is the pattern of Graves disease. I think this may be causing my metabolism to be too high making it hard to give my digestive system a break without losing weight. I don't know how it's affecting the D, but there is a possibility that it's not helping the situation.
I am feeling a bit better and stronger since going on entocort and getting off clonazapan. Thanks again for your support.
Love,
Cristi
Hi Everyone,
I had three rounds of D this morning. It was more orange in color making me wonder about the sweet potatoes I've been eating. My appointment with my doctor is next Tues. where I hope to get a perscription for my thyroid. I am praying this is the key to getting the D under control.
I am going to go on a short trip for the first time since my surgery. Our family is going to the San Juan Islands for a few days. I'm nervous but really excited too. I've got all my food planned and ready to go. We're supposed to have beautiful weather this week-end so I'm hoping for a few good days so I can enjoy our family time together. I hope you all have a safe, enjoyable Labor Day week-end.
Love,
Cristi
I had three rounds of D this morning. It was more orange in color making me wonder about the sweet potatoes I've been eating. My appointment with my doctor is next Tues. where I hope to get a perscription for my thyroid. I am praying this is the key to getting the D under control.
I am going to go on a short trip for the first time since my surgery. Our family is going to the San Juan Islands for a few days. I'm nervous but really excited too. I've got all my food planned and ready to go. We're supposed to have beautiful weather this week-end so I'm hoping for a few good days so I can enjoy our family time together. I hope you all have a safe, enjoyable Labor Day week-end.
Love,
Cristi
Cristi,
I hope you're able to enjoy your trip without any major problems. I was going to suggest that you take some immodium along, just in case, but I'll bet you're already planning to do that.
Love,
Tex
I hope you're able to enjoy your trip without any major problems. I was going to suggest that you take some immodium along, just in case, but I'll bet you're already planning to do that.
Love,
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.
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moremuscle
- Rockhopper Penguin
- Posts: 706
- Joined: Wed May 25, 2005 6:16 am
- Location: South Carolina
Hi Cristi,
I haven't time to read all the posts above but I have read the beginning of the thread. I read what you ate/eat.
When I started my paleo diet I still ate rice - you asked which grain we recommend if any - for me, rice is a grain I can tolerate; however, I no longer eat rice except on a rare occassion I will eat a little bit of rice.
If you don't do well with rice I would skip it along with all other grain regardless what the naturopath says. Like Wayne has said so many times before - we do not have a normal digestive system so what works for other "normal" people may not work well for us.
You mentioned "safe applesauce" - which brand is it? Is it really safe? Does it have asorbic acid or another type vitamin C added? Asorbic acid and citric acid are both off limits for me because of the corn intolerance - those vitamin C food additives are often corn derived even if it says on the label they are "naturally derived citric acid" - that's what it says on some of the Muir Glen tomato products for example. Check the apple sauce label again, OK!
I noticed Matthew cautioned you in regard to supplements. I am a big advocate for eliminating ALL SUPPLEMENTS from your diet until you've gained the control that you want - a formed stool.
The supplements have a LONG list of ingredients - many are hard to read and/or understand what they are and what they are made from - one of the good rules of thumb for a Paleo Dieter is to KEEP IT SIMPLE - eat basic foods, nothing else.
What kind of chicen broth are you using?
Are you using Imagine brand or Pacific brand?
Are you using Shelton brand?
Those are the only safe pre-made chicken broths I know of.
Cristi - I know all doctors and healthcare professionels recommend all kinds of supplements; so do the health food stores - they make a lot of money on supplements! We live in a supplement WORLD. Try to free yourself from the supplement world - you can always return to it when you are healthy if you still feel the need to get a supplement. It's an irony that it takes a supplement free diet to become healthy, isn't it? Think about it! Do you really need the supplements - or do you really need to do something else right now that may make you healthier? Eating real food that's packed with nutrients?
Loren Cordain recommends a paleo diet low in saturated fat but there are other paleo people who think fat is an integral part of your diet and should not be eliminated or reduced - read for example "Neanderthin" by Ray Audette. If you keep loosing weight you might need to rethink that part of your diet - at least for a while until you stabilize. Personally, I ate a lot of fat (steak for example) - including eggs - when I started the paleo diet. I eat less of it now but I don't cut much of my fat away when I eat meat. It satisfies hunger and it does have a function as a nutrient.
Love,
Karen
I haven't time to read all the posts above but I have read the beginning of the thread. I read what you ate/eat.
When I started my paleo diet I still ate rice - you asked which grain we recommend if any - for me, rice is a grain I can tolerate; however, I no longer eat rice except on a rare occassion I will eat a little bit of rice.
If you don't do well with rice I would skip it along with all other grain regardless what the naturopath says. Like Wayne has said so many times before - we do not have a normal digestive system so what works for other "normal" people may not work well for us.
You mentioned "safe applesauce" - which brand is it? Is it really safe? Does it have asorbic acid or another type vitamin C added? Asorbic acid and citric acid are both off limits for me because of the corn intolerance - those vitamin C food additives are often corn derived even if it says on the label they are "naturally derived citric acid" - that's what it says on some of the Muir Glen tomato products for example. Check the apple sauce label again, OK!
I noticed Matthew cautioned you in regard to supplements. I am a big advocate for eliminating ALL SUPPLEMENTS from your diet until you've gained the control that you want - a formed stool.
The supplements have a LONG list of ingredients - many are hard to read and/or understand what they are and what they are made from - one of the good rules of thumb for a Paleo Dieter is to KEEP IT SIMPLE - eat basic foods, nothing else.
What kind of chicen broth are you using?
Are you using Imagine brand or Pacific brand?
Are you using Shelton brand?
Those are the only safe pre-made chicken broths I know of.
Cristi - I know all doctors and healthcare professionels recommend all kinds of supplements; so do the health food stores - they make a lot of money on supplements! We live in a supplement WORLD. Try to free yourself from the supplement world - you can always return to it when you are healthy if you still feel the need to get a supplement. It's an irony that it takes a supplement free diet to become healthy, isn't it? Think about it! Do you really need the supplements - or do you really need to do something else right now that may make you healthier? Eating real food that's packed with nutrients?
Loren Cordain recommends a paleo diet low in saturated fat but there are other paleo people who think fat is an integral part of your diet and should not be eliminated or reduced - read for example "Neanderthin" by Ray Audette. If you keep loosing weight you might need to rethink that part of your diet - at least for a while until you stabilize. Personally, I ate a lot of fat (steak for example) - including eggs - when I started the paleo diet. I eat less of it now but I don't cut much of my fat away when I eat meat. It satisfies hunger and it does have a function as a nutrient.
Love,
Karen
Inspired by the paleolithic diet and lifestyle -
living w/o gluten, dairy, soy, corn, and yeast.
living w/o gluten, dairy, soy, corn, and yeast.
Hi Karen,
The name of the applesauce is solana gold and under ingredients it lists only apples. the chicken stock I use is the one I make from the SCD recipe....chicken,water,carrots and parsley. You guys have been extremely helpful and clear about the foods I should eat and not eat and I am lucky to have a Whole foods close to me. Believe me, I am not even tempted to cheat...I hate being sick. I am still hopeful that the entocort will kick in...at the same time I can see that for a lot of people the diet works and for others the medicine works and I am combining both and am not getting results yet which makes me wonder if something else is complicating my recovery. So while not giving up on the diet or the entocort, I am going to see if other things are involved...like my thyroid which can cause D in some people as well.
I hear you about the supplements...it does seem prudent that I should wait until the D is gone to try those. Of course if the D goes away I don't think I would try anything new as I wouldn't want to rock the boat.
Thanks Grannyh...I am hopeful the entocort will kick in soon.
Hey Tex....the immodium is packed along with lots of TP. I'll just deal and hopefully I won't have any embarassing tales to tell when I get back.
Thanks everyone.
Love,
Cristi
The name of the applesauce is solana gold and under ingredients it lists only apples. the chicken stock I use is the one I make from the SCD recipe....chicken,water,carrots and parsley. You guys have been extremely helpful and clear about the foods I should eat and not eat and I am lucky to have a Whole foods close to me. Believe me, I am not even tempted to cheat...I hate being sick. I am still hopeful that the entocort will kick in...at the same time I can see that for a lot of people the diet works and for others the medicine works and I am combining both and am not getting results yet which makes me wonder if something else is complicating my recovery. So while not giving up on the diet or the entocort, I am going to see if other things are involved...like my thyroid which can cause D in some people as well.
I hear you about the supplements...it does seem prudent that I should wait until the D is gone to try those. Of course if the D goes away I don't think I would try anything new as I wouldn't want to rock the boat.
Thanks Grannyh...I am hopeful the entocort will kick in soon.
Hey Tex....the immodium is packed along with lots of TP. I'll just deal and hopefully I won't have any embarassing tales to tell when I get back.
Thanks everyone.
Love,
Cristi
Cristi,
I think you'll do fine. Remember, if all else fails, when one has to be out and about, Depends, (or a reasonable facsimile), have saved the day for some of us. They're better than a security blanket.
Love,
Tex
I think you'll do fine. Remember, if all else fails, when one has to be out and about, Depends, (or a reasonable facsimile), have saved the day for some of us. They're better than a security blanket.
Love,
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.
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bobh
- Gentoo Penguin
- Posts: 253
- Joined: Wed Aug 09, 2006 10:07 am
- Location: California, San Luis Obispo (coast)
Cristi, as I understand it, the Entocort is not working - or taking a long time to see results.
For what it's worth, I saw my MD today and asked to be put on Entocort. I was really surprised when he recommended STARTING with Prednisone (in order to HALT the body's inflammatory condition).
I see that Joanna followed a similar sequence, and got good results per her comment:
Then you do 20mg Prednisone AND begin to introduce the Entocort, they are 3 mg pills, take 2 of those a day (so you are taking the 2 drugs simultaneously, and you do that for 2 days).
Then 10mg Prednisone for 2 more days, while maintaining the Entocort at the 2 pills a day.
Now you are only taking Entocort, 2 pills a day, up to 3 pills a day as needed to STOP THE D.
Once I get my issues resolved, I will do a post on my journey through medico-ville. After 15 years of suffering and trying various diets, I had approached my MD 2 weeks ago to get meds. He started me on Asacol, although I had brought in a write up stating that Asacol would help to extend a remission, but not stop a "flare-up". I had been on a non-stop flare-up for 6 months. He didn't want to write a script for anything stronger than Asacol until we saw how it did by itself.
The Asacol "sort of" helped after a few days - but I think it may have been the immodium + Pepto-Bismal + charcoal I was taking to try and stop the flare. I have read that it can take 3 weeks for Asacol to work, and it's only been 2 - but my D has been so bad I cannot work.
When I saw the MD today, I made it clear that my D had been flaring away, and this is what he wanted to do, Prednisone/Entocort WHILE MAINTAINING ASACOL. Once the D has been beaten down to a stable condition, we will try just Asacol alone, as a long term drug with Entocort for flare-ups as needed.
I will let you know if it works for me. My MD said that if you don't take the Prednisone to start out, it can take a LONG time, and is less certain of a result. He stated that you don't stay on the Prednisone long enough for it's side-effects to be an issue.
For what it's worth, I saw my MD today and asked to be put on Entocort. I was really surprised when he recommended STARTING with Prednisone (in order to HALT the body's inflammatory condition).
I see that Joanna followed a similar sequence, and got good results per her comment:
Today my MD wrote a script for 10mg pills of Prednisone (42 pills). He said to take 6 of them in the morning after a large breakfast = 60mg. Do that for 2 days. Then 50mg for 2 more days. Then 40mg for 2 more days. Then 30mg for 2 more days. (I remain on Asocal during this whole time).Joanna wrote:I started Entocort/diet shortly after a round of Prednisone which may have set the stage in motion for my quick results.
Then you do 20mg Prednisone AND begin to introduce the Entocort, they are 3 mg pills, take 2 of those a day (so you are taking the 2 drugs simultaneously, and you do that for 2 days).
Then 10mg Prednisone for 2 more days, while maintaining the Entocort at the 2 pills a day.
Now you are only taking Entocort, 2 pills a day, up to 3 pills a day as needed to STOP THE D.
Once I get my issues resolved, I will do a post on my journey through medico-ville. After 15 years of suffering and trying various diets, I had approached my MD 2 weeks ago to get meds. He started me on Asacol, although I had brought in a write up stating that Asacol would help to extend a remission, but not stop a "flare-up". I had been on a non-stop flare-up for 6 months. He didn't want to write a script for anything stronger than Asacol until we saw how it did by itself.
The Asacol "sort of" helped after a few days - but I think it may have been the immodium + Pepto-Bismal + charcoal I was taking to try and stop the flare. I have read that it can take 3 weeks for Asacol to work, and it's only been 2 - but my D has been so bad I cannot work.
When I saw the MD today, I made it clear that my D had been flaring away, and this is what he wanted to do, Prednisone/Entocort WHILE MAINTAINING ASACOL. Once the D has been beaten down to a stable condition, we will try just Asacol alone, as a long term drug with Entocort for flare-ups as needed.
I will let you know if it works for me. My MD said that if you don't take the Prednisone to start out, it can take a LONG time, and is less certain of a result. He stated that you don't stay on the Prednisone long enough for it's side-effects to be an issue.
Bob H
Hi Cristi,
I was just going to make the comment that Bob mentioned last --you would probably just be on the Prednisone a short time, like Joanna. I think it's the folks who are prescribed it for long periods of time who seem to have the most difficulty.
Main thing is to follow your doc's gradual tapering of dosage prescription to the letter. Stopping any steroid more quickly could kill you, and has often done so.
Yours, Luce
I was just going to make the comment that Bob mentioned last --you would probably just be on the Prednisone a short time, like Joanna. I think it's the folks who are prescribed it for long periods of time who seem to have the most difficulty.
Main thing is to follow your doc's gradual tapering of dosage prescription to the letter. Stopping any steroid more quickly could kill you, and has often done so.
Yours, Luce