Gastroparesis Sufferers

[jaten]

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!

[jaten]

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:

Open Original Shared Link

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.

[Salax]

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.

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... And a few other companions! LOL.

Thanks for starting this thread, I would like to learn more about Gastroparsis as I can.

[jaten]

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

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.

[Salax]

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.

[beachbel]

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!

[jaten]

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!!

[beachbel]

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.

[rlbcabjm]

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

[beachbel]

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.

[rlbcabjm]

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

[Salax]

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?

[FMcGee]

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!

[mygfworld]

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!

[Salax]

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.... ............ 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!!

Still hurts to eat though....

[RollingAlong]

Bernstein's Diabetes Solution has some info/tips on gastroparesis and there is some discussion on the Bernstein forum, including helpful supplements, etc.

[Di-gfree]

I have gastroparesis - well, I don't have an official diagnosis of it. It started quite a few years after being diagnosed with celiac; my digestion slowed to a crawl; and shortly after, I was diagnosed with Hashimoto's (last year). I've got many other hormonal imbalances, too, in relation to hypopituitary. I'm hoping the slow digestion is actually more of a hypothyroid symptom (especially since I don't have my thyroid hormone optimized yet because of extenuating hormonal factors that I won't bore you with). So, if I ever get my hormones all balanced (I'm not holding my breath!), I'm hoping the digestion will speed up.

The gastroparesis is uncomfortable for me. Some days I'm better than others. I stay full for a really long time. I'm full now (first thing in the am, and haven't even eaten yet).

[Salax]

That full feeling for me seems more prominent now than before. I am hoping for me it will help with weight loss as well. That could be a good side affect for me. Since this whole deal started in 2000 I have gained about 80 pounds. Thank goodness I am tall, so I can carry better than most, but I would like to be "back to normal" at some point.

[Juliebove]

I've stopped eating lunch. That really seems to help. Now I just have a small snack in the afternoon to keep my blood sugar stable.

[BritChick]

I was so relieved to find these postings on this website. I've been gluten free for over 6 years. I was managing very well without gluten. The last six weeks have been a gastrointestinal hell. I've had multiple dr. visits, tests, 2 ER visits where I was doped up with morpheine and sent home again, and now a possible diagnosis of gastroparesis. 6 weeks ago I began having severe nausea, burping and awful back pain in my upper back. Gallbladder was ruled out with an ultrasound, then a hida scan, and then an abdominal CT scan. The ER thought it was a heart attack both visits and ran chest CTs etc. and all was good there. The second ER visit was while I was waiting for an endoscopy and once they got me into the surgical room the Dr. was too concerned with my pain level to put me under and had me gurneyed over to the ER. The pain was so bad that while I was at the ER I just wished for it all to be over. Pancreas, Liver and all the usual suspects were all ruled out as causes. I finally had the endoscopy which found nothing other than some inflammation in the lower digestive tract but no obvious cause such as bacteria etc. I've missed 6 weeks of work but am so fortunate in that my employer is letting me handle things from home. We've had to really push the doctors to get help. Initally I was loaded up with antacid medications which did absolutely nothing. I had a gastric emptying study last week. The tech told me that if all went well in the first part I would not have to stay for the second part. After the first part she told me she had to keep me and that it looked slow, so I don't actually know a percentage yet. She was encouraging me to walk the halls of the hospital while I waited. I've been reading up on gastroparesis and for the past three days have gone to an all liquid diet. This has helped tremendously with the symptoms. I lost ten lbs in a week and half before the diet switch so it's good to get some food even if it is liquid. Looking back, we (my husband and I) think this has been coming for a while. I've never tolerated the cruciferous veggie group (brussel sprouts, cauliflour, cabbage etc.) and have awful problems with beans and dried fruit. These all appear to be problems for gastroparesis sufferers as they are too tough for the stomach to break down. I've had a few days of real low feelings as it seems unfair to be saddled with celiac and gastroparesis, but am getting my head back on straight and if liquids and soups are my future then so be it. I am posting all this information thinking that it may provide some others help with their symptoms. My intense back pain threw a lot of the doctors, but it is definitely going hand in hand with my gastro disturbances but seems an uncommon symptom from what I've read on the net. I'm 43 years old. In my 20s I had multiple abdominal surgeries due to extensive endometriosis, and had an appendectomy, severing of nerves incuding a prescacreal neurecotmy because of the extent of the disease. I do wonder if the vagus nerve was damaged at some point during the surgeries as this is the nerve that controls the muscles to drive the food to where it needs to be! Or maybe there is a link between celiac and gastroparesis?

Bottom line thank you for this string of posts. It's always good to know you're not alone out there when fighting a health condition.

[climbmtwhitney]

BritChick,

I'm so VERY sorry you're suffering so much! I, too, had (hopefully not "have") gastroparesis. My gastric emptying test showed that it took just under 9 hours to digest a hard boiled egg. At it's worst 4 years ago I lived on mashed potatoes for 9 months. That seemed to be the one food I did the best with. Then the GP mysteriously disappeared as quickly as it appeared. It began to return a year ago, just before I was diagnosed with Celiac. But, since I've been gluten-free I haven't had any issues. I'm hoping the undiagnosed Celiac caused it for me, but not I'm not sure. Hmmmm. I went through hell with GP - it's always in the back of my mind that it can return.

The one drug that actually worked was Domperidone. It's not available in the US, but a pharmacy in Palo Alto, Ca compounded it for me. It worked beautifully from day 1. But, then, very unfortunately, I developed an allergic reaction to it 4 days later. My lips and tongue went numb. I had to stop taking it immediately. I'm guessing I'm a rare case though, so perhaps you should look into it. I noticed that another poster also mentioned Domperidone.

Also, other foods that worked well for me were pureed soups. I would make a veggie beef soup and puree it. It seemed to digest better that way. Didn't taste as good though! Also, I took Zofran for the nausea which helped a ton. And, I took Tramadol for the pain. That helped some, but not enough.

Hang in there. I do hope it gets better quickly for you. I know what you're going through. Completely not fun, huh?

Jillian

[ebetta]

Hello everyone,

I too have gastroparesis (diagnosed last November) and celiac disease (diagnosed last week after 5 years of testing). I was told the gastroparesis might resolve after following a gluten free diet, but it doesn't seem to be the case for all of you. I'd love to hear your stories. Have your gastroparesis symptoms gotten better after following a strict gluten free diet or do you find yourself in the same boat you were in day 1.

Thanks!!!

[Juliebove]

I have gastroparesis due to diabetes. I do not have celiac. My gastroenterologist told me to avoid high fiber, high fat and foods that are hard to digest when my stomach is acting up. White rice is my friend. Some days I eat little more than that. I can do chicken broth as well and rice pasta. I do eat gluten-free for the most part because of my daughter. Other foods that seem to do well for me are cottage cheese, canned green beans, carrots, applesauce, canned pears, potatoes, ground beef, chicken, tuna, and most beans. Some people don't do well with beans. Hummus is good and can be eaten with gluten-free pretezels, rice crackers or carrots. I don't do well with many meats such as steak or roast beef.

Everyone is different. Foods that work well for one person might not for another. But soups and other liquid foods generally work the best. I can't do fruit juice because of the diabetes but that can work well as can small amounts of regular soda or Gatorade.

[BritChick]

An update to my post regarding Gastroparesis from 2009.  After being diagnosed with Gastroparesis I was  unwilling to take the GI Dr prescribed reglan to treat due to the very scary potential side affects and learning this medication is often used as a last resort type of treatment.  I went to a natural medicine practitioner who has an extensive chemistry training background.  The natural med practitioner suspected my problems were due to food intolerance and inability to digest certain foods causing a complete imbalance and severe gallbladder like symptoms (vomiting, acid reflux, chest/back pain).  She was sure I was blood type A and should try vegetarianism and avoid high fat foods.  I had a blood test and I am type A and I did switch to a vegetarian diet.  It was a slow recovery but gradually I got better over six months.  I became a pescetarian (I eat fish and veg and non gluten grains and no meat).  Since 2010 I've felt really good most of the time.  There's been an occasional set back if I've eaten something greasy (french fries) but this diet plan has worked for me and I take no prescriptions.  I'm updating because over the Holidays I fell off the wagon and I am now paying the price.  I've eaten a lot of sweets/chocolates, over consumed wine, and the final straw was the very tiny portion of ham I thought I'd try.  The night I ate the ham I threw up and I've been struggling to feel better since - that was a week and half ago.  Ham night was a valuable lesson that I cannot cheat.  Meat seems to be totally off limits to me now.  Interestingly I can eat eggs and cheese, although I have to watch the amount of cheese.  I wanted to update in case this dietary info helps someone else out there with a diagnosis of gastroparesis.

[NoWheatGirl27]

Thank you for the update! I'm getting an upper and lower scope done at the end of the month, I've suspected a gluten intolerance or celiacs for about a year and a half and have been on a gluten free diet since then. I also eliminated dairy because it's not uncommon to develop lactose intolerance when you're celiac. And I felt a great deal better for a long time and then a few months ago I started to get gastroparesis and I suspected it was because I started adding dairy back into my diet and I just can't tolerate it. Recently, I had my DNA. Tested to see if I carry celiac genes and I do. When I was admitted into the hospital for gastroparesis like symptoms after two weeks, I lost 10 pounds and I'm already stick thin. I can't afford to lose the weight. They gave me morphine and sent me home with reglan after I told them I believed it was due to eating too much dairy and I suspect a lactose intolerance. I came to find out the reglan contains lactose and it just made me feel so tired, unmotivated and depressed, so I only took it sparingly to help with my nausea and digestive upset but I took it with a lactaid since I know I can't digest the lactose. I've been having D and C since November due to gastroparesis, mostly D. Here soon I'll get my upper and lower scopes done to see what's going on in there.... I haven't had gluten for over a year so I don't know if they will find villi damage, and there's no way I will eat 5 pieces of bread daily or dairy for two weeks before the test because I'm afraid of what will happen. Also I've found that raw vegetables irritate my gastroparesis and I try not to eat past 6pm. I plan on starting to take florajen and digest gold to help digest my food, in hopes that it helps because it seems like my digestive system just can't do it anymore. I'm 27, starting having celiac symptoms two months after my daughter was born... Use to have hyperthyroid issues until I quit the gluten, now they are normal thyroid levels. But I've had a few other big things wrong with my health in the past!! Trying not to let them get me down and trying to understand that people don't stay healthy forever and that this is a part of life with a positive attitude!! I hope you all get the answers you are looking for, take care and have a great start to your 2014 )))