Gastroparesis?

[Guest ~jules~]

When I had my endoscopy there was still food in my stomach although I hadn't eaten since 5pm the night before. So my gi doc. is having me go for a gastric emptying study. I guess the condition is called gastroparesis, its associated with diabetes and other things, I don't really know that much about it really. Does anyone here have this? Also he found a hiatul hernia, and in my bloodwork my liver enzymes were high Sheesh! One day your just peachy, then you start getting sick, one test leads to another and another finding. I'm about done with all this poking, proding, and probing.

[Rikki Tikki]

I don't know anything about it but just wanted to wish you well.

The good thing is that he has found problems before they gave you obvious symptoms.

[jenvan]

One of my friends has it. Go here, there is some good info on it: Open Original Shared Link

[ehrin]

I may be able to ease your fears a bit.

The way my GI doc dxed with celiac was during tessting for diabetic gastroparesis (see sig)

While I has having the upper endoscopy done he went a step further and took a biopsy of my intestine. So...I come to and he tells me that yes, my stomach was not emptying and gave me a script for Reglan - a really nasty medicine that's side effect is a parkinson's like symptom.

The next day I get a phone call that I need to come in ASAP and that exactly one week later he told me that I had the most abnormal biopsy (what does that mean anyway) that he's ever seen, my bloodwork was off the charts, and I have celiac disease - sweet.

Anyway...I started really researching the diabetic gastro diagnosis, becuase I just did not have any of the symptoms: naseau, always full, throwing up after eating...unable to eat because of these things. Not one. However, I had all the symptoms of celiac disease. I felt that was a strong diagnosis - the gatroparesis? Not so much. So I didn't take the Reglan - only if I had a very large meal in the beginning.

Fast forward to my 6 month appt. I say to my doc - listen, I don't buy this gastro diagnosis. I have no symptoms, I don't want to take that medicine and I think it was the Celiac disease somehow causing my stomach not to empty - who knows, I'm sure weirder things have happened. He looks at me and says - "I agree."

To not have one symptom - and those symptoms are pretty strong ones, it's not like you could overlook them, just does not warrent a diagnosis in my book - even if the test said so.

I'll have another upper endo done in a few more months (1 year dx anniversay is in Oct), just to confirm.

But doc and I believe there is no gastro.

Do you have symptoms???

Again, this isn't law or anything, but it certainly is something to think about!

Good Luck

Ehrin

[marciab]

I was diagnosed with this back in 2004. Endoscopy was positive, but the gastric emptying test was negative. I have a hiatal hernia too.

Mine was never that bad. I just couldn't eat a lot at one time.

FYI: Muscle relaxers and narcotics slow down your digestion and should be avoided.

Marcia

[jenvan]

When I had my endoscopy there was still food in my stomach although I hadn't eaten since 5pm the night before. So my gi doc. is having me go for a gastric emptying study. I guess the condition is called gastroparesis, its associated with diabetes and other things, I don't really know that much about it really. Does anyone here have this? Also he found a hiatul hernia, and in my bloodwork my liver enzymes were high Sheesh! One day your just peachy, then you start getting sick, one test leads to another and another finding. I'm about done with all this poking, proding, and probing.

oh and ps: high liver enzymes are very common in Celiacs before going on the diet, or being on it for a while.

[Guest ~jules~]

No, I really don't have any of the syptoms, thank god. I have before though, but I've had acid reflux for a few years also. I go monday morning for the test, so we'll see then. If it is in fact a side effect of celiac in some way, I'm not too sure I want any meds for it. I'm not too sure what he's doing about the enzymes being high yet, but it was nice to hear that this is also a sign of celiac. Frankly I'm tired of going to the doctor, can anyone second that! Thanks for the reply everyone. Julie

[Woody]

Hi I do not know if anyone else is checking on gastorparesis. I was diagnosed with this at the same time period as celiac, March of 2005. Did not not like the durgs my doctor perscribed. I have stayed away from fresh[uncooked vegetables]. Has anyone else come across these same systems? I am a 50 year old male.

Woody

email me rbtvcms13@aol.com

[bbleh6424]

I also have gastroparesis. Mine was also found with endoscopy after being diagnosised with celiac disease. Most people also have diabetes. I do not. I think it is nerve damage to the vagus nerve that inervates the stomach. I agree there seems to be one thing then another. I also have insulin resistance,high cholesterol, a blood clotting disorder that they haven't been able to diagnoseand I go through each day trying to have enough energy to get by. There has to be a better way.

With you in MO

[pinky]

i just found out that i have this too. i had a gastric emptying study due to my symptom complaints (bloating, stomachaches, extreme feelings of fullness). has there been any studies to show association btwn celiac and this disease? i can only find the association to diabetes...

[brenda07]

i have gastroparesis also they found mine with a stomach emptying test, about a year after i found out that i had celiac, i was not eating much, i had no energy, and i was never hungry, always felt full, stomach always hurt also, so they did the test and sure enough that was it, so they added that to the many other things i deal with on a daily basis, so of course they just say eat 5-6 small meals through out the day, which i find hard to do, but i'm trying, it doesn't make things easy though, good luck with everything. feel free to ask me any questions if you have any.

Bren

[Pgrin]

This is an interesting topic. In my own experience I feel like there's a relationship between gluten sensitivity and slow stomach emptying and I wish I could know for sure what's going on with my body! I had recently been undergoing testing for celiac disease. On the panel blood test I had high-ish IGG results, but was normal on everything else. My GP still suspected celiac given possible malabsorption problems, and recommended that I try the gluten-free diet for 6 weeks and see a GI specialist if it had a positive difference. Even though I was really skeptical, I felt wonderful on the gluten free diet, but in ways I didn't think I'd be affected - I felt really energetic within a few days, my mood improved, and constant pressure in my sinuses and upper-back went away (and this was so persistent that I didn't even know it was abnormal until it went away). The GI specialist felt this warranted the endoscopy (after a month back on gluten). It was during the endoscopy that the doctor discovered evidence of gastroparesis, but not celiac disease. I was prescribed Reglan right away, but didn't use it because of the potential side-effects, instead I just went back off gluten and started to feel great again. I was convinced by the doctor to try the Reglan and decided to do some self-experimentation with diets. I went back on gluten for two weeks while taking the Reglan and felt great, went off gluten while taking the Reglan and still felt great. When I ran out of Reglan I tried eating gluten again but I started to feel miserable so I cut back on the gluten. Now I find the best diet for me includes several small meals a day, lots of water, soups and smoothies, and greatly limiting my gluten intake, but not leaving it out entirely - basically, I just don't stress about cross-contamination anymore. So, definitely the Reglan made me feel great, but without it, it's only when I'm limiting my gluten intake that I really feel great. I feel as though the gastroparesis diagnosis fits with the stomach, GI, and malabsorption symptoms I've had - though I still can't explain the sinuses and exhaustion and such. I wish I knew whether my limitation of gluten is warranted or not and wonder if a gluten sensitivity is causing damage to the vagus nerve in the same way it damages the intestinal villi in celiac disease. Would love to hear your thoughts or more experiences.

[Amber100]

I was also diagnosed with gastroparesis and celiac and told to go on reglen but the side effects of the reglen for me were awful so I stopped the reglen and went gluten free but I don't feel as good as i think i should! i have a new GI doc now and he thinks i dont have celiac not because my antibodies were low and my gene test was +- but i definitly feel even worse when I eat gluten. Does anyone else have this problem with the gene thing and with not feeling great still? And are there other foods to watch out for?

[Condiala]

I was tested for gastroparesis long before I was tested for Celiac's. I have both, and I agree with the nerve damage theory (or at least that is is a probable cause). I have been on Reglan, and quit it for the same reasons as everyone else: dystonic reaction. I was also prescribed Promethazine, but quit that because it made me unable to sleep. I don't believe there have been enough studies on this, in fact, I'm not sure there have been any. However, cutting out gluten did not improve my emptying. It has improved the pain, but not the physical digestion.

I have never had the genetic test, though I really wish I had been, for curiousity's sake.

There are other foods to watch with gastroparesis. You might want to try limiting your intake of fiber and fat. It varies for people, but the standards are less than 8g fiber and less than 24g fat per day. Combining these two rules, not eating gluten, eating frequently and eating probiotics have increased my health greatly. I do still have problems, because my gastroparesis is really bad, but it's at least better.

[Juliebove]

It is presumed that I have it. The test done at my hospital uses eggs and I have a severe allergy. So given my symptoms and the lack of motility on my endospcopy, the gatroenterologist said he is going to assume that I do have it.

Mainly I have to watch what I eat. I can have breakfast and dinner, but no lunch. If dinner will be a long ways off, I might have a small snack. If I get up late, I just have one meal before dinner. I can't eat too much in the way of raw vegetables and I have to watch the meats like roast beef.

[2inoklahoma]

Gastroparesis-Well I noticed an old blog from Julie. A lot of time has passed since her post. I hope she found some answers. I just wanted to say that I was first diagnosed with Celiac and attended several meetings. I noticed that some had the classic symptoms and some didn't. When I started having trouble with casein (found in milk products) and most meat and wheat gluten I realized that there may be more that I didn't know. Come to find out I have Mast Cell Mediated Eosinophilic Gastroparesis. I had a lot of other symptoms other than the "Celiac" symptoms. If this is the case then it may not be celiac it may be gastroparesis. I am now enteral fed with a tube in my stomach wall and get special liquid food. It is a small pain to deal with but I am still working a regular schedule. Before that I thought I would have to quit work. If anyone wants to know the symptoms I had email me at 2inoklahoma@cox.net

I did not realize things like my headaches, fibromyalgia, narcolepsy, sleep apnea etc was from gastroparesis and cause by ALL FOOD.

The doctor takes a patient off of all food, does enteral feeding for a while then slowly starts adding it back.

Ignoring this will cause malabsorption of vitamins and minerals and can cause osteoporosis and problems with the heart to just name a few.

[2inoklahoma]

Most if not all of these symptoms go away with enteral feeding ran diluted

[AliB]

What is in the enteral food?

I ask that because so many do not recover on a gluten-free diet, even though they are intolerant of it. The problem is often far more complex than that and I firmly believe that gut dysbiosis caused by stress and trauma, or certain drugs including antibiotics that decimate the good gut flora and leave us vulnerable to infestation by pathogenic microbes/parasites, is far more likely to be the cause of the gluten and other food intolerances.

Many of us cannot process or digest carbs properly for whatever reason - and I suspect microbial again as some of the little beggars can actually switch off enzymes and, in the case of Helicobacter, dilute stomach acid and that will contribute to the cycle of damage. The lack of or diluted stomach acid prevents the esophageal sphincter closing properly, which contributes to GERD and also means that the correct enzymes are not triggered to released properly when the food enters the duodenum.

The more damaged the gut gets, the harder it is for it to digest the food. The more undigested food, particularly carbs, the more prolific the microbes get and the more damage - a spiralling cycle. The more damage and inflammation, the higher the gut perforation and the higher incidence of allergic or intolerance reactions as particles get through the gut wall into the bloodstream where they should not be.

The resulting constantly high-alert immune system will trigger defense reactions anywhere in the body - many of the microbes release known toxins in response to the food and they often mimic proteins in the body that the immune system will attack in its attempt to destroy the pathogens.

Quite a few of us on the forum, frustrated by our thwarted recovery on just gluten-free have started following the Specific Carbohydrate Diet (SCD) which removes the foods that feed the microbes and encourages gut 'reflorestation' with probiotic yogurt etc. It is similar to the Paleolithic Diet and concentrates just on basic foods, meat, fish, poultry, fruit, veg, nuts, honey and the yogurt, and removes anything processed, all grains and starches and sugar and most dairy products. We are all gradually healing.

You may well be experiencing a remission of your symptoms because the enteral feeding is providing you with nutrients and substances that are not contributing to the damage and are allowing the gut to gradually heal. Do you still drink, or is all your food directed via your tube?

If mast cells are involved then your body is obviously trying to protect itself. Did you ever try an elimination diet before you were diagnosed?

[2inoklahoma]

Enteral feeding is a medical food that is as simplified as possible. My Vivonex TEN is a powder similar to baby formula but without the whey lactose etc. It is ran over a period of 8-12 hours day or night. I choose day because I got up all night having to pee. My friend ran hers and night.

I do drink coffee now and some soda and tea. I rarely drink the soda. I have the capability to eat but usually don't. I did the elimination thing one thing at a time until there was absolutely nothing left and I was still sick, only drinking gluten free, lactose free slim fast trying to get my vitamins and eating peaches. I was still sick so I told the doctor that I was ready for the enteral food.

I had a colonoscopy and it didn't come up with any microbes just inflammation and blunting. I was healing fairly quick at first and felt like a million bucks then I started reintroducing food again slowly and wham! I was sick again. I also love food and have a house full of always eating people that makes it really hard.

I can not eat meat, any type of yogurt, honey, or nuts. I can have some "P" fruits. It just so happens that most of the lower allergy fruits start with "P". I can have peaches pealed, plums pealed, pears pealed. I can not have anything during high seasonal allergy times because I am already struggling at that point. The doctor wants me to try lamb and turkey and rice. NOTHING ON IT. Which makes it yucky and not worth eating. Taste is everything to me.

I have had a ruptured appendix and sepsis but I can see symptoms of this disease early on in my life that just got worse and worse as I aged. I am now 40. I had reached the point that I was vitamin deficient and getting very sick. I have osteopenia. I noticed that when I had an infection which I got frequently that one round of oral antibiotics was never enough due to malabsorption so I often would get an injection of antibiotic. I don't usually get an infection of any kind and I work as a Respiratory Therapist around some really sick people.

[2inoklahoma]

What is in the enteral food?

I ask that because so many do not recover on a gluten-free diet, even though they are intolerant of it. The problem is often far more complex than that and I firmly believe that gut dysbiosis caused by stress and trauma, or certain drugs including antibiotics that decimate the good gut flora and leave us vulnerable to infestation by pathogenic microbes/parasites, is far more likely to be the cause of the gluten and other food intolerances.

Many of us cannot process or digest carbs properly for whatever reason - and I suspect microbial again as some of the little beggars can actually switch off enzymes and, in the case of Helicobacter, dilute stomach acid and that will contribute to the cycle of damage. The lack of or diluted stomach acid prevents the esophageal sphincter closing properly, which contributes to GERD and also means that the correct enzymes are not triggered to released properly when the food enters the duodenum.

The more damaged the gut gets, the harder it is for it to digest the food. The more undigested food, particularly carbs, the more prolific the microbes get and the more damage - a spiralling cycle. The more damage and inflammation, the higher the gut perforation and the higher incidence of allergic or intolerance reactions as particles get through the gut wall into the bloodstream where they should not be.

The resulting constantly high-alert immune system will trigger defense reactions anywhere in the body - many of the microbes release known toxins in response to the food and they often mimic proteins in the body that the immune system will attack in its attempt to destroy the pathogens.

Quite a few of us on the forum, frustrated by our thwarted recovery on just gluten-free have started following the Specific Carbohydrate Diet (SCD) which removes the foods that feed the microbes and encourages gut 'reflorestation' with probiotic yogurt etc. It is similar to the Paleolithic Diet and concentrates just on basic foods, meat, fish, poultry, fruit, veg, nuts, honey and the yogurt, and removes anything processed, all grains and starches and sugar and most dairy products. We are all gradually healing.

You may well be experiencing a remission of your symptoms because the enteral feeding is providing you with nutrients and substances that are not contributing to the damage and are allowing the gut to gradually heal. Do you still drink, or is all your food directed via your tube?

If mast cells are involved then your body is obviously trying to protect itself. Did you ever try an elimination diet before you were diagnosed?

I first did a gluten free diet and was still sick. Then noticed a reaction to rice. Then meat next was dairy. I was down to peaches and gluten free lactose free slim fast. I was getting sicker and sicker. Still having reactions I went back to the doctor and asked for the enteral tube. I have been doing without any other food and only drinks allowed by the doctor. He has started reintroducing the least allergic foods. Rice, peaches peeled, plums peeled, pineapple (I can't eat them yet) blueberries. Next was lamb and turkey. Rice milk. Coffee and soda no cream or milk. Now I can eat potatoes plain. So far that is it. Email me at 2inoklahoma@cox.net if you have more questions or at least let me know there is a new post and I will respond.

[graphicsman1]

I was reading your posting on celiac.com. I was diagnosed with celiac in 2003 and did "ok" on the gluten-free diet and my chronic diarehha dissappeared...then in 2006 I was told I had mild colitis and cleared up the diareahha this time with the SCD diet. I am a true celiac. I can have 2 crumbs of gluten and I am puking in 1 hour.

In 2007, I began having sternum pain and at times like a stuck belch...the pain dissappeared from summer of '07 to spring of '08 then it was unbearable and I was then given a Gastric Emptying Study and told I had gastroparesis.

I do not have diabetes and I am unsure of the cause of my gastroparesis. I have begun wondering if I have some type of Eosinophilic disorder. I have read where there is a strong theory that some people with Eosinophilic problems also have "leaky gut syndrome".

I live in rural Mississippi, and need to see if I can get further diagnosis. I had a thriving career prior to gastroparesis. I want to see a specialist to get further clarity on my digestive problems.

I also have lots of reactions to medication.

My eyes look like a racoon and they have for years. I truly believe I have many, many allergy problems.

What kind of doctor should I see, an allergist or a better gastroenterologist? In some way I think my celiac disease has damaged my Vagus nerve causing my gastroparesis...I have also pondered if my allergies have damaged my digestive system in some way. There just seems to be a high number of people with both celiac and gastroparesis.

I look forward to hearing from you!

Kenny

Celiac, Gastroparesis, Microscopic Colitis

Most if not all of these symptoms go away with enteral feeding ran diluted

[graphicsman1]

I was reading your posting on celiac.com. I was diagnosed with celiac in 2003 and did "ok" on the gluten-free diet and my chronic diarehha dissappeared...then in 2006 I was told I had mild colitis and cleared up the diareahha this time with the SCD diet. I am a true celiac. I can have 2 crumbs of gluten and I am puking in 1 hour.

In 2007, I began having sternum pain and at times like a stuck belch...the pain dissappeared from summer of '07 to spring of '08 then it was unbearable and I was then given a Gastric Emptying Study and told I had gastroparesis.

I do not have diabetes and I am unsure of the cause of my gastroparesis. I have begun wondering if I have some type of Eosinophilic disorder. I have read where there is a strong theory that some people with Eosinophilic problems also have "leaky gut syndrome".

I live in rural Mississippi, and need to see if I can get further diagnosis. I had a thriving career prior to gastroparesis. I want to see a specialist to get further clarity on my digestive problems.

I also have lots of reactions to medication.

My eyes look like a racoon and they have for years. I truly believe I have many, many allergy problems.

What kind of doctor should I see, an allergist or a better gastroenterologist? In some way I think my celiac disease has damaged my Vagus nerve causing my gastroparesis...I have also pondered if my allergies have damaged my digestive system in some way. There just seems to be a high number of people with both celiac and gastroparesis.

I look forward to hearing from you! Please feel free to email me at graphicsman1@hotmail.com

Kenny

Celiac, Gastroparesis, Microscopic Colitis

[RollingAlong]

The Bernstein Diabetes forum also has discussion on Gastroparesis. He believes the nerve damage can be reversed with time and recommends supplements to assist with this.

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