Cushion's Disease And Celiac?

[annapumpkin]

Hi I was diagnosed with Celiac about 6 years ago and have been gluten free ever since, August of 05 I had to have my gallbladder removed due to a 1/2 inch diameter gallstone that took gallbladder function to 13%. After that i have been fine and pain free. About 5 months ago i started to get intense abdominal pain again, kinda like gluten only it never subsides in intensity. My GI doctor had only one solution for me...pregnisone and vicoden. Along with all this in the past 5 months i have also gained 80+ pounds and gotten major stretch marks all over my body. The funny thing (or not so funny) is that I cant keep and havent been able to keep any food down. I am now eating cream of rice cereal and somedays i even throw that up. I have chronic diarrhea and lost my job due to the fact that i have accidents. I havent had my period since August of 07 and I have terrible migraines. My doctor thinks that I may have Cushion's Disease but my blood and urine tests are showing up normal. So my doctor is keeping me on pregnisone and vicodin with no future stop date, because the endocrinologist wont see me due to normal lab tests. I noticed however when i decreased my dose of pregnisone 100% of the symptoms came back within 2 days. The pain is so horrible I thought the gallbladder pain was bad...but this...I feel like im going to go insane the vicoden doesnt even touch it anymore!...Anybody have any advice or similar situations?! HELP!

-Cheryl

[Morrisun]

Hmm...have you had any tests done like CT scan or anything like that? I think you should try to find someone who will do more testing, have they done any of these??

Open Original Shared Link

[annapumpkin]

My GI doctor has run the 24-hour urine cortisol level test and it came back all normal...the other tests I have never even heard of! That link was soooo helpful...thanks. I have another Doctor's appointment on Monday and I will know then if she decides to take me of pregnisone and do more tests. Im kinda freaked out.

-cheryl

[Morrisun]

Yeah I don't blame you! I had some of those symptoms and they finally determined I have PCOS, and my blood work ALWAYS comes back normal. Good luck on Monday!

[cyberprof]

Hi I was diagnosed with Celiac about 6 years ago and have been gluten free ever since, August of 05 I had to have my gallbladder removed due to a 1/2 inch diameter gallstone that took gallbladder function to 13%. After that i have been fine and pain free. About 5 months ago i started to get intense abdominal pain again, kinda like gluten only it never subsides in intensity. My GI doctor had only one solution for me...pregnisone and vicoden. Along with all this in the past 5 months i have also gained 80+ pounds and gotten major stretch marks all over my body. The funny thing (or not so funny) is that I cant keep and havent been able to keep any food down. I am now eating cream of rice cereal and somedays i even throw that up. I have chronic diarrhea and lost my job due to the fact that i have accidents. I havent had my period since August of 07 and I have terrible migraines. My doctor thinks that I may have Cushion's Disease but my blood and urine tests are showing up normal. So my doctor is keeping me on pregnisone and vicodin with no future stop date, because the endocrinologist wont see me due to normal lab tests. I noticed however when i decreased my dose of pregnisone 100% of the symptoms came back within 2 days. The pain is so horrible I thought the gallbladder pain was bad...but this...I feel like im going to go insane the vicoden doesnt even touch it anymore!...Anybody have any advice or similar situations?! HELP!

-Cheryl

Cheryl, I'm sorry you're in pain. Do you mean Cushing's Disease? Wow, that plus celiac is a lot to handle and I think Cushing's is more rare than celiac, and I have no idea how they treat it, so I can't help there.

Just like celiac, you have to keep at the doctors and keep being the squeaky wheel that gets the grease. Find a Cushing's expert (try a Cushing's support website maybe) or an endocrinologist.

Best of luck to you!

[RiceGuy]

I just Googled to find these:

Info about the condition:

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Info and supplements that can help:

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Support community:

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HTH

[cmbajb]

Hi. I had Cushing's Disease, pituitary tumor, surgery in 1995. Your doctor needs to remember that there is cyclical Cushings, which means that the cortisol levels are not high constantly, they cycle up and down. Good endos will do multiple 24 hour urine tests, morning and evening blood cortisol tests and daytime and during the night saliva tests. There are others to do also, of course, but these are the easiest beginning points. Note that you could also have Cushings due to taking the prednisone. The symptoms are just as bad as Cushings by a tumor, and the withdrawal can be just as difficult. Good luck with your doc on Monday.

[annapumpkin]

Hey all, more depressing news unfortunately. I went to my Dr on Monday and she never showed and I was passed on to a new Dr that knew totally nothing about me...he didnt even bother to pull my medical record! I explained what was going on and the guy tried to convince me i wasnt a celiac!!! I almost laughed at him...if he had bothered to look at my record, I have had 3 separate tests showing I was BUT NO...he wanted to conduct yet another test. So I got to spend my afternoon sitting in the lab with 103 degree fever due to having a cold...no one cared. I couldnt freakin believe the doctor had no clue! So he renewed my prescription of prednisone and vicodin for another 3 WEEKS til I can see the other doctor again...hopefully this time she will show

As far as the prednisone I have only been on a low dosage for a month and all my syptoms went away until i went down to the 5mg dose and within 2 days all syptoms returned. This pain and my symptoms have been going on for almost 4 months now...with still no leads.

[Judyin Philly]

SO SORRY TO HEAR ABOUT YOUR APT

WE CAN GET SO DOWN OVER APTS LIKE THIS.

SINCE YOUR GB WAS TAKEN OUT, HAVE YOU LOOKED IN HABBA SYMDROME?

YOU CAN GET IT W/ OR W/O A GB.

I'LL TRY TO FIND THE LINK ON HERE I PUT UP.

JUDY

HERE'S ONE LINK AND CK POST # 24 I THINK IT WAS

Open Original Shared Link

[ravenwoodglass]

This is just a thought, and if you have eliminated the possibility forgive me mentioning it. Have you checked all the meds they are giving you with the company that makes them? Are they prescribing any generics? Did they prescribe anything new before all this started?

[annapumpkin]

Hey Judy thanks for the advice im definately going to check out that link.

Raven, to answer your question before all this started I was totally medication free. They started me on prednisone last month...and they started me on vicodin about 3 months ago

I called the companies and was informed they were gluten free medications especially the prednisone, which I was also told helps treat the symptoms of gluten intolerance. Other than that im not taking anything. I have learned from all my past medical experience that my body loves to hide things....all my tests show up perfectly normal even when taken to the ER for massive pain. My 1/2 inch diameter gallstone didnt even show up on the HIDA scans and I went through 3 of them! Thanks for all your help and advice guys I really appreciate it.

[JustMe75]

I was thinking Habba too, Judyin Philly.

I saw a show on Discovery Health Channel about it and the woman who had it said she had uncontrollable diarrhea and had accidents too. Its a simple fix, you take a bile binding pill called cholestyramine 1/2 hour before meals and the problem goes away. I would look into it, maybe even call that Dr Habba since I doubt most other doctors know about it.

Here is his website

Open Original Shared Link

Good luck!

[annapumpkin]

Wow that is interesting you would say that....my GI doctor just put me on the powder form of cholestyramine about a week and a half ago...so far no improvment...but it might be too early to tell. She is having me take it for the next year! My GI doctor also is going to try to take me off the prednisone due to the fact im starting to show signs of diabetes from it. She wants to replace it with a slow release steriod called Entocort. I still have to do my own research on it.

[AliB]

You might, like me, actually be very intolerant of all carbohydrates. I went gluten-free/Dairy Free in January and immediately the most severe pain I had in my stomach, and the diarrhea stopped but I was still getting issues with quite a few other foods.

The only things that didn't affect me were basic foods, plain unprocessed meats, fish and poultry, well cooked vegetables and some fruits.

I coped like that for a while, then 2 weeks ago I went on to the Specific Carbohydrate Diet, which was similar to what I was already doing, but I have cut out all carbs apart from simple ones in honey, yogurt, fruits and vegetables.

Now after the two weeks I have noticed over the last 2 days that my stomach has stopped reacting to most of the other foods - I even had some cheese 2 days ago without getting the reaction I would have had.

A severe Candida or other bacterial overgrowth can also be behind severe stomach pain and discomfort, bloating and diarrhea/constipation, and carbohydrates and sugar encourage that.

The fact that it came on a few months after you started gluten-free does suggest that you have also become very intolerant of other foods. The problem is that when we go gluten-free we often tend to compensate by eating lots of carbs made from gluten-free products and flours. Because Celiacs and GI's can often have a problem with not just gluten, but actual carbohydrate intolerance, we eventually will become intolerant of the other carbs that we are now replacing the Gluten with.

Because the problem is Carb intolerance rather than just gluten, consuming them also inhibits the repair and restoration of the gut so we can then find that we are back at square one. I keep seeing this on the forum. People get better for a while after dropping the gluten then start to get sick again. The trouble with Carbs too, is that the more you have, the more you want. Your weight gain more than anything suggests an extreme Carbohydrate Intolerance. The more carb you have, the more toxins the bacteria produce, the more fat the body has to make to store it in because the liver can't cope, the more fat you get - it's a vicious cycle.

Can I suggest you try what I have done and get back to basics for a while? It is a bit hard to start because of the craving for carbs, but after a short while the craving goes and it gets easier, especially when you start to feel a bit better. It can take a few weeks to show any result and you do have to be pretty disciplined, but it is worth it in the long run.

If you want to try it you can Google Specific Carbohydrate or SCD and I also have started another thread on it on the Other Food Intolerance and Leaky Gut Issues section.

[annapumpkin]

WOW! that was alot of information to digest...literally...lol. I never even knew that it can go that far. I am definately going to take a closer look at that and try it....I mean at this point I am willing to try anything just to get rid of that pain. Thank you so much for all that information AliB, wow, dont mean to sound redundant but I never even looked at it that way! thanks again.

[Generic]

It's possible you could be having problems with your common bile duct. I had my gallbladder out in Jan and continue to have pain. I am currently trying to get diagnosed by my dr. Here is a link that itchy girl posted.

Open Original Shared Link also check this link out.

Open Original Shared Link

[itchygirl]

More fun reading

Open Original Shared Link

Open Original Shared Link

If you are having severe pain you may wish to push for more diagnostics, as well as a better long term pain management choice than vicodin (too much tylenol). Alternative pain control methods, such as the duragesic patch, may be easier on both you and your liver. Vicodin is only good for short term limited pain control.

[annapumpkin]

Ok just an update! My GI Doctor is now thinking that I may be a refractory celiac, which means that I am still showing most symptoms of celiac even though I am on the gluten free diet. The only thing is is that I am going to be on a steriod called Entocort for awhile. I did look into the previous links that you guys sent me and brought them up to my doctor...she said she wants to do a little homework first but will be looking at them. But for right now, or until she conducts more diagnosics she wants to put me on Entocort. Even though she is doing this, I have changed my diet to mostly fiber and protien to help rule out the yeast factor (cant hurt right). I have been feeling a little better but I still am having episodes. Anyways, thanks for the help and the links they have been tremendously helpful!

-Cheryl

[cmichelle]

Get a scan done! They may have dropped a stone! It could be blocking your intestinal tract - sounds very serious if you can't keep anything down, don't wait!

Hope you feel better soon!

[annapumpkin]

Hey all!

Sorry it has been awhile since I have posted. Here is an update. I am still staying away from all the specific carbs and sticking with the high fiber, high protein. It really hasnt made a difference though...in fact I am still gaining weight! I really dont know what to do anymore. When my doctor transitioned me from the prednisone to the entocort...i couldn't have either in my system, so I went 2 days without steriods. Let me tell you that was by far the worst 2 days I have had in a long time. I had an episode each day and they were soooo painful and extreme I passed out the first time from the pain and the second time I was throwing up with diarrhea from the pain. I still managed to refuse going to the ER though .

Since I have been on the Entocort the episodes have decreased to about 2-3 times a week and only need the occasional vicodin...I am usually able to tough out the pain. I am still having the daily diarrhea and sometimes still having accidents. I did have my period for the first time in 7 months though! the only problem is is that it lasted 9 days and made me borderline anemic! I cant win!!!!!

My doctor ordered a barium swallow and I get the results tomorrow. Only problem is, is that my doctor quit last week...I mean this is the only doctor familiar with the past 8 months of my medical testing! The only other GI available is the one that wasnt convinced I was celiac. (the one I talked about in previous post). So I am starting from square one again. And my pills are almost gone.

And last but not least on top of all that my weight gain is getting really out of control. I have gained 55 pounds in the past 8 months. I dont even recognize myself anymore...all i see is this fat blob...and no one can help me! I mean im friggin eating one meal a day due to lack of appetite still and its all fiber and protein at that! Im really getting deep depression. I have heard of this diet called Siemons protocol or HCG diet and was wondering if that might help me at all. If anybody has any info on that let me know!

Other than that, this has been my life since last post. Sorry its so depressing. Hopefully tomorrow I will learn that my new doctor isnt incompetant and can help me. Cheers!

[cyberprof]

Hey all!

Sorry it has been awhile since I have posted. Here is an update. I am still staying away from all the specific carbs and sticking with the high fiber, high protein. It really hasnt made a difference though...in fact I am still gaining weight! I really dont know what to do anymore. When my doctor transitioned me from the prednisone to the entocort...i couldn't have either in my system, so I went 2 days without steriods. Let me tell you that was by far the worst 2 days I have had in a long time. I had an episode each day and they were soooo painful and extreme I passed out the first time from the pain and the second time I was throwing up with diarrhea from the pain. I still managed to refuse going to the ER though .

Since I have been on the Entocort the episodes have decreased to about 2-3 times a week and only need the occasional vicodin...I am usually able to tough out the pain. I am still having the daily diarrhea and sometimes still having accidents. I did have my period for the first time in 7 months though! the only problem is is that it lasted 9 days and made me borderline anemic! I cant win!!!!!

My doctor ordered a barium swallow and I get the results tomorrow. Only problem is, is that my doctor quit last week...I mean this is the only doctor familiar with the past 8 months of my medical testing! The only other GI available is the one that wasnt convinced I was celiac. (the one I talked about in previous post). So I am starting from square one again. And my pills are almost gone.

And last but not least on top of all that my weight gain is getting really out of control. I have gained 55 pounds in the past 8 months. I dont even recognize myself anymore...all i see is this fat blob...and no one can help me! I mean im friggin eating one meal a day due to lack of appetite still and its all fiber and protein at that! Im really getting deep depression. I have heard of this diet called Siemons protocol or HCG diet and was wondering if that might help me at all. If anybody has any info on that let me know!

Other than that, this has been my life since last post. Sorry its so depressing. Hopefully tomorrow I will learn that my new doctor isnt incompetant and can help me. Cheers!

Annap, I hope you have good luck tomorrow. Write back and let us know what happens.

~laura

[annapumpkin]

So, my doctor's appointment was actually in a way very encouraging. My new doctor spent literally 25 min with me answering all my questions! On the bad side I was told that there is nothing more that the GI department can really do for me due to the fact that they cant solve my issue. They referred me to start up with an endocrinologist. My new doctor in the meantime wants to go back and do both scopes again

But the good part about that is that they will be doing them both at the same time, so I will be knocked out and not feel anything this time.

I did find out though that I am now officially anemic, which I kind of already knew but it was confirmed. The new doctor is also genetically testing me for Crohn's, IBD, IBS, and colitis. He also prescribed me Belledonna to replace the vicodin! (YAY, i finally get to ditch that stuff) On the other hand, he also prescibed an antideppressant which he stated would help with the pain and sleeplessness. So, all I really have to say is...we shall see. Not much anyone can do at this point but wait. Thanks for the support guys, and thank you soooooooo much for letting me vent.

I will keep you guys updated as I know more.

[cyberprof]

So, my doctor's appointment was actually in a way very encouraging. My new doctor spent literally 25 min with me answering all my questions! On the bad side I was told that there is nothing more that the GI department can really do for me due to the fact that they cant solve my issue. They referred me to start up with an endocrinologist. My new doctor in the meantime wants to go back and do both scopes again

But the good part about that is that they will be doing them both at the same time, so I will be knocked out and not feel anything this time.

I did find out though that I am now officially anemic, which I kind of already knew but it was confirmed. The new doctor is also genetically testing me for Crohn's, IBD, IBS, and colitis. He also prescribed me Belledonna to replace the vicodin! (YAY, i finally get to ditch that stuff) On the other hand, he also prescibed an antideppressant which he stated would help with the pain and sleeplessness. So, all I really have to say is...we shall see. Not much anyone can do at this point but wait. Thanks for the support guys, and thank you soooooooo much for letting me vent.

I will keep you guys updated as I know more.

Annap, I'm glad you got new meds and also that you got a referral and more testing. I hope it helps but if not keep looking.

~Laura