Well, I haven't been on much lately--just too much going on with kids and swim team and homework and piano and soccer and company and my husband taking over the district! The good news is that I finally have a few minutes to check in on things.
Earlier this week I went to see Dr. Scott Lewey, who is a GI in Colorado Springs who specializes in celiac, gluten intolerance, etc. He knows Dr. Fine from Enterolab and fully supports his research and testing, he is active on the celiac.com website, and has his own website www.thefooddoc.com. He spent almost an hour and a half with me! What I loved is that I felt like he really appreciated having a patient who had done her homework, asked informed questions and really "gets it" all. We spent a fair amount of time talking about the research that has been done on gluten sensitivity and the links between mc and gluten and the mainstream medical community that still has to catch up...it was very interesting talking to him.
So, he believes that despite my negative blood work and my screwed up biopsy, he still thinks I have active celiac disease--double genetic factor, positive dietary response and the lymphocytic colitis all add up. He also told me that in relation to the lc, the very high number of lymphocytes per 100 cells is so high (50 per 100) put me at risk of developing lymphatic cancer. He firmly believes that if I continued to eat gluten I would be putting myself at an even greater risk of developing it.
So the plan is to continue the gluten free diet, but he also put me on predisone for 3 weeks and then I'll start entocort. I have noticed a huge difference in the way I feel being off gluten--except for Norman--no changes there, so I guess medication is the way to heal the gut and the gluten free will hopefully keep things under control from there.
Any thoughts from those of you who have been on/are on entocort? Anything to watch out for? Side effects? How long should I expect to be on it? Just curious what other people's experiences have been. I sure appreciate your input!
Thanks,
Wendy
Starting Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wendy, Wow...your doc is amazing! I am not GF, but have been taking Entocort for several years. At my best, I was taking one capsule every 3 days. That worked well until job stress threw me into a major flare...I am currently taking 2 caps/day. I love Entocort...no side effects. Good luck kiddo...JJ
Hi Wendy!
I've been on Entocort for 2 years.. Started out with the normal dosage of 3 - 3mgs, in the morning, a day.. The side effects that I noticed at that dosage was I would bruise easily and get leg and feet cramps. After 6 weeks I started weaning myself down to 2 a day and continued that dose for 4 weeks. Then I went to 1 a day and that's where I am at and it is controlling any symptoms. When I saw my GI in March he stated that I should not have any problems with the lowest dosage and staying on it for maintenance. Sure beats making dashes to the bathroom 20-30 times a day!!!!
I've never taken Pred and have no desire to so I can't relate as far as side effects from it.
I continue to be GF/CF and can tell when I get the least bit of dairy.
Hope this info helps!!
Dee
I've been on Entocort for 2 years.. Started out with the normal dosage of 3 - 3mgs, in the morning, a day.. The side effects that I noticed at that dosage was I would bruise easily and get leg and feet cramps. After 6 weeks I started weaning myself down to 2 a day and continued that dose for 4 weeks. Then I went to 1 a day and that's where I am at and it is controlling any symptoms. When I saw my GI in March he stated that I should not have any problems with the lowest dosage and staying on it for maintenance. Sure beats making dashes to the bathroom 20-30 times a day!!!!
I've never taken Pred and have no desire to so I can't relate as far as side effects from it.
I continue to be GF/CF and can tell when I get the least bit of dairy.
Hope this info helps!!
Dee
Hi Wendy,
You are being treated by arguably one of the top three celiac/lMS doctors in this country. Good for you. That's a fairly long initial period to be on Prednisone, (possibly long enough to develop a dependency), but I'm sure that Dr. Lewey knows a heck of a lot more about the drug than I do, so I have no problem with that plan.
It's my understanding that celiacs who diligently follow the GF diet, have no higher risk of developing lymphoma, than the general population, after a few years on the diet. I hope he hasn't uncovered recent research that contradicts that conclusion.
I'll leave the comments on the effects of Entocort to those who have actually used it, since I have never taken it. You're doing everything right, as far as I can tell, and success will surely be yours.
Best of luck with the treatment program.
Wayne
You are being treated by arguably one of the top three celiac/lMS doctors in this country. Good for you. That's a fairly long initial period to be on Prednisone, (possibly long enough to develop a dependency), but I'm sure that Dr. Lewey knows a heck of a lot more about the drug than I do, so I have no problem with that plan.
It's my understanding that celiacs who diligently follow the GF diet, have no higher risk of developing lymphoma, than the general population, after a few years on the diet. I hope he hasn't uncovered recent research that contradicts that conclusion.
I'll leave the comments on the effects of Entocort to those who have actually used it, since I have never taken it. You're doing everything right, as far as I can tell, and success will surely be yours.
Best of luck with the treatment program.
Wayne
Thank you, thank you--I can't tell you how nice it is to have support from you on this board. It's great to find a real doctor who knows his stuff, but it's another thing to be able to talk to people who are living what I am going through.
Should I be worried about the length of time on the predisone? It's 2 pills/day for 2 weeks, then 1 a day for 1 week. How would I know if I'm becoming dependent on it?
BTW, Tex, how are you feeling? I've been catching up on the other posts this morning and I see you're on some new meds. Hope it's helping!
Wendy
Should I be worried about the length of time on the predisone? It's 2 pills/day for 2 weeks, then 1 a day for 1 week. How would I know if I'm becoming dependent on it?
BTW, Tex, how are you feeling? I've been catching up on the other posts this morning and I see you're on some new meds. Hope it's helping!
Wendy
Hi Wendy,
I wouldn't worry about dependence for that short a period of time. And Wayne is right about Dr. Lewey. I wish I could have him for my doc. We have written emails back and forth and he is such a knowledgeable and compassionate person. Lucky you! Good luck and keep us posted.
Love,
Polly
I wouldn't worry about dependence for that short a period of time. And Wayne is right about Dr. Lewey. I wish I could have him for my doc. We have written emails back and forth and he is such a knowledgeable and compassionate person. Lucky you! Good luck and keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Wendy,
That's a pretty low dosage rate. There shouldn't be any risk of a dependency at that rate. You would have to take it for a much longer period of time, at that rate, before there was any risk involved. Besides, I would completely trust Dr. Lewey's judgment on that - he knows his stuff.
As far as being able to detect the presence of a developing dependency, I doubt that you would be able to recognize any warning signs, until you tried to stop using it, and then it's too late, of course. Please don't worry, you should be safe at that rate, for that length of treatment. The people on this board who had bad experiences with prednisolone, took it for years, or else had a short-term overdose. You won't be anywhere close to either of those situations.
I'm feeling great. I was feeling OK before, but I think the thyroid hormone supplement will resolve some issues which were beginning to develop, over the past couple of years, and prevent them from getting out of hand.
Thanks for asking.
Tex
P S Oops, I see that Polly posted, and answered your question, while I was writing my response. Since we're obviously in agreement, though, I won't bother to change my response.
That's a pretty low dosage rate. There shouldn't be any risk of a dependency at that rate. You would have to take it for a much longer period of time, at that rate, before there was any risk involved. Besides, I would completely trust Dr. Lewey's judgment on that - he knows his stuff.
As far as being able to detect the presence of a developing dependency, I doubt that you would be able to recognize any warning signs, until you tried to stop using it, and then it's too late, of course. Please don't worry, you should be safe at that rate, for that length of treatment. The people on this board who had bad experiences with prednisolone, took it for years, or else had a short-term overdose. You won't be anywhere close to either of those situations.
I'm feeling great. I was feeling OK before, but I think the thyroid hormone supplement will resolve some issues which were beginning to develop, over the past couple of years, and prevent them from getting out of hand.
Thanks for asking.
Tex
P S Oops, I see that Polly posted, and answered your question, while I was writing my response. Since we're obviously in agreement, though, I won't bother to change my response.
I have been on Entocort for over two years. I have never been able to reduce from 3 a day. It has given me my life back!
After having a major problem with steroids last year.. I refuse to take prednisone again... ever...
Hope you get the same relief from Entocort as some of us have had. I sure don't miss wearing diapers one bit:)
grannyh
After having a major problem with steroids last year.. I refuse to take prednisone again... ever...
Hope you get the same relief from Entocort as some of us have had. I sure don't miss wearing diapers one bit:)
grannyh
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Re: Starting Entocort
Wendy, you lucky lady!
You are in such great hands and good consult with Dr. Lewey.
I took Pred for 2 months with no problems really, although towards the very end of the 2 month period I seemed to develop sort of a moon face which concerned me but that was at the time I weaned off it. It halted all symptoms of MC that I had lived with for more than a year and gave me a life back to face the future.
Right after that, took Entocort for 6 months and adopted a GF diet . Had no problem with either drug and know, in my experience is that drugs are not a bad thing to bring us around but in the long run, diet is the answer.
Love,
Joanna
You are in such great hands and good consult with Dr. Lewey.
I took Pred for 2 months with no problems really, although towards the very end of the 2 month period I seemed to develop sort of a moon face which concerned me but that was at the time I weaned off it. It halted all symptoms of MC that I had lived with for more than a year and gave me a life back to face the future.
Right after that, took Entocort for 6 months and adopted a GF diet . Had no problem with either drug and know, in my experience is that drugs are not a bad thing to bring us around but in the long run, diet is the answer.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
I, indeed, am very lucky to live so close to where Dr. Lewey practices. I was thrilled to find him and will pay out of pocket to see him as long as I need to (hopefully won't be too long--they say by the summer they should take Tricare).
He spoke a lot of the gluten "iceberg"--that full-blown celiac is merely the tip and the range of people with gluten sensitivity is mostly still under the water. He did say that Dr. Fasano of the U of Maryland is slowly coming around to this idea as well, but that it's taken a long time.
He also spoke of having met with Dr. Fine and discussing why he hasn't published yet. It appears as though Dr. Fine is collecting as much data as he possibly can, trying to get an accurate population sample before he publishes. Naturally, because of his clientele, the results are likely to be skewed toward what he is researching. After all, how many people are going to use these tests if they do not suspect gluten issues? Dr. Lewey talked of that also in his own practice--that he had to talk to his pathologist about the high number of celiac patients that he has, simply due to the fact that he has patients from all over the place to come to see him specifically because of his specialty.
So I'm hoping that the Entocort will help relieve the symptoms and heal the intestine--as it seems that it has for many of you--and then the gluten free will help sustain that. I'll keep you posted!
Thanks for the great responses!
Wendy
He spoke a lot of the gluten "iceberg"--that full-blown celiac is merely the tip and the range of people with gluten sensitivity is mostly still under the water. He did say that Dr. Fasano of the U of Maryland is slowly coming around to this idea as well, but that it's taken a long time.
He also spoke of having met with Dr. Fine and discussing why he hasn't published yet. It appears as though Dr. Fine is collecting as much data as he possibly can, trying to get an accurate population sample before he publishes. Naturally, because of his clientele, the results are likely to be skewed toward what he is researching. After all, how many people are going to use these tests if they do not suspect gluten issues? Dr. Lewey talked of that also in his own practice--that he had to talk to his pathologist about the high number of celiac patients that he has, simply due to the fact that he has patients from all over the place to come to see him specifically because of his specialty.
So I'm hoping that the Entocort will help relieve the symptoms and heal the intestine--as it seems that it has for many of you--and then the gluten free will help sustain that. I'll keep you posted!
Thanks for the great responses!
Wendy
I loved the Entocort they gave me! I was on it for 6 months (4.5 months at the 3 pills a day then decreased from there). The only side effects I got were being anxious and figity, some light leg and feet cramps, and lots and lots of relief!!!!!!!!!!!!!!!!!!!!!
Sounds like your doc is awesome. I wish I had a top 3 GI in MC and celiac disease.
Be aware that the Entocort took a good 2.5-3 weeks to start working. I almost gave up on it and went to pred; glad I didnt.
Sounds like your doc is awesome. I wish I had a top 3 GI in MC and celiac disease.
Be aware that the Entocort took a good 2.5-3 weeks to start working. I almost gave up on it and went to pred; glad I didnt.
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!