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Gastroparesis Sufferers


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25 replies to this topic

#1 jaten

 
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Posted 12 May 2009 - 05:01 PM

I know that there are a number of us diagnosed with Celiac and also with gastroparesis because I've seen a few threads scattered around here and there. This thread is developed so that those of us diagnosed with both can ask questions, share suggestions, whatever is relevant to someone struggling with celiac and gastroparesis.

I haven't found any reputable research associating gastroparesis and celiac, so I'm not sure "Related Disorders" is the forum for this thread. (I'm not saying there isn't reputable research tying the 2 together; I just haven't found it.) Browsing the forum topics, however, Related Disorders seems the most logical fit.

I'll start us off. Other C & G sufferers please join and let's build a healthy discussion thread!
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#2 jaten

 
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Posted 12 May 2009 - 05:32 PM

Long story, short, I was diagnosed with Celiac in 2005 (biopsy), and went very strictly gluten free. I had grown pretty comfortable with the gluten free diet and life was good. Then gastroparesis struck. Almost a year ago I was diagnosed with idiopathic gastroparesis, and was prescribed domperidone and cisapride for the gastroparesis itself and zofran for the associated nausea.

At first I could only eat one small meal a day. After awhile I was only able to eat a meal every 2-3 days. Now, it's liquids with a small meal about once a week. Ensure, fruit juices, and recipes on the link below are my mainstays. My gastroenterologist and a gastroparesis specialist (after further testing) are both recommending a GES device trial. I'm thinking about that.

The most helpful dietary information I've found so far is found here:
Diet Intervention for Gastroparesis

Particularly helpful to me were the smoothie recipes beginning on pg 10. They are working very well for me.

I'm looking for ways to incorporate protein into my diet. I see Ensure makes one that is a protein enhanced, but so far I haven't found it around here.
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#3 Salax

 
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Posted 13 May 2009 - 06:39 AM

Hi there! I too suffer from Gastroparesis. Although I am not completely familar with it, my doctor basically told me that my food/liquids don't digest at a normal rate. He never said "Gastroparesis". This was back in 2000/2002, when I did a gastric emptying study. They found that after a meal of egg salad sandwhich and apple juice, my stomach only emptyed 12% of it's contents within an hour and a half. :blink:

I was shocked to find in my paper work about a week ago this year...that this has a name and I was diagnosed with this (Gastroparesis) and never knowing what it was or what I could do about it. To top it off I have Celiac and Hashimotos... :o And a few other companions! LOL.

Thanks for starting this thread, I would like to learn more about Gastroparsis as I can.
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#4 jaten

 
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Posted 13 May 2009 - 02:45 PM

Hi Salax & welcome! How odd that your dr. didn't give you a name for the "slow emptying" malady :rolleyes:

Does it cause you much discomfort? I'm guessing maybe not, since it's not something you've needed to follow up on.

Please ask questions (not that I have the answers, but perhaps someone here will), and share what you learn.
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#5 Salax

 
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Posted 13 May 2009 - 02:55 PM

It doesn't seem to give me much trouble. However; I think it might be a big part of my weight gain as well as celiac as I always seems hungry, but now being gluten-free I don't feel hungry all the time. I think that even though it's slow digesting it actually at least gets some nutritional value from my food. :D
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#6 beachbel

 
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Posted 15 May 2009 - 10:51 AM

Hi! I too have gastroparesis and refractory celiac disease. It is a fun combo. I have been dealing with the gastroparesis for a couple of years now. Right now, I am getting botox injections about every three month to open the pyloric valve which allows the stomach to empty easier. It has really helped! I might consider a pyloriplasty in the future (a surgery to permanetely open the valve). The doc also has me trying Iberogast from Germany (you can buy it here in the US). It is an herbal supplement that helps many people with GP. Other things that have helped a little is eating mints with peppermint oil (it helps with nausea ) and also sea bands that you wear on your wrists. My doc also had me try Domperidone (an Rx out of Canada) that seemed to help but I developed a sensitivity to it but for some people it is a nice alternative to Reglan.

Unfortanately, the real problem for me right now is the celiac disease. I have a feeding tube to help me get my nutrition. I just found out I am slightly allergic to soy so I am eliminating all sources to see if it helps. I am also lactose intolerant. The doc told me to just avoid dairy and not products made with milk, but I think I am going to avoid those products to see if it helps.



Well, maybe those ideas can help someone. Good luck everyone!
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#7 jaten

 
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Posted 17 May 2009 - 07:03 PM

Hi! I too have gastroparesis and refractory celiac disease. It is a fun combo. I have been dealing with the gastroparesis for a couple of years now. Right now, I am getting botox injections about every three month to open the pyloric valve which allows the stomach to empty easier. It has really helped! I might consider a pyloriplasty in the future (a surgery to permanetely open the valve). The doc also has me trying Iberogast from Germany (you can buy it here in the US). It is an herbal supplement that helps many people with GP. Other things that have helped a little is eating mints with peppermint oil (it helps with nausea ) and also sea bands that you wear on your wrists. My doc also had me try Domperidone (an Rx out of Canada) that seemed to help but I developed a sensitivity to it but for some people it is a nice alternative to Reglan.

Unfortanately, the real problem for me right now is the celiac disease. I have a feeding tube to help me get my nutrition. I just found out I am slightly allergic to soy so I am eliminating all sources to see if it helps. I am also lactose intolerant. The doc told me to just avoid dairy and not products made with milk, but I think I am going to avoid those products to see if it helps.



Well, maybe those ideas can help someone. Good luck everyone!

Hey Beachbel! Yes, your information is very helpful, but I am sorry for your troubles. Celiac Question: How did your dr. diagnose you as refractory? I had villous atrophy on biopsy at 2 1/2 yrs gluten free (negative at that time for antibodies). My dr. didn't call it refractory, but ...???

I am not familiar with the pyloriplasty, but will look into it. My drs are encouraging a trial with a gastric electrical stimulator, and then likely a permanent one. And Iberogast is a new one to me! It's interesting that our drs seem to have very different approaches. I take Zofran 3 times/day for nausea & fortunately, insurance covers all but $10 of it per month!!


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#8 beachbel

 
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Posted 17 May 2009 - 08:31 PM

It seems the refractory celiac dx is not an easy one to make, and my doc is still getting to the bottom of it. I have had a few endoscopes this year all showing the villous atrophy and inflammation. Along with that I have had worsening symptoms. I get really sick whenever I eat anything and a lot of pain, unrelated to the gastroparesis. I did get better for awhile while on Entocort a steroid. When the doc took me off the Rx because I was doing good, I had a major relapse. All of these things along with a lot of tests (process of elimination) has lead the doc to refractory dx. He is talking about sending me to the Mayo clinic now if things don't start improving. I keep hoping that if it is truly refractory celiac that we have caught it in time and can get it into remission before lymphoma develops.

The Iberogast seems to really be helping me with the gastroparesis. My symptoms are not gone but improved. Another good resource for gastroparesis is at Inspire.com with the motility or GP support group. I have found a lot of good info from other GP sufferers. Some of them have tried the electric stimulator and you could ask specific questions from them.
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#9 rlbcabjm

 
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Posted 27 May 2009 - 08:04 PM

Hi, my daughter is 17 and has celiac, DH, casein intolerance, and gastroparesis. Her celiac test was negative after a two month gluten-free diet. In January the doctor told her to start eating bread products again and she started breaking out in a rash on her hips. He said he thought it was a vitamin def. rash and to give her a multi. He also told us about the gastroparesis at this time based on her results from the stomach emptying scan. Her stomach only empties at 16%. Her doctor has her on domperidone, but he told us today that he got a letter stating that doctors in Oklahoma are no longer allowed to prescribe it or they will lose their license. I don't know what we will do then. She went from 138 to 113 (lowest point in Feb.) before the medicine. She missed her whole Jr. year of high school last year (homebound program). The rash spread to her bottom in March so I took her back off gluten and within a week and a 1/2 it was gone. She still has purple looking scars all over her bottom but she is glad that it doesn't itch anymore. She is so much better now. I hope she stays that way so she can finish high school. The doctor looked at it today and said it definately looked like the celiac rash now and to keep her gluten free. She has gained up to 134 in a 2 month period (18 llbs since her visit in March). He said the dopmeridone won't be available after a month or so. When it runs out the compounding pharmacies won't be able to compound it anymore. I could not find any information to corraberate what he told us, so I hope he is wrong. The pharmacy said that they haven't received any letter tellling them not to make it so they will make it for her until her prescription runs out or they get told not to do it any more. I looked on the OK State Board for Pharmacies and couldn't find any info on this. Has anyone else heard about this?
Thanks, Claudia
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#10 beachbel

 
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Posted 28 May 2009 - 05:09 AM

Hi, my daughter is 17 and has celiac, DH, casein intolerance, and gastroparesis. Her celiac test was negative after a two month gluten-free diet. In January the doctor told her to start eating bread products again and she started breaking out in a rash on her hips. He said he thought it was a vitamin def. rash and to give her a multi. He also told us about the gastroparesis at this time based on her results from the stomach emptying scan. Her stomach only empties at 16%. Her doctor has her on domperidone, but he told us today that he got a letter stating that doctors in Oklahoma are no longer allowed to prescribe it or they will lose their license. I don't know what we will do then. She went from 138 to 113 (lowest point in Feb.) before the medicine. She missed her whole Jr. year of high school last year (homebound program). The rash spread to her bottom in March so I took her back off gluten and within a week and a 1/2 it was gone. She still has purple looking scars all over her bottom but she is glad that it doesn't itch anymore. She is so much better now. I hope she stays that way so she can finish high school. The doctor looked at it today and said it definately looked like the celiac rash now and to keep her gluten free. She has gained up to 134 in a 2 month period (18 llbs since her visit in March). He said the dopmeridone won't be available after a month or so. When it runs out the compounding pharmacies won't be able to compound it anymore. I could not find any information to corraberate what he told us, so I hope he is wrong. The pharmacy said that they haven't received any letter tellling them not to make it so they will make it for her until her prescription runs out or they get told not to do it any more. I looked on the OK State Board for Pharmacies and couldn't find any info on this. Has anyone else heard about this?
Thanks, Claudia



I don't know anything about your area but I used to get Domperidone online from a pharmacy in Canada. It was cheaper too. You might want to check into it. The pharmacy just has your dr email a prescription.
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#11 rlbcabjm

 
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Posted 28 May 2009 - 06:40 PM

Hi, We tried a pharmacy in Canada and after waiting for the medicine for 4 months and 5 emails asking why we haven't received it they sent us an email in April saying they were closing their doors because it was too hard to get the medicines into the U.S. According to the doctor he can no longer prescribe it anyway. Thanks anyway, I appreciate your comment. We will just take it one day at a time for now. He thinks the Celiac is what caused her acid reflux and the gastroparesis and that it may resolve since she is gluten and casein free. I hope he is right.

Claudia
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#12 Salax

 
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Posted 01 June 2009 - 06:46 AM

I was wondering if anyone else with gastroparesis and celiac has any other issues with their gall bladder or other stomach organs? I think I have a gall bladder issues. After eating it hurts under my right rib cage upper right area with some back pain...when I eat fatter foods it's even worse or with salads. My hunch is that its my gall bladder. I am going to my pcp today to discuss with him. I was just wondering if you all had any similar situations?
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#13 FMcGee

 
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Posted 03 June 2009 - 05:10 PM

I just found out I might have gastroparesis and am kind of panicking. What am I supposed to eat? Will it go away? I've been maintaining a good attitude with the celiac stuff but this is feeling very last-straw. Help!
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#14 mygfworld

 
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Posted 04 June 2009 - 08:27 AM

I was wondering if anyone else with gastroparesis and celiac has any other issues with their gall bladder or other stomach organs? I think I have a gall bladder issues. After eating it hurts under my right rib cage upper right area with some back pain...when I eat fatter foods it's even worse or with salads. My hunch is that its my gall bladder. I am going to my pcp today to discuss with him. I was just wondering if you all had any similar situations?



I've also got gastroparesis and celiacs. They took out my gallbladder before I found out about Celiacs. And they've taken my appendix too. I had the pain on the right under my rib cage. I feel much better with out it. Just stick to low fat foods after. As for the gastroparesis, I was put on Reglan for a while. Now I keep getting notices that there are some really bad side effects from it. I dont have any of those, but I stopped taking the meds a long time ago. Once in a while I get the fullness for days, but it calms down. There are books about foods to eat and those to avoid for gastroparesis. I think broccoli, cauliflower, and possibly lettuce are on the bad lists. It's been a long time since I looked into the good and bad foods.

Thanks for starting this topic!
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#15 Salax

 
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Posted 08 June 2009 - 12:11 PM

Thanks for the reply. Sorry I am delayed in getting back to you, I ended up in the hospital! As it turns out it's ulcers and although my gall bladder is dumping some bile into my stomach.... :ph34r: ............ We are trying to heal the stomach before we result into removing the gall bladder. I have more tests to do. On the flip side, my villi are beautiful!! :D

Still hurts to eat though.... :(
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!





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