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.

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

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.

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

No worries. Should have been more clear.

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

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!

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.

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?

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.

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.

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

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.

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.

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

That is so depressing to hear about Entocort. I was really hoping to take it, and I'm not going near Prednisone. Did the company tell you that recently? I spoke to them about 2 months ago when they said they were beginnning to believe it was gluten-free but were not completely done with their investigation of it. Is there a generic yet that you know of?

I called 2 weeks ago. Trying to avoid another go round with the devil drug but...... I was a little shocked that a company doesn't know EXACTLY what is in there product!!!!

No generics yet. I wouldn't recommend generic drug for us Celiacs unless it's clearly stated as gluten-free.

It's absolutely evil for a drug company, prescription and OTC, not to know what's in their product. The FDA regulates them, so perhaps it's in our best interest to let the FDA know that we are unhappy with these types of answers:

1) We don't know if the product is gluten free.

2) We don't know if our suppliers ingredients are gluten-free because they change from time to time.

3) We'll have to call you back when we know (I got that one from a vitamin company and it's been about 3 weeks and I am still waiting; I call THEM every week. This company is Puritan's Pride. Never order again)

4) And I got this one recently (not verbatim): We are aware of a lot of food allergies. Many people are alleric to nuts and it's deadly (the Cust Ser rep. pretty much told me to count my blessings that the gluten sensitivity is not deadly like peanut allergy! Oh, and they can't put ALL ingredients that are sources of sensitivity on the label. This company was Fiber Choice chewable fiber tablets)

5) and this is the best one: We can't guarantee that cross contamination doesn't occur during the manufacturing process.

I also want to add that somebody needs to do something about all the clueless pharmacists out there. I'm sick of having to get all the information about the company that supplies the product, their number and address, etc., so I can make all the calls and await the responses about gluten in their meds. Why aren't the pharmacists being trained to do this? Shouldn't this be part of their job? I take a lot of meds so this is a constant annoyance for me. My local pharmacist has never heard of gluten and doesn't even know what it is, even though I've asked about at least 10 times now. They should at least know what this stuff means. I'm tired of doing these people's jobs for them.

I've always considered it my job to find out whether a product has gluten. I don't trust somebody else to do it.

Do you expect your grocer to know whether there's gluten in all the products he sells? If not, why would you expect the pharmacist to know? Remember that there's something like 100,000 medications on the market.

richard

I work in 2 pharmacies as a pharmacy technician. I would NEVER ask my pharmacist to do the footwork for me. They are WAY too busy and stressed to take time out of their day to sit on hold for 45 min with a drug company to find out ingredients.

It is sooo much easier for everyone involved if you find out the drug manufacturer and call them yourself. Then you aren't getting second hand information. You can also ask any questions you feel are necessary, and it's one less headache for a busy person who needs to do their job.

Just my 2 cents !

-Jessica

Sorry but a grocer is not the same to me as a pharmacist. I think it is lazy for a pharmacist to never have heard of the word gluten, that's just my opinion. I didn't mean any disrespect by it, but I'm getting tired of people who haven't heard the word gluten and haven't bothered to learn. If I'm the only one who feels this way, so be it.

Sorry, I too think it's the pharmacist's job to look up the info. I am sure that the PDR lists ingredients and every pharmacy has this book, or has access to it on line. Pharmacists are licensed and it's part of their job. I'd even compromise if the pharmacist or assistant would "assist" me by providing me with the drug company's toll free (or not toll free) phone number and I'll find out myself.
My pharmacist pulled this one on me, as he didn't know what gluten was and said he didn't have the generic drug company's phone number and couldn't help me. Well I "fired" that pharamacy that day and get my prescriptions elsewhere. If I can't turn to the pharmacy for help on their own prescription, then who can I turn to?

pturse-
back to your original thread, I was also put on Prednizone when I was first (very conclusively) dianosed. I was taking (I think) 20 a day, then tapered after a couple months. I had some mild side effects, but it made a dramatic improvement in my well being, I was able to keep food in me longer, instead of feeling like a hose.

I took myself off of it, and 11 months later, I feel way better than I have in years, but not all the way where I want to be. I was having frequent relapses, some traceable to contamination, others not. I went back on a very low dose (5 mg, once a day) and have felt no side affects, but also not as fragile.

I hate to say it, but I feel better. And I am very anti drug. My doctor explained it to me as the steroids reducing the inflamation enough for my body to be able to take over. I hope this different perspective is helpful

Lib

I didn't say the pharmacist shouldn't know what gluten means. But should the pharmacist know every single ingredient that MIGHT hide gluten? Do you really think the pharmacist is the one who should call the manufacturer? Not me. I want to hear what the manufacturer says, particularly since pharmaceutical companies are the worst about CYA statements. I don't want the pharmacist translating or interpreting for me, especially if he or she knows nothing about celiac.

As for looking it up in the PDR, that's all fine and dandy. My pharmacist does this for me any time I ask (actually he usually just puylls the insert for the medication). But that isn't much help when it says one of the ingredients is "starch."

If your pharmacist is refusing to help you in any way then you should definitely find a new one. At a minimum they should show you ingredients and help with phone numbers (although they truly do not always have a number for some of the generics). They should also have a notation in their system about your celiac disease. My main point was that I don't expect and don't want my pharmacist to be the one calling the manufacturer.

richard

Lib
Thank you for your response. I guess everyone is different in terms of reacting to certain drugs. If I could handle a small does such as 5mg then perhaps I my be interested in talking more with my doctor about it. I never like taking drugs. But I am seeking some relief. First I plan to try the scdiet . . . see what happens and then when I have to go back to my GI in about 1.5 months we'll talk.

I appreciate your honesty and response.

pturse

Hey everyone, thought I would give an up date. I have really been feeling awful lately for no apparent reason. I know I have not had any gluten intake and yet the cramping & "D" has become out of control some days. I actually had to stay home from work one day because of it and that has never happened. Before going gluten-free I never really had cramping problems just "D" and bloating. Lately, the cramping is terrible and the distenstion and bloating are way out of control.

My doctor said according to my last blood work, my Celiac is out of control. We may do a biopsy (it has been over a year since my last) to see if my villi is even responding at all to the diet because he said that I may be one of those few that the gluten-free diet just does not work. In which case, the next step is steriod like Prednizone. He is against going that far as am I.

So my question and toughts lately have been, if I am nonresponsive to the diet, i.e. my villi are not healing at all, then why remain on the diet? I am sticking with for the time being and waiting until I get a biopsy which will probably be in January but that is what is running through my head. I do not want to take steriods and have to deal with those side affects. The side affects of Celiac are fine enough right now. I honestly feel like I am getting worse and feeling worse compared to when I wasn't gluten-free. Some days are good and some days are bad but lately it seems like the bad are out weighing the good.

I can't keep track of what everybody's looked for so I'll just ask -- have you considered other intolerances and have you checked for bacterial overgrowth?

richard

Yes. I have checked for bacterial growth. There was none. As for other intolerances, I am lactose intolerant and already avoid dairy. What foods seem to bother me the most are vegetables. All vegetables. I do not eat meat so my options are limited.

First off, you sound so much like me.....

I was in your shoes not too long ago, thinking for sure that I had refractory celiac disease, as my system was just not responding to the g/f diet. Even when I was g/f, lactose free, sugar free, caffeine free, the diarrhea just continued to be uncontrollable.... It has literally been years since I have had a solid b.m....

My GI sent me to a celiac specialist here in Toronto. He did a colonoscopy and they found collagenous colitis. It is quite rare, so most GI's don't even consider it. Only 2 out of 100,000 people get it apparently. If they are doing another colonscopy on you, make sure you ask your GI to take several biopsies to test for collagenous colitis, which has to be identified by a special pathologist under the microscope. Collagenous colitis does not show up while doing a regular colonscopy as it can only be viewed through a microscope.

I have started the first treatment, and I am 4 weeks into the 8 week treatment. Unfortunately, there is absolutely no change. So it looks like the next step: steriods..... I go back to see him the beginning of January.

Good Luck!
Karen

Here is the link to the thread when I thought I had refractory celiac.....

I think you will find much of it very familiar to what you are going through.....

http://www.glutenfreeforum.com/index.php?s...t=0&#entry12899

Have a great day!
Karen

I think that, especially in your case, remaining on a gluten-free diet is more than necessary. By eating gluten, wont you be doing more damage to your already damaged intestines? And, since you do not heal, you would be doing irrepairable damage.

Btw, what is the SCDiet?