[Karrin]

I was diagnosed with celiac sprue back in June and felt some relief after switching to the diet (yes I am very strict and I have ruled out CC's/other allergies). Many symptoms never went away completely - only sort of fade in and out -, and about September all my symptoms started coming back with a vengeance - minus the constipation and trapped gas which were the worst of most my celiac problems. I had a positive test for RA, but on top of the debilitating weakness and fatigue I was still getting rashes on my face, hair was falling out, reynaulds, brain fog, and I was passing undigested food, nausea, short of breath...etc.

I recently started predisone and I have never felt better. Minus a slight bit of insomnia I feel absolutely amazing. I have a lot of my energy back, my reynaulds is gone, joint pain and swelling is gone, no more brain fog, and my stools are returning to normal. My skin is also 'young' again. I just turned 27, but when I'd get sick I got large backs under my eyes, the rash and even the texture of my skin looked old.

Except for celiac sprue, my blood tests are always negative for other autoimmune, thyroid etc diseases. I was wondering if anyone else here has had this problem? Anyone with refractory sprue? Or lupus? I can't find much info on refractory sprue, but I think it might explain some of my digestive issues that only now are clearing up with the prednisone. Can lupus cause digestive issues too?

[Imanistj]

I'm a retired RN and earlier this year, before I got a "sort of" diagnosis of celiac disease, I was put on prednisone for a while. I did feel really well, but I was very afraid I might receive a diagnosis that would require me to take this med frequently. It may be tempting to consider taking prednisone long term, but the med is a double-edged sword. It has numerous side effects and some may actually be life threatening. Prednisone is a steroid and a very complicated medication. You should have received information from the drug store when you filled the prescription. This is a medication that should never be abruptly discontinued. Google the side effects of prednisone and pay attention. A good doctor will write instructions that are intended to appear on the label of the medication vial. They will warn of side effects and explain how to taper off the med. I was prescribed prednisone by a fibromyalgia specialist and he didn't specify any schedule for tapering. He just said to take it for 7 to 10 and let him know how I felt at the next appointment. When I saw him again I told him the med worked well and I told him I had tapered myself off the dose. I next received, from this doctor, a diagnosis of autoimmune liver disease and I was terrified because steroids are about the only thing that calms the liver disease. I worried terribly that I might have to take it often. Fortunately, I went to a liver specialist and he said my liver is fine and the positive test is a "marker" and for now I don't have a problem, except that I have celiac disease! If there is anything good about this diagnosis it is that I can keep my body healthy by diet and I don't need any steroids. Well, maybe that is good. I absolutely HATE giving up gluten containing baked goods!!!!! I'm still adjusting to the very real loss of my favorite foods and I am so picky I haven't found any substitutes that I really like. I can always taste and feel the difference. Thank you for making me realize I really could have a worse problem. Take your prednisone as directed, be certain your doctor tells you how to discontinue it, and really study the internet for information about the side effects of prolonged use of prednisone.

[Wolicki]

I was wrongly diagnosed with Lupus 10 years ago. Turned out it was Celiac all along. Prednison became my best friend, as long as I didnt take it longer than 5 days. It took away all my pain when it was bad. But i agree with Nancy, its a bad drug when not used very judiciously. Always taper off, and only take it when you absolutely have to.

[Karrin]

I understand it is no ones intention to frighten me off this medication, but to educate. However, I do think anyone stumbling upon this thread that is not feeling any relief from the diet alone might read this and freak. I know I did after stumbling on some older threads on this site regarding prednisone. We read the side effects and think the worst. We think, oh no, do I want to take such a powerful medicine for life and how will it effect me?

Until recently (like celiac disease) I had no awareness of refractory sprue, which does not clear up with the diet alone. If you think celiac disease is unheard of try getting answers on refractory sprue! Many of us also suffer with other serious autoimmune diseases that go undetected by blood tests alone. For us prednisone is a godsend and worth a look into. I was terrified of the idea of taking it before, but it has already changed my life 180. The worst side effects I have experienced thus far are a bit of sleeplessness now and then (even then I have energy to spare the next day) and a slight increase in appetite in the beginning, which has tapered off and is easily controlled by eating healthily - not hard to do when you're already on a gluten free diet. Everyone's body is different and not everyone reacts to medication the exact same way.

Prednisone isn't and shouldn't be a forever thing, it is only taken to control flares.

I can assure everyone that I would not, nor would my doctor - a man I trust implicitly after years of bad doctors - be taking this drug lightly. Nor am I cheating on my diet in any way, or should anyone use this as a cheat with celiac sprue - I simply was receiving very sporadic relief from the diet at first and the last 3 months + not at all. I am aware of the possible side effects and dangers of abruptly stopping - as should EVERYONE who takes this drug! Make sure you trust your doctor and have a good rapport. Consequences or none, I personally refuse to live out my life from bed anymore. Honestly, even the worst side effects are NOT guaranteed for everyone, but even if I get every last one I do not care at this point. If it buys me even a year of a real life, even at half the energy of a normal, healthy person I will be happy.

I pray this medicine isn't one I will have to take for life, of course, but probably will at the very least on and off to control flare ups due to my RA and whatever this other condition is that is making me so ill/weak. My bones grind together painfully in my wrists and knee and I'm terribly sorry I waited so long to begin the prednisone. I could have prevented some serious joint damage that I now have to live with. But for celiacs who do not receive any relief from the diet alone and have ruled out CC, allergies etc, I think living with the continuing symptoms of celiac disease is insanity. Refractory sprue is something serious that must be looked into as well as other autoimmune diseases which can closely mimic one anothers symptoms.

If you are still not feeling better - be proactive! Just because you have been diagnosed with celiac disease does not mean it is the only thing wrong with you.

[Imanistj]

I too would take prednisone, carefully prescribed by a trusted doctor if I had no other choice. When I was told I had autoimmune liver disease and learned that prednisone would probably become a regular, and possibly long term medication, I was very disturbed. I was more upset regarding the probable use of long term prednisone than I was about having a potentially fatal diagnosis. Of course, I would take it if it prolonged my life. However, if I developed the symptoms I feared most, using the med would severely diminish my quality of life. My purpose in writing a forceful warning was only to make people aware of the drug's consequences and to encourage informed use of the drug. Doctors and pharmacists frequently do not take the time to educate patients regarding the proper use of prednisone. It was never my intent to persuade anyone not to use this med if they believe their doctor has fully explained the potential side effects and they have made an informed choice to take it. I have, and will continue to use it as a short term med to break the cycle of any serious condition that doesn't respond to other meds. I am an asthmatic and very occasionally need prednisone. Most recently, it was prescribed because I had such severe muscle pain and exhaustion. The prescribing doctor used it to rule out conditions that respond to steroids. I apologize, Karrin, if my vehemence irritated you.

[Fiddle-Faddle]

Please be extremely careful with prednisone. I was put on it last year, but the doctor pulled off it after only 3 days--and my body went into shock.

I was never able to convince any doctor that going off the prednisone suddenly caused the horrible problems that immediately followed. They all said it couldn't POSSIBLY be the prednisone, even though I had every symptom--severely--listed for prednisone withdrawal. None of them seemed to even be aware of the potential for these side effects to occur.

I think too little is fully understood by doctors about medications, side effects, the adrenal system, and the immune system.

Even my most trusted doctor has made mistakes. Please remember that just because a doctor says it's fine doesn't make it so.

If I had to do it again, I would not go on the prednisone unless it were my only option.

[Karrin]

Imanistj, on Nov 18 2009, 11:24 AM, said:

I too would take prednisone, carefully prescribed by a trusted doctor if I had no other choice. When I was told I had autoimmune liver disease and learned that prednisone would probably become a regular, and possibly long term medication, I was very disturbed. I was more upset regarding the probable use of long term prednisone than I was about having a potentially fatal diagnosis. Of course, I would take it if it prolonged my life. However, if I developed the symptoms I feared most, using the med would severely diminish my quality of life. My purpose in writing a forceful warning was only to make people aware of the drug's consequences and to encourage informed use of the drug. Doctors and pharmacists frequently do not take the time to educate patients regarding the proper use of prednisone. It was never my intent to persuade anyone not to use this med if they believe their doctor has fully explained the potential side effects and they have made an informed choice to take it. I have, and will continue to use it as a short term med to break the cycle of any serious condition that doesn't respond to other meds. I am an asthmatic and very occasionally need prednisone. Most recently, it was prescribed because I had such severe muscle pain and exhaustion. The prescribing doctor used it to rule out conditions that respond to steroids. I apologize, Karrin, if my vehemence irritated you.

Oh it didn't at all and I didn't mean to imply you were in any way demonizing its use! My reply was a general one to anyone who might stumble upon this thread that is not feeling any relief. I think you are absolutely right to caution others and I was trying to do the same, but wanted to make sure they also understood that it had helped me tremendously and not to fear bringing up the option to their doctor it if they were still sick with no other explanations. I have and I am sure most people who come here have known their fair share of 'brush you by' doctors - or might not realize they have one. Very dangerous! I was simply afraid that others might stumble upon this thread and assume the treatment is always worse than the sickness, overlooking possible benefits as I once did (or think it was a way to cheat the diet). I am a big chicken and have always hated the idea of taking medicine, even tylenol, so I know how scary it can be to take that little leap! ;p I was trying to help inform as well, in my own clumsy little way.

[Mrs. Smith]

Have you been diagnosed with refractory sprue? You say you started Gluten-Free diet in june as in 5 months ago? I dont think thats nearly enough time to be healed from celiac. It took me a year for my symptoms to clear all of which were similar to yours. They did come and go and come back with a vengance a few times. And I was not cc'd either. It is such a long, slow healing process. I think your doing the right thing and when I was at my worst, I would have taken any medicine to stop the pain. Give it patience and time, I know how hard celiac can be but it does get better with time. Are you taking any vitamin suppluments by the way? Thats what eventually turned me around was finding out what I was deficient in and correcting it. Its a HUGE part of celiac because you are not absorbint the nutrients your body needs because of the damage in your intestine. Hope it helps.

[Glamour]

I appreciate the discussion on Prednisone, and was prescribed oral and topical by a Derm Assistant right off the cuff without a Derm ever seeing me. I do not think much thought at all went in to my case.

It was quite easy to find the positives and negatives about this drug. I did use the topicals for the 2 weeks on, taper off routine. I had terrible rebound issues with the rash spreading and my skin thinning and bleeding, as well as horrible insomnia and mood swings. I know several people that have had terrible experiences with it as well.

I figured the oral dose would do the rebound thing even worse. I also have had a lifetime of cortisone shots for allergies and maybe my body has had enough of that drug, and does not respond.

The topicals did not help my dx eczema/psoriasis for the last 3 years. I have been off of them for about 3 months. After suspecting DH as a possibility, I thought I would try the diet alone to see if it improved. It is very slow going. Last night I broke out the OTC .5% cortisone cream and used tiny amounts on the worst itchy spots. I really hate to do this. I noticed some immediate relief, which may be due the diet helping the skin. I am sticking to this diet come hell or high water, because overall it is more healthy, and it is my best chance.


Sometimes you are so miserable and not able to function, that you have to take the chance on questionable pharmaceuticals. I have not had good luck with Doctors on my issue. I honestly don't trust their judgment when they don't listen, don't test, and give you 5 minutes, or their assistant. I do realize that I need to find a new doctor.

I still may have to resort to oral prednisone, but will do so with an educated mind. Another drug that I feel the same way about is Dapsone, as I have high liver enzymes. But in the end it might be worth it as a diagnostic tool as well as some necessary relief.


I do not believe there is any one magic bullet or pill. After visiting this website, as well as others, I have come to believe that quality diet (not just removing gluten), removing sugar, stimulants, chemicals, adding exercise, controlling body weight and fat, and good medicine are the key to getting well and prevention of some of these so called autoimmune things being triggered. I do believe there is genetics at work, but what we do to ourselves, both positive and negative, will determine a good portion of our health, if we catch it in time.

[Fiddle-Faddle]

Glamour, would Benadryl (either topical or oral) help at all?

If it's any help, I too discovered the gluten-free diet after developing the worst rash of my life--it looked like really bad, oozing poison ivy crossed with shingles (without the nerve pain), and the doctors just shrugged and prescribed stronger and stronger topical steroids, and, eventually prednisone.

I know now that it was DH (and the totally symmetrical presentation SHOULD have tipped off the dermatologist, but no, of course not). As much as I hate and detest prednisone, I do wonder if the fact that I was on it when I went off gluten might have actually helped.

The only times I ever had a recurrence were twice. Once in the beginning I ate instant oatmeal that contained wheat (forgot to read the package til it was too late), and once when we had to eat out for a whole week, and I got lazy and didn't check ingredients.

Another thing that seems to help me is consistent exercise, but I have no idea why it seems to help.

Good luck!

[Glamour]

Thanks Fiddle, yes sometimes liquid children's benedryl is the only thing that helps me to relax and sleep for a while. After going gluten-free, I was worried about the meds, as I was taking Kroger branded benedryl. Perrigo? the maker of Kroger generic, called me tonight and let me know it was gluten free...Yipee!



Your rash sure sounds like mine, glad yours got better.

[Brooklyn528]

Hello. I myself am now on long term Prednisone treatment for Autoimmune Hepatitis. I started at 50mg a day, and I have since tapered down to 20mg. The treatment has worked great for me, and my liver enzymes have gone down a lot. I still have celiac symptoms after being gluten free for 6 months and the Prednisone, but my recent EGD with biopsy shows that I have mild atrophy which is great considering that I had severe atrophy in January. When on Prednisone, the main thing to monitor are your vitamin levels and bone density. I take 3 multi vitamins, 3 calcuim 500mg with D, and 3 Flaxseed oil every day, and always with food because there are many things you can't absorp without having something in your stomach. I just wanted to add a little more info. Even though my other AI diseases are improving, my renal function has gone downhill and I am having horrible joint pain that is only helped a little by pain medicine. I'm being tested for RA and Lupus, and I go to see a urologist today. As for how long it takes to repair, my GI said that it could be anywhere from 2 months to a year and that every celiac is different.

Brooklyn

[Fiddle-Faddle]

Brooklyn, I wish I knew what could help your hepatitis.

I do know that many people with RA are triggered by both gluten AND casein. I know it's bad enough having to be off gluten, but it might be worth trying casein-free for a few weeks.

I have a 16-year-old student, who had been diagnosed with RA. It got a little better with gluten-free (although all her OTHER symptoms disappeared), and going gluten-free made the RA completely disappear. Her physical therapist is now writing a paper about her.

Interestingly, she says that she can consume RAW milk, and cheeses made from raw milk, with no problem. Not so with pasteurized milk, even organic.

If you still have atrophy, you might consider sublingual B12 instead of pill form--you are likely still not absorbing nutrients. There again, the casein might be preventing total healing.

Good luck, and please keep us posted, especially if you find anything else that seems to help.

[Karrin]

Mrs. Smith, on Nov 18 2009, 02:23 PM, said:

Have you been diagnosed with refractory sprue? You say you started Gluten-Free diet in june as in 5 months ago? I dont think thats nearly enough time to be healed from celiac. It took me a year for my symptoms to clear all of which were similar to yours. They did come and go and come back with a vengance a few times. And I was not cc'd either. It is such a long, slow healing process. I think your doing the right thing and when I was at my worst, I would have taken any medicine to stop the pain. Give it patience and time, I know how hard celiac can be but it does get better with time. Are you taking any vitamin suppluments by the way? Thats what eventually turned me around was finding out what I was deficient in and correcting it. Its a HUGE part of celiac because you are not absorbint the nutrients your body needs because of the damage in your intestine. Hope it helps.

My only official diagnosises are celiac, ra, endometriosis and reynaulds. I do believe I have another autoimmune disease however. I was receiving no relief from the diet except in my first few weeks. My digestive symptoms were also atypical for me - before going gluten free I was chronically constipated and was inflated like a balloon. For me the prednisone is worth it for my RA alone. I'm very sorry I did not start it earlier. I was too afraid of all the side effects I read about and in the meantime my RA really took a bad toll on my joints. My fingers are slightly deformed, hands weak, and my right knee makes it hard to climb stairs. I was also using my celiac symtoms (joint pain/swelling) as an excuse for the damage and hoping the diet would clear it up. Bad mistake.

Perhaps my other symptoms might have cleared up after a year or more on the diet alone, however I was and am not willing to take that chance. The last 2-3 months my health had taken a new turn for the worse. I was as bad, if not worse than before starting the diet in June - worse than I have ever been. I really think I was heading for disaster. I was not digesting any of my food - it was all passing through - solid. I must stress my diet has been all whole organic foods - avoiding things like nuts, eggs etc just in case. I've been taking supplements, but I doubt I was absorbing any if I wasn't digesting food. Whatever was going on it has stopped. My stools are normal -solid and brown for once! - and the nausea is gone alone with all my other symptoms. It makes me suspect refractory sprue, which I've read does not clear up with diet alone. It needs help to get there. I've also put on a bit of healthy weight finally!

The dose I'm on is also not nearly as high as some of what I've been reading in this thread. My doctor actually just reduced it. I am on 15mg a day. My side effects have all but disappeared with the lower dose (I was on 20 before). I can not imagine 50.

[JillianLindsay]

I'm sorry if this is over-simplified and/or repetitive (I didn't have time to read all the other posts).

I am put on prednisone for about two weeks at least twice each year for problems with my asthma.

I do not enjoy it, but it certainly helps me breathe easier!

The side effects I experience are: constant hunger/huge appetite, sore eyes (sometimes blurred vision), sore skin (a strange one, but it's well-documented actually), irritability and restlessness.

I know someone with another type of auto-immunte disease and has to be on predinose (and other inmmuno-suppressant drugs) for the rest of his life. He`s been on it for about six years and has gained around 50 lbs. It has saved his life, but he suffers a lot for having gained so much weight.

As with any medication, everyone reacts differently, and the benefits usually (but not always) outweigh the risks. It`s important to be well-informed and talk to the prescribing DR about any concerns or questions you have so you feel comfortable with whatever he is asking you to take.

Jillian