My GI recently told me that my villi damage is really bad. He gave me a few options one of which is following a super strict diet for the next four weeks followed by another endoscopy/colonoscopy.
He said if the diet is not working, as I have been on it since January, that I may have a severe form of Celiac where I am not responsive to the gluten-free diet and that steriods may be an option. He knows I am anti any type of drug so we are trying the super strict diet first to see what results if any I may get.
I was just curious if anyone has tried prednisone for celiac disease. I have had friends and relative take it for other reasons and I am not a fan of this drug. It does horrible things to your mind and body depending on the dosage.
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31 replies to this topic
#2
lovegrov
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Posted 28 October 2004 - 09:34 AM
Anybody who has celiac should be following a super-strict diet. It's really not a choice. Pay attention to cross-contamination issues. Resolve to eat simply -- meat and fresh fruit and vegetables.
Very, very few people actually end up with refractory sprue, which is what your doctor is talking about. Dr. Cynthia Rudert, one of the leading celiac doctors in the country, says refractory sprue is exceedingly rare. I'm not sure why you're doctor's being so negative and scaring you to death before you even start the diet. Virtually everybody who follows the diet heals completely.
My villi were so damaged they couldn't even find villi. As my GI said, the small bowel should look like a shag carpet. Mine looked like linoleum. You can't damage the villi any more than that. I was in such bad shape I was literally dying of malnutrition. 11 days in the hospital and 10 weeks off work. Yet I recovered completely.
While you should feel at least somewhat better in four weeks, IMO that simply is not enough time to tell whether or not you will heal completely. It's much too early to do another biopsy and it definitely is NOT enough time for the doctor just to give up and put you on prednisone. Some people take as long as 18 months to heal. I wasn't back to "normal" for about 10 months.
richard
Very, very few people actually end up with refractory sprue, which is what your doctor is talking about. Dr. Cynthia Rudert, one of the leading celiac doctors in the country, says refractory sprue is exceedingly rare. I'm not sure why you're doctor's being so negative and scaring you to death before you even start the diet. Virtually everybody who follows the diet heals completely.
My villi were so damaged they couldn't even find villi. As my GI said, the small bowel should look like a shag carpet. Mine looked like linoleum. You can't damage the villi any more than that. I was in such bad shape I was literally dying of malnutrition. 11 days in the hospital and 10 weeks off work. Yet I recovered completely.
While you should feel at least somewhat better in four weeks, IMO that simply is not enough time to tell whether or not you will heal completely. It's much too early to do another biopsy and it definitely is NOT enough time for the doctor just to give up and put you on prednisone. Some people take as long as 18 months to heal. I wasn't back to "normal" for about 10 months.
richard
#3
pturse
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Posted 28 October 2004 - 09:41 AM
No, I have been following the diet since January and have been watching the contamination however, there is always a "chance" what I thought was, wasn't.
But after being on the diet last year for 6 months as well, I did not feel ANY better whatsoever. It has been more then a year since my last biopsy, my recent GI said that my blood test levels for celiac were completely off the charts.
He hasn't scared me to death, but I was curious if any one out there has used prednisone and what reactions if any, did they get.
As for eating fruits, meats and vegetables . . . that is not an option. I am a vegetarian who can't have dairy and at this point, ALL vegetables, roughage & legumes flow through my system like water. I love them, but find myself limiting vegetables and fruit. Right now I am starting out on a rice only diet until I feel a little bit better. I also am an active person so I need my stomach to be settled for a run that I have this weekend.
Just to clarify, I was diagnosed over a year ago - went on the diet for about 5-6 months w/no relief. Got frustrated and went off it for about 2-3 months and then made a New Years Resolution to get back on it and stick w/it for good. It has been since January . . . no relief what so ever.
But after being on the diet last year for 6 months as well, I did not feel ANY better whatsoever. It has been more then a year since my last biopsy, my recent GI said that my blood test levels for celiac were completely off the charts.
He hasn't scared me to death, but I was curious if any one out there has used prednisone and what reactions if any, did they get.
As for eating fruits, meats and vegetables . . . that is not an option. I am a vegetarian who can't have dairy and at this point, ALL vegetables, roughage & legumes flow through my system like water. I love them, but find myself limiting vegetables and fruit. Right now I am starting out on a rice only diet until I feel a little bit better. I also am an active person so I need my stomach to be settled for a run that I have this weekend.
Just to clarify, I was diagnosed over a year ago - went on the diet for about 5-6 months w/no relief. Got frustrated and went off it for about 2-3 months and then made a New Years Resolution to get back on it and stick w/it for good. It has been since January . . . no relief what so ever.
#4
lovegrov
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Posted 28 October 2004 - 09:58 AM
Sorry, didn't remember your history and you didn't give it in your first post. Also when you mentioned being on a strict gluten-free diet for four weeks, I assumed that meant you had not been on a strict gluten-free diet.
richard
richard
#5
pturse
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Posted 28 October 2004 - 09:59 AM
No worries. Should have been more clear.
#6
debimashni
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Posted 28 October 2004 - 10:04 AM
I have been taking prednisone on an "as needed" basis for the flares I experience with Behcet's disease (I also take prograf daily and enbrel injections 2x/week. When I was diagnosed with celiac last spring, my biopsy showed "partially treated" celiac sprue, which I suspect was related to taking prednisone.
As for taking prednisone, it works awesome, but has terrible side effects. I take it only when I my Behcets flares are so bad I can't stand it anymore. I usually take 50mg x 3 days, or I'll do a 2 week taper. Last year I took it everyday and I gained 30 lbs (I finally have lost most of it), I had the "moon face", terrible mood swings, etc. It is such a tough decision, because my physical symptoms are so much better on prednisone, but mentally, it isn't worth it. If someone could develop a steriod without the side effects, it would be a gold mine!!!
If you have to take it, try to use the lowest dose possible. Some people get away with taking it every other day with minimal side effects. If you are put on it, and after you have some improvement, maybe you could get by with taking a short "blast of steriods" like I do, when your symptoms are bad.
You are welcome to email me if you have any questions.
Deb Mashni
As for taking prednisone, it works awesome, but has terrible side effects. I take it only when I my Behcets flares are so bad I can't stand it anymore. I usually take 50mg x 3 days, or I'll do a 2 week taper. Last year I took it everyday and I gained 30 lbs (I finally have lost most of it), I had the "moon face", terrible mood swings, etc. It is such a tough decision, because my physical symptoms are so much better on prednisone, but mentally, it isn't worth it. If someone could develop a steriod without the side effects, it would be a gold mine!!!
If you have to take it, try to use the lowest dose possible. Some people get away with taking it every other day with minimal side effects. If you are put on it, and after you have some improvement, maybe you could get by with taking a short "blast of steriods" like I do, when your symptoms are bad.
You are welcome to email me if you have any questions.
Deb Mashni
#7
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Posted 28 October 2004 - 12:55 PM
My situation sounds just like yours, though I am finally improving somewhat. I was gluten-free for 8 months when my antibodies showed no improvement, and I am the most strictly gluten-free person I know. No major gluten accidents, either. I was depressed and did not feel much better after sticking with this diet, and I was ready for steroids, too (my villi were also severly damaged and I was hospitalized at Mayo for 3 weeks.) In the end, I gave it some more time and double checked every item I ate, and did find some minor problems and removed them from my diet. I also had a colonoscopy, which showed I have colitis in addition to celiac disease. I started on a drug called Aciphex for gastritis, too, which improved the way I feel. My antibodies after 11 months gluten-free showed some major improvement, finally, and I do feel better in some ways though not perfect.
My advice would be give it more time, and then consider trying a less harmful steroid that is meant for the intestines specifically. It's called Entocort, aka Budesonide. I'm considering it myself, with one exception...it may or may not be gluten-free, the company doesn't know for sure, they are still researching it. I would take it before I took Pred., though!
My advice would be give it more time, and then consider trying a less harmful steroid that is meant for the intestines specifically. It's called Entocort, aka Budesonide. I'm considering it myself, with one exception...it may or may not be gluten-free, the company doesn't know for sure, they are still researching it. I would take it before I took Pred., though!
#8
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Posted 28 October 2004 - 02:27 PM
Hi pturse, I am sorry you are having a tough time and I hope you find som relief soon. I too have been strictly gluten-free for going on 14 months with little to no improvements. After going gluten-free I could tell a difference, mainly the (double-overing) abdominal pain was gone, but thats about it, still have diarrhea, cramps, weight loss, etc.
It is possible to have something else wrong in addition to Celiac, has your doctor ordered more tests / procedures? Or has mentioned the possiblity of something else? Also you may have a sensitivity to other foods, such as soy, yeast, etc.
As far as the Pred, I have been thinking the same thing myself, wondering if would help me feel better. Let us know how you are getting along, take care.
It is possible to have something else wrong in addition to Celiac, has your doctor ordered more tests / procedures? Or has mentioned the possiblity of something else? Also you may have a sensitivity to other foods, such as soy, yeast, etc.
As far as the Pred, I have been thinking the same thing myself, wondering if would help me feel better. Let us know how you are getting along, take care.
#9
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Posted 28 October 2004 - 04:37 PM
I really had no idea there are so many of us still not doing well...what's up with us anyway?! 
If anyone makes a choice about the steroids, let me know, I'd like to hear your experiences first hand. Also, what do you all think of taking Entocort even though it cannot be absolutley guaranteed as gluten-free yet? Worth taking a chance on it, or foolish to try if it's possibly not gluten-free?
If anyone makes a choice about the steroids, let me know, I'd like to hear your experiences first hand. Also, what do you all think of taking Entocort even though it cannot be absolutley guaranteed as gluten-free yet? Worth taking a chance on it, or foolish to try if it's possibly not gluten-free?
#10
pturse
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Posted 29 October 2004 - 08:20 AM
Thank you for everyone's responses & advice.
My doctor said that every celiac sufferer SHOULD feel better after being on the diet almost immediatly (as in 3 week or so). If they don't, that is an indication that something else is wrong or like many of you said, there may be other "allergies" involved.
I still have the abdominal cramping. I was even given a small dosage of a anti-depressant that was supposed to relax my muscles but it didn't work and only made "stuff" flow through my system faster. Needless to say, I am no longer on that.
I still have terrible D (actually that is all I have) it just depends on how many times a day I go. I am thinking of trying the SCDiet everyone was talking about in other boards but I am a vegetarian marathon runner and so making my own bread and eating rice are huge carbs that I feel like I need. I ordered the book and will read it first before I try anything. But at this point, running is impossible most days . . . I find myself running back home to use the facilities.
I have a feeling that it may be refractory sprue. I know it is rare but that is not to say it is impossible. So for the next four weeks I am going to do the rice diet for the most part to settle my stomach . . . however, I am not having a weight loss issue it is more of a gain issue some days. Which I guess is good but I don't really need to lose or gain any. I just hate that I crave food but then I feel sick after eating it, sometimes even rice. Sorry for venting. Just frustrated I guess.
I hope they develope a pill (or cure) for it sometime soon.
My doctor said that every celiac sufferer SHOULD feel better after being on the diet almost immediatly (as in 3 week or so). If they don't, that is an indication that something else is wrong or like many of you said, there may be other "allergies" involved.
I still have the abdominal cramping. I was even given a small dosage of a anti-depressant that was supposed to relax my muscles but it didn't work and only made "stuff" flow through my system faster. Needless to say, I am no longer on that.
I still have terrible D (actually that is all I have) it just depends on how many times a day I go. I am thinking of trying the SCDiet everyone was talking about in other boards but I am a vegetarian marathon runner and so making my own bread and eating rice are huge carbs that I feel like I need. I ordered the book and will read it first before I try anything. But at this point, running is impossible most days . . . I find myself running back home to use the facilities.
I have a feeling that it may be refractory sprue. I know it is rare but that is not to say it is impossible. So for the next four weeks I am going to do the rice diet for the most part to settle my stomach . . . however, I am not having a weight loss issue it is more of a gain issue some days. Which I guess is good but I don't really need to lose or gain any. I just hate that I crave food but then I feel sick after eating it, sometimes even rice. Sorry for venting. Just frustrated I guess.
I hope they develope a pill (or cure) for it sometime soon.
#11
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Posted 29 October 2004 - 11:43 AM
Have you ever had a colonoscopy yet, though? This sounds alot like Colitis or Crohn's, and those are far more common that RS. I thought I had RS too, until I found it was in fact colitis.
#12
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Posted 29 October 2004 - 01:47 PM
I agree with Gillian about it possibly being UC or Crohn's, my doctor is checking me for Crohn's again. He thinks the problem may be in my small instestines but not sure exactly what it is. We tried the antidepressant and it did not work at all. He has tried Flagyl in case it was a parasite now he has me on a new antibiotic that works only on the intestines, in case it's a bacterial thing going on.
I do hope you feel better soon! It's terrible to feel bad every day. I know for me I am down to eating the bare minium, no fruit, veggies, nuts or red meat. All of those make me cramp terribly, gives me gas and gives me a "yucky" feeling! so it's chicken, gluten-free breads, soup, etc. for me.
Take care
I do hope you feel better soon! It's terrible to feel bad every day. I know for me I am down to eating the bare minium, no fruit, veggies, nuts or red meat. All of those make me cramp terribly, gives me gas and gives me a "yucky" feeling!
so it's chicken, gluten-free breads, soup, etc. for me. Take care
#13
pturse
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Posted 29 October 2004 - 02:47 PM
Thank you again for your suggestions.
I had a terrible GI Dr. before the one I currently have. He was the one who had me do a colonoscopy and endoscopy . . . he said the results came back negative for the Crohns and such but now we are having a terrible time getting the medical records from him so that my current (and good) GI can see the test and the results.
I may be going for another colonscopy though in January. I know the villi damage seems only to be in the bottom half of my small intestines or so I was told.
I thought I had Crohns as well only because I know foods (especially those with seeds), such as tomatoes and cucumbers really bother me as well as peanuts, mushrooms and stuff.
So we will see. It is glad to know I am not alone in not feeling well. I have to learn to eat smaller quantities I guess too. Small portions are easier to digest and to as far from bedtime as possible. Those old habits are so hard to break but I am trying to find the will power. Halloween isn't helping matters.
I had a terrible GI Dr. before the one I currently have. He was the one who had me do a colonoscopy and endoscopy . . . he said the results came back negative for the Crohns and such but now we are having a terrible time getting the medical records from him so that my current (and good) GI can see the test and the results.
I may be going for another colonscopy though in January. I know the villi damage seems only to be in the bottom half of my small intestines or so I was told.
I thought I had Crohns as well only because I know foods (especially those with seeds), such as tomatoes and cucumbers really bother me as well as peanuts, mushrooms and stuff.
So we will see. It is glad to know I am not alone in not feeling well. I have to learn to eat smaller quantities I guess too. Small portions are easier to digest and to as far from bedtime as possible. Those old habits are so hard to break but I am trying to find the will power. Halloween isn't helping matters.
#14
debmidge
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Posted 30 October 2004 - 06:17 AM
pturse: Please keep us posted. My husband has same troubles ....I am beginning to think that in the same manner that doctors thought celiac was rare, that they say refractory sprue is rare. Surprise! celiac is not as rare as once thought and now I am beginning to believe tht refractory sprue isn't rare either.
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003
#15
SteveW
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Posted 30 October 2004 - 07:49 AM
Gillian
As you stated Entocort cannot guarantee that there product is gluten-free because sometimes there venders use Corn starch and sometimes WHEAT starch. I was told this by the company and so was my GI. I was told to stay off that drug.
pturse,
I currently taking a 20 day run at 10 mg of prednisone for Crohns( I also have Celiac)- and it does work. BUT its like making a deal with the devil. I helps a lot of symptoms but replaces them with many side effects. Also my experience is that it doesn't Cure anything-my GI problems have returned soon after tapering off both times I took it.
If you do end up on Prednisone make sure the bottle states its gluten-free. Roxane brand is gluten-free.
Steve
As you stated Entocort cannot guarantee that there product is gluten-free because sometimes there venders use Corn starch and sometimes WHEAT starch. I was told this by the company and so was my GI. I was told to stay off that drug.
pturse,
I currently taking a 20 day run at 10 mg of prednisone for Crohns( I also have Celiac)- and it does work. BUT its like making a deal with the devil. I helps a lot of symptoms but replaces them with many side effects. Also my experience is that it doesn't Cure anything-my GI problems have returned soon after tapering off both times I took it.
If you do end up on Prednisone make sure the bottle states its gluten-free. Roxane brand is gluten-free.
Steve
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