Anyone been dxd with gastroparesis?

Question

Does anyone on this board have gastroparesis?  If so, what are your symptoms and what were your gastric emptying scan results (mild, moderate, severe/percentage emptied after two hours)?  Also, do you have any other condition that it is considered part of/sometimes seen with, such as diabetes, scleraderma, multiple sclerosis, etc.?  Anyone that has gastroparesis dxd with other autonomic dysfunction?  Also, what kind of diet are you on and does it help alleviate symptoms?  Thanks.

AngelamIr · Answer

Hi. 

I just recently got diagnosed with gastroparesis. I have only had these symptoms for three months. It started with rice getting stuck in my throat  ,   .  Nausea and decreased appetite. I have other symptoms which I feel are related.  Random twitching all over, ear fullness which ent says I have tmj and inflammation in my left ear. Supposedly I have tendonitis in my right arm which comes and goes.  When I was drinking a lot of water , I was peeing often esp in the morning.  All my blood wok is normal.  Been to a rheumatologist. Can't find anything.  Also I wake up with dry gums. Did a blood test for sjorgrens ..normal. Dentist says I'm making plenty of saliva.  Seeing a neurologist now.  My exam was normal.  Doing an emg next.  What were your neuro symptoms?   I am very nervous. Also gastric emptying test said severe gp.   I don't vomit but I have lost some weight and forcing myself to eat 1500 calories now.    I started taking aciphex before I was diagnosed and seems to be helping. Less burping.  I tske it once a day before dinner.

Bernie14 · Answer

Has anyone had total body rash reaction prior to initil symptoms?

Has anyone made improvements discovering associatied autoimmune disease?

How have people with devices fared?

My daughter has her second pacemaker and she is still suffering daily.  Strnge allergic reaction occured several weeks ago that occurred prior to her initial symptoms, wondering if allergies play a large role in this - as wel as the autoimmune component. 

Has anyone had large panel urine, fecal and blood work to discover degree of toxicity in body.  I am on a track based on another's exploration of detoxification.  I have been told that viruses and bateria can hibernate in your system for years.

kunoichi · Answer

I've got Gastroparesis within the last two months, it came on all of a sudden out of the blue, but I really noticed the day after I think it started when I tried to eat vindaloo for dinner. The pain was unbearable and, unlike many others, I did not feel nauseous and could not throw up. The pain lasted well into the next day. It eventually went away, and the first doctor I went to just gave me antacid tablets.

After they did nothing, I went to my normal GP who sent me to a Gastroenterologist for tests. These tests said that I had an inflamed stomach, but no problems from the biopsies, and I wasn't a coeliac. But after the emptying study, I was diagnosed with Gastroparesis. 

"The gastric half emptying time for solids is 9811 minutes compared with the expected normal of 90 minutes and the half emptying time for liquids is 333 minutes compared with the expected normal of 77 +/- 10 minutes."

I'm so glad that I don't feel sick and don't vomit and don't have reflux. I just feel full after eating a little. It's annoying but not bad. Though I haven't dared to go back to my beloved spicy meals ...

I suspect that it's related to my Graves Disease, which I was diagnosed with about five years ago. I've also picked up Allergies within the past two years. And a little Eczema on my knuckles after getting Gastroparesis.

I think that they're all related...

jaynelon · Answer

I am a new member and was reading your post regarding GP -- I have had it for 2 years now and it is still not under control.  I am currently under care at the University of Michigan but am thinking of going to the Mayo Clinic or the Cleveland Clinic but am looking for the name of someone who is good with GP.

I have lost 95 pounds and am on a feeding tube now.  I just got out of the hosptial after 8 days.  I had a head injury 2 years before my GP diagnosis but no one is sure if there is a connection or not.

Please let me know if anyone has had a good experience at cleveland or mayo and if so who they saw -- thanks Much.

lkelio · Answer

I am a 38 year old late diagnosed type one diabetic and I have Gastroporesis and I find finding foods you can tollerate is what I did I may have a small amount of choices but i suffer only mildly from day to day verses emense pain and vommitting everytime I ate. I also have Hashimotos and hypothyroid and my gastroporesis was caused by nerve damage because i was not diagnosed properly with diabetes so the high sugars that went undetected and undertreated ultimatly damaged some nerves to my stomache and intestines so I have dealt with gastroporieses for 10 years they say eyrethromyacin or e-myacin has made good progress I use to use bentyl for bad ccramps but mostly I use reglan for nausea and ativan for chronic nausea by helping me relax and then Im very carefull about what I eat and will lay at a reclined angle so to strech my stomache out and I find its helped me through the last ten years it should get me 30 more

Erica7 · Answer

for the past three months i have been going back and forth to the hospital, my pcp, GI doctor and everytime they would have a different diagnosis, first it was food poisining, then it was low potassium, then kidney stones, then they decided to check my gall bladder. right now he's leaning towards gastroporesis. my GI doctor ordered a scope and discovered that i have acid reflux disease and put me on nexium, i was still getting sick so he put me on reglan. 

That worked for a little while, then it was the same thing all over again, stomach spasms, nausea and vomiting, fatigue, so he had me double the dose of Reglan. BAD IDEA! i had an adverse reaction to it and my jaw was spasming like crazy and i had no control over it, i felt like my mouth was going to rip open, and then my jaw locked shut and my eyes started fluttering. That was my most recent trip to the ER.

 i just had an upper GI and lower bowel scan this morning, another test to add to the list, which includes; a CAT scan, a ultrasound, an MRI, a scope, and a 2 hr. gastric emptying scan.the 2 hr. scan showed a delay, I have the 4 hr. one in oct.

i have just been prescribed erythromycin which i will be starting tomorrow. i feel better not taking the reglan, not having the  "gotta go's" (for those of u who have experienced them, u know what i mean, never being happy wherever u go or do, u always have to keep moving. i had no idea this was an adverse reaction until the nurse told me) i especially don't miss the constant doped up feeling and heavy eyes.

i'm just scared of the symptoms and how bad they get when i'm not properly medicated. it's gotten so bad that i have been put on a temp. leave of absence at work. i cannot continue like this and i was just hoping to see if anybody had any good advice. Thanks for listening

bnlgirll · Answer

I have looked through all of these comments to try and help someone with this problem. I had a gastric empty scan was horrible at t-1/2 life gastric emptying at 60-105 min. I was 1/2 at 220 mins and they stopped the scan. My dr said I had severe gastroparesis. I couldn't eat nor drink and keep it down. I was put on phenergan,zoran,and cytotec. With no results. I was so sick they put me on IV nutrition. I finally met a dr that did gastric pacemakers and got transfred to that hospital. After some test they did the surgery and Now I take Phenergan, Zofran as needed,cytotec,colace, and I get botox in my stomach every 3 months and finally I can eat and drink. I also have many other problems with low bp, heat intolorace,total gut dismotility,thyroid problems, Nereve pain,ectopic atrial tachycardia and then Sick sinus syndrome. I went to the best neurologist in floirda and he said I have colenergic neuropathy. So now I am in the search for a better dr. But if you have any questions about gastroparesis please let me know and I would love to try and help. Thanks

amygo · Answer

My GP actually improved when I got off of birth control. When I started on BC I had a host of problems crop up, and I didn't really feel sane again until it was out of my system over a year later. My doctors said GP couldn't be related to the birth control, but what a coincidence! I've always been super hormone sensitive.\

You'll have to let me know how you feel once you're off the hormones. Brave choice though! Good for you! I know my husband was stressed when I finally told him that I wouldn't take birth control anymore, but it's been a great choice for both of us - and condoms have worked fine so far.

So do overall hormone imbalances affect GP? I've been researching and found that I have most of the symptoms of PCOS. How have you guys gotten your docs to send you to endocrinologists?

amygo · Answer

It's good to see I'm not alone with my GP. My doctor ruled out the major causes (celiac, diabetes, etc) then kept having me come in for useless appointments until I just canceled. He said basically there's nothing I can do that will really help, since I was on Reglan for a while and it made me unable to get out of bed and very depressed - I spent probably two months miserable before I finally realized that the meds were making it worse. Since then I've switched to mostly small meals (reasonable sized meals make me sick for hours).

I'm still having real fatigue (nothing near as bad as with Reglan), and the GP has also caused severe heartburn. Things were a bit better in winter, but now that it's summer again, I'm feeling bad, and I need to make some changes.

So I'm trying to manage my weight (I could lose 10-15 pounds), manage my heartburn, and stay away from fat and fiber, while only eating small meals and trying to save money and time. For someone who has never been extremely diet-conscious, this has been an insurmountable challenge for me. What do you guys eat for snacks and small meals? How do you manage your diet while eating out socially? What do you do eat period? Can you recommend a cookbook maybe?

Eating has been the really killer thing because I have a hell of a sweet tooth, I'm lactose intolerant, and soy makes me sick too (who knows why?). I'm also not super rich, and I can't manage to keep things fresh in the fridge! Help!

Krista24 · Answer

My boyfriend was just told he has Gastroparesis. And we're not sure what kind of foods he should be eating that are easily digestable. Does anyone know?

pazco · Answer

Well.... I was up-until a month ago a health 24 year old. About a month ago I started with a pain (felt like cramps sometimes) on the lower left area of my abdomen...lower left pelvic area........I took prilosec for about 2 weeks everyday and it made it feel better also i notice bowel change i went from having two bowel movements to maybe one day or nothing at all. I started taking fiber tablets and one day they caused me a lot of diahrrea. Went to the emergency room and was given Lomotil and was told I maybe had IBS. The next day I felt better and at night I had a big chicken philly sandwich , i also ate some chocolate and almost immediately felt nausea....i decided NOT to throw up and felt nauseus for days.....Went to see a GI on wednesday of that week he thought I had ghiardia (funny i haven't left the country in a yr) Gave me Tindamax which I took ...the next day I felt great but that weekend I felt very weak (specially bad in the morning)........So bad and so weak that wednesday i was in another ER ROOM.....I had blood test done, cat scan everything came back NORMAL (The most horrible word in the dictionary).....went to the GI back on friday were he announced that the result of the stool samples were negative for ghiardia and that he didnt know what was wrong with me (YES A DOCTOR TOLD ME THIS).......After that the weekend i felt a little better (all week all i had to eat was chicken, rice and apple sauce) the week after my stool improved and felt great.............................Well happiness only lasted about a week and a half (week in which i went back to sodas, and bad food given that my doc said it had been a viral gastroenteritis) ......the night the it all came back again was wednesday i was at a friends party and had paella, sangria and a cake, i went outside got into a fight with the NEW boyfriend and all the sudden NAUSEA again..........and this time it last 5 days!!! at the end of 5 day i was dry heaving and was immeditaly addmitted into the hospital were they did a colonoscopy and endoscopy ALL CAME BACK NORMAL...........after 3 days i was sent home with nexuim and bentyl (for IBS RIGHT?)........its been two weeks and i stopped taking nexuim and bentyl becasue i saw no effect ...what i have notices is that I am extremly full even after small meals and that i do not go to the bathroom at all (for a while i was up at 3AM going to the bathroom to very small stools) ........my pain is still there and I am so SCARED the nausea will be back :( ...now i am thinking i might be depressed because it so hard to get up in the morning and it SO HARD TO EXPLAIN to people................my NEW GI thinks i might be processing food to slow and my internal medicine doctor gave me a prescription for reglan...........and in case nothing it would just be IBS.......................How can somebody go from being PERFECT to this????????

I guess im not the only one and i had to share with you guys!!

Annie62 · Answer

pazco,

I am not a doctor, just someone talking from experience, but the left lower quadrant pain doesn't sound much like gastroparesis (if female, possibly ovarian pain?; or diverticulitis--but you said your colonoscopy was normal).  

The fullness after eating and the nausea (and even constipation) could be due to gastroparesis.  If your doctor thinks you might have it you should give the Reglan a fair try to see if it works; if you can't tolerate it there are other drugs used for GP.  The best test to diagnosis GP is a gastric emptying scan.  It tracks the food with the radioisotope in it to see how quickly food leaves your stomach.

Annie62 · Answer

Annie211,

I read your above post and your gastric empyting scan results sound like they might be similar to mine (I emptied 7.9% at 90 minutes; 33.7% at two hours).  I was diagnosed with severe gastroparesis last year. How much did you empty at 2 hours?  I have similar symptoms-abdominal pain, epigastric/chest pain from chronic reflux, and significant bloating after eating.  I also have an autoimmune disease-(neurologic) just dxd a few months ago after 17 years of symptoms and going undiagnosed.  

Gastroparesis is seen with a number of autoimmune diseases.  I don't know if you know much about it, but it is usually caused by damage to the vagus nerve/autonomic neuropathy, especially when it is chronic and severe.  I've probably read every article on the net about it.

I'm curious, did your Zelnorm (for the presumed IBS) help with your symptoms of bloating and pain?  Also, did your symptoms get worse when you had to go off the Zelnorm (if you are here in the US)?  Do you have nausea and vomiting? 

If you have other symptoms in addition to the possible gastroparesis, I would continue to pursue a diagnosis and read as much as you can to see if there is a link been your GP and your other symptoms.  That's what I did after I was dxd with the GP; I went on the internet and started to read about it and I knew immediately from what I read that it was connected to my other neurologic symptoms-and four months later I FINALLY got a dx.

micaela27 · Answer

annie, i'm waiting on the results from my celiac panel test right now, actually!  i should get them in the next few days.  i also have Hashimoto's thyroiditis, which is another type of autoimmune disease of the thyroid.  definitely get tested for everything you can!  that's the only way to get conclusive answers, even if it's only for the purpose of ruling out possible other issues.  i hope you get to the bottom of this!

Annie211 · Answer

I've been suffering for years with what I was told was IBS...tried high fiber, lots of H2O, zelnorm, etc., etc.  Recently saw a new GI, and told him of my feelings of fullness right after eating a small meal, the bloating and constipation.  Had a gastric emptying scan done, and after 90 minutes, had only emptied 9.5% of my stomach!!!  Basically nothing!!  GI ordered an endoscopy to check for blockage.. still waiting to get a call from surgical center to schedule it.  Also have Raynaud's Syndrome, and had some blood work done over the past 6 mos to check for autoimmune diseases..so I'm not backing down now, and want to get to the bottom of this.

micaela27 · Answer

hahahahaha!!  i haven't finished reading what you wrote, but i had to comment... a "come to jesus" meeting is just a phrase used to describe a serious sit-down convo that is usually one person saying "ok listen, things have GOTTA change around here!"

it actually has nothing to do with christianity... it's just a silly term that i love to use and heard from someone else awhile back :)

i AM a christian, though, so it made it all that funnier to read :)  i can just imagine what images were floating through your brain...  me with test results in one hand, Bible in another...  holy rollin' through the doctor's waiting lobby... :)

Annie62 · Answer

Hi Micaela,

I never posted on the gastroent. forum before but thought I would see if there was anyone out there who had gastroparesis and compare notes on what their symptoms were/what effect it has on their every-day life.  Thanks for sharing your story with me.  It's always good to hear from someone who knows what you are talking about and has similar issues.  

I see you were just dxd a month ago with the GP and also have Hashimoto's as well.  I was worked up for Hashimoto's in the past, so I am a little familiar with thyroid disease from the past reading I've done.  If I were you I would type in GP and hypothyroidism and see what you come up with to see if there is an increased incidence of GP seen in people with hypothyroidism.  GP is seen in a number of autoimmune diseases-I've read extensively on it (type 1 diabetes, scleraderma, MS, Sjogren's, etc.)-but I don't know if Hashimoto's is one of them.  By the way, do you have any (other) symptoms from your Hashimoto's?  It sounds like they found it incidentally in blood work after your GP dx. 

I was dxd with severe gastroparesis in July/August of last year.  I have had bloating, stomach and chest pain for years, but I have so many other things going on (mostly neurological), and it never occurred to me that the gastro/esophageal symptoms were related to my other neuro symptoms.  I figured it was because I had gained a significant amount of weight, was overeating most of the time (in spite of the full/sick feeling), and that that was causing me to be in pain and feel full/bloated all the time, feeling like my stomach was shoved up into my chest and making it difficult to even breathe at times.  Of course my overeating/weight gain/bad eating habits *were*  making my (as yet undiagnosed) GP worse, but they weren't the cause.  I was on b.i.d. AcipHex but was still having significant reflux problems, waking up with a sore throat every morning, constant burning in my chest/epigastric region and having severe pain/cramps at times.  I got sent for an EGD and there was food residue in my stomach after not eating for over 17 hours.  I also was dxd with gastritis/esophagitis, as you were, which was expected.  The gastro told me when I woke up I had gastroparesis-I didn't even know what that was (I thought they were going to find a large hiatal hernia).  He sent me for a gastric emptying scan and I was subsequently dxd with severe gastroparesis.  When I got home I went on the internet and one of the first things I read was that it was caused by autonomic neuropathy (damage to the vagus nerve, etc.), and I knew immediately that it was connected to all my other neurologic symptoms-which had been written off as psychosomatic by my doctors for 13 years.  The very first symptoms I had were back in '90 (an isolated event), but I have felt sick since '94 after a viral infection and have been purusing a dx ever since then.  I spent 13 years in a living hell trying to convince doctors/neurologists/my PCP that I was sick, so the GP dx was a big turning point for me.  To make a long story short, I got sent up to Mayo Clinic last December and again in March and was diagnosed with autoimmune autonomic neuropathy.  I was worked up for MS and had tons of blood work for antibodies done, but they still can't find the cause of my autonomic neuropathy-whether it is a primary or secondary to another autoimmune disease.  I also might have something going on with my parathyroid gland, as I had a mildly elevated calcium level, but I have to wait to find a new PCP who will retest my calcium, as my PCP just dumped me after returning from Mayo (he said I didn't "trust" him, which was a totally bogus reason, but I won't get into that).  I just posted over on the endocrine/thryoid forum for the first time about a week ago as well.  

So you got dxd with Hashimoto's after the GP dx?  Why are you having cortisol levels done (do they also suspect Cushing's?).  Does your endocrinologist (if you have one) think your GP might be related to the Hashimoto's?

I only emptied 33% at two hours (I had a two-hour test), so I didn't even have a half-time as the test wasn't long enough to record one.  I knew mine was severe before they even did the emptying scan, though, because of the food being in my stomach after 17 hours of not eating, which the gastroent. had to suction out during the EGD.  

My gastroent. told me to eat low fat and eat small meals often, etc., but he never told me to go on a low-fiber diet.  However, I have read that low-fiber is best with GP because low-fiber foods are more readily digestible (as with low fat foods).  I have since lost most of the weight I gained, though still have a ways to go (I had started on a mostly vegan organic diet about a year before my GP dx, so I have no intention of eating low fiber even with severe gastroparesis), because after I had finally started to eat healthy a year later I was told I had GP.  High-fiber (as you well know since you are a nutritionist) is healthier in general, and if I have to I will start putting my fruits and veggies in a blender (just got a good one for Christmas) and pureeing my foods and go on a soft foods/liquid diet.  I'm like you, I have always eaten a lot of fruits and veggies (I've been a vegetarian since I was 8 years old), but I also used to eat a lot of junk (chips, ice cream, tons of cheese, etc.).  I eat a lot of soup now-every day for lunch.  I buy the organic Amy's, Wolfgang Puck, Muir Glen and Imagine, and when they are on sale I stock up on them.  They have a lot of nutrition and are easy on the stomach (except the Fire Roasted Vegetable one by Amy's-that's like pouring acid down your esophagus-and naturally that is my favorite one :).  So, I try to eat low fat now but I continue to eat high-fiber and will as long as I am able to tolerate it.  

You said you have no nausea or vomiting from the GP.  I have never thrown up (to my surprise!), either, but I have had dry heaves and have occasional nausea.  My symptoms are mostly pain and bloating.  I have constant low-level pain that is always present, and sometimes significant pain.  It makes it difficult to sleep.

You said your GP wasn't linked to a virus, but are you sure about that?  I don't know when my GP started for sure, but I know that my symptoms came on some time after a serious bacterial intestinal infection I had in '99, which also triggered off other new neuro symptoms in me.  Sometimes postviral GP resolves and sometimes it does not.  GP is caused by autonomic neuropathy (usually), although transient GP can be caused by drugs, etc., and there are many diseases that cause autonomic dysfunction, including celiac disease, which you mentioned you wanted to be tested for.  

If you have started to feel better after having the GP symptoms for only two months, do you think it is improving on its own?  That is possible, especially in light of your only having symptoms for two months.  It also might be just normal variation from day to day in your symptoms.  I know one day I feel better than the next depending on what I eat, how much I eat, if I eat late, etc.  I don't expect mine to get any better (I know I have had it for years) in spite of being dxd 9 months ago, and if anything mine is going to get even worse in light of my overall diagnosis of autonomic dysfunction. 

You said you were on Reglan for a couple days.  It sounds like it didn't agree with you at all.  I have never taken that.  I am on domperidone (get it from Canada) and was on Zelnorm, too, but they took it off the market, so now I only have the one drug.  It helps some, but not enough.  I still have significant symptoms.  I don't have any side effects from the domperidone, though, so you might want to consider that/ask your gasto about that drug to see if it might help you.  Sometimes with mild GP diet changes alone are sufficient, but if your symptoms persist, then I would consider giving it a try.  I get mine from CanadaDrugs.com since it is not available in the US yet, but it is only about 30 dollars a month.  

If you have any questions feel free to ask as well.  It's always interesting to hear from someone with the same problem, even though the cause of our GP is probably different.  I have been reading everything I could find on autoimmune diseases for 10 years (since I have had the internet) trying to figure out what was causing all my symptoms (since the doctors, until just recently, didn't believe I was actually sick), so I know quite a bit for a layperson about autoimmune disease in general.

Annie62 · Answer

Hi Micaela,

I also had my cortisol level tested (urine cortisol)-to see if it was elevated/Cushing's disease a few years back, but mine was normal.  Maybe that is what your endocrin. is testing you for.  Don't know why he would be testing you for that, though, in conjunction with gastroparesis.  I assume you and your endocinologist are evangelical Christians if you are having a "Come to Jesus" meeting with him.  I've never heard of anyone doing that with a doctor before, but I guess it is something you are both doing in the hopes of better communication.  Maybe my PCP (who just dumped me) and I should have had one of those meetings...it certainly would have put a different perspective on things.  (I am not an evangelical Christian but have two sisters who are).  

If your gastroparesis is mild per testing it might resolve on its own.  They didn't find any damage with my vagus nerve or do any test on my vagus nerve. They just know by virtue of my having severe gastroparesis that I have autonomic neuropathy-because that is what causes chronic severe gastroparesis.  I also had other testing done that supports I have autonomic neuropathy/dysfunction.  It actually wasn't simple to figure out what the cause of all my symptoms was--my neurologic symptoms started 17 years ago and I just got a diagnosis in December--but the GP diagnosis led to my finally being taken seriously with regards to my other ongoing symptoms.

I do cook veggies well-done sometimes, but then one is also cooking out the vitamins, and I hate to overcook them for that reason.  I have started to peel potatoes when I grill them, something I didn't use to do since the skins have a lot of nutrients.  I still have pain even when I peel them, though, so I am not sure how much it actually helps.  I eat cooked carrots and make hummus often, but I never tried dipping the carrots in the hummus--I'll have to try that some time.  Most vegetables are good in hummus, though.  I know berries are on the list of foods that are hard to digest, and I don't eat them very often due to the expense of organic berries, but when I can get them on sale I still eat them.  They are really healthful and I have never noticed any difference in the amount of pain/bloating that I have after eating berries.  I have a low level of pain all the time.  I might still try going on a liquid/soft food diet for a week and see if it makes a difference in my pain level, but so far I haven't had the discipline to do it.  

As far as the mono, I don't think you would develop complications (GP) 3 1/2 years later; I think it would be sooner than that if it was post-viral from the mono--unless the symptoms were so mild in the beginning that you didn't really notice them.  When I had what I believe were autoimmune responses after viral and bacterial infections in the past (colds, intestinal infection, etc.), it was usually immediate or within weeks that I noticed onset of symptoms, but sometimes symptoms are insidious and not acute.  I'm not sure when my GP started, but I think it might have been after the bacterial intestinal infection I had back in '99.  It might have started out mild, became moderate and then got severe--I really dont know for sure.  I have a lot of other stuff going on and sometimes it is hard to sort through it all.

The GP itself can cause gastritis--all that acid trying to grind up the food that your stomach muscles (that don't work so well) can't grind up.  Also, having stomach full of food all the time promotes reflux/GERD and contributes to the esophagitis.  That's why I try not to eat past dinner time, though I still have reflux during the night even when I don't eat past 6 PM.  My esophagitis was worse than my gastritis on endoscopy.  I also had a small hiatal hernia.  I read it is only a problem usually when it is large; small ones are common. 

Regarding the domperidone, if you have mild gastroparesis you might not need to be on drugs.  If your GP ever gets worse then you might want to consider it.  

I never read that birth contol pills can cause gastroparesis, but you never know.  It is made of hormones and hormones can play a roll in emptying of the stomach as well as other neurologic/neuromuscular functions.

micaela27 · Answer

to answer/comment on a few of your points:

i don't attribute any of my symptoms from the GP to my Hashi's...  i do have dry skin right now, and i get tired at points (off and on) but those two symptoms could be attributed to my borderline and occasional dehydration (liquids tend to make me full very quickly) so i wouldn't be so quick to assume the Hashi's is causing that.  i have no other classic symptoms and no goiter.  i plan on doing a lot of internet research though, and if there is a link, i will find it!

my new endocrinologist is doing the cortisol workup for reasons he didn't really fully explain to me (on a related note: he and i are going to have a Come to Jesus meeting on friday about my need for better communication from him at ALL future appointments) so i can't answer that one now!  i get it done friday morning, though, so i will have answers by early next week, probably, if not right away.  i don't really know how long the processing time is for this test.

my endo didn't indicate that there was an obvious or direct link between the two conditions.  he said he wouldn't technically rule it out, but that it wasn't likely.  i think that's the point at which he began talking about the cortisol testing.

for me, the low fiber aspect has been hardest as well.  i do eat meats and eggs, but i love my produce a lot!!  to keep the fiber more tummy friendly, try cooking the veggies well before you eat them.  i can't tell you how many cooked baby carrots i've dipped in hummus over the past few weeks!  it's a paradox that i don't quite enjoy, but fiber has an opposite effect in the stomach from the intestines:  it serves to slow down gastric emptying in the stomach, but speeds up digestion in the intestines.  go figure!  i have been avoiding berries (my favorite addition to lowfat yogurt... i hated giving those up!) but i may add them back in gradually.  i have found my wheat bread is relatively low in fiber, so i still can eat that.  the skins on fruits and veggies (pears, potatoes, apples, etc) is where a bulk portion of fiber is located, so try peeling your produce as well.  it seems as though my body rebels in a swifter and meaner way when i eat a high fat food rather than a higher fiber food.  if i had to choose, i too would compromise on the fiber and stay vigilant on the fat.

damage to your vagus nerve certainly will cause the GP, so i'm not surprised they found something wrong in that part of your body.  i wish my answers were that simple.  my current plan is to get the cortisol testing, ask for celiac's testing at my appt next week with my GI, and keep on researching!

i was healthy as a horse when my symptoms first started, and during the first week i had them i took acetaminophen for a few days to help with period cramps.  the last time i was truly sick was in 2003 when i had Mono... but it seems far fetched to imagine i'd develop complications 3.5 years later from that, right?  I had taken no meds, wasn't on any drugs, wasn't sick...  nothing.  so if it indeed was a viral thing, it passed through me unnoticed, because i had no symptoms.  what else causes gastritis besides NSAIDs?  maybe whatever caused that also caused my GP.  my endoscopy showed a hiatal hernia but it's small and my GI doctor wasn't worried about it.

the Domperidone is something i have already discussed with my GI and it's one of those "if we have to use it, we will" options that i'm not exploring at this moment.  my symptoms are defintiely better than they used to be, though i'd say they've plateaued the past two or three weeks.  i chose to come off birth control recently as well (which ads a whole host of different potential withdrawl side effects to the equation) on the off chance that it may affect my stomach in a positive way.  i realize it's a pipe dream, but a girl's gotta cling to something, right??!

Annie62 · Answer

One more thing, I just typed in gastroparesis and hypothyroidism and there is a plethora of information linking the two diseases.  Now that I think of it, hypothyroidism was one of the things that I read about in the past that is seen with gastroparesis/a cause of GP.  I imagine that is because hypothyroidism slows down metabolism; I doubt in your case it is due to actual nerve damage in the stomach--but who knows.

micaela27 · Answer

oh honey, i'm glad to see you on here!  i just recently was diagnosed with gastroparesis (about a month ago) and have been struggling to figure out what to do with myself and my diagnosis in the aftermath.

to answer your questions:
i first went to a GI doctor because of problems with fullness after eating and weight loss as a result of not being able to eat as much food.  he ordered an abdominal ultrasound and bloodwork, including TSH.  the ultrasound came back normal (they found a small, benign cyst on one of my kidneys, but that's totally unrelated) and i was told to go see a urologist.  well... urologist ordered a CT scan or my abdomen and pelvis with barium and iodine contrast, an oblique xray of my kidneys, and a urine culture and other urine work.  all came back normal.  meanwhile, my TSH came back slightly high, indicating i was a bit hypothyroid.  i went to see a different GI doctor and he ordered a gastric emptying scan and an endoscopy.  endoscopy came back as me having slight gastritis in my stomach (common in people who take NSAIDS, which i hadn't in a long time) and having presence of candida yeast in my throat (common in autoimmune diseases, and with people on antibiotics, which i also hadn't taken in years and years).  the doctor was worried enough about the candida to order another round of bloodwork, but this time for detailed thyroid and immune testing.  my thyroid antibodies came back sky high (but my TSH was normal this time, strangely enough) and i was diagnosed with Hashimoto's Thyroiditis (an autoimmune disease...  helps to explain the presence of the yeast!).  i am now waiting for the next round of testing (cortisol and another bout of bloodwork for thyroid to check it again).

so for the gastro... my gastric emptying scan results came back that i had emptied 50% of my contents (they gave me the egg whites) by 45 minutes.  according to the report, i technically fall under "normal emptying pattern" but according to my GI, this is slower than average and i was diagnosed as having a mild form of GP as a result of the emptying scan.  he told me to go on a low fat, low fiber diet, which has been hard for me.  i am a nutritionist and LOVE eating fruits and vegetables, so curbing this desire is going against every fiber (pun intended!) of my being.  it sucks, bottomline, but it definitely helps me.  as vigilant of a label-reader as i used to be, i have become even more so lately, counting the grams of fat and fiber in each serving.

in my case, i do not experience nausea and vomiting like so many other people do.  for this, i count my blessings.  i also do not have any of the classic "sister illnesses" to GP like diabetes or viral infections.  mine is purely idiopathic...  that is, unless further testing indicates i have a link between my thyroid issues and my stomach issues.  the frustrating part for me is that my symptoms came one day out of NOWHERE.  nowhere.  i had eaten breakfast and suddenly i felt overwhelmingly full and gross and i slept for 3 hours and woke up feeling fine.  that was the beginning of it, and that was over 2 months ago now.  i had an impeccable health record, i ate better than almost anyone i knew, i excercised regularly, i had no history of gastro issues in my family, no signs of diabetes, was on no medications other than birth control, and hadn't taken any painkillers that recently.

my doctor put me on Reglan a few weeks ago, which lasted about a day and a half before i called him up to say i was shaky and couldn't think straight and felt like i was on drugs.  he told me to stop the pills and i was SO glad to finally feel mentally competent again!  the Reglan messed me up, though it's one of the most common motility drugs prescribed for GP.

my symptoms have changed a bit over the course of this whole process.  i used to feel a lot worse, used to sleep a lot during the day to make the fullness feeling go away.  i was eating very little and lost over 10 pounds (and at 5'7'' and 133 pounds i wasn't at all overweight to begin with!) and was genuinely miserable.  i don't know what made me start feeling better, as i noticed improvement before i started in on my low fat/fiber diet, but i can assure you the diet works well for me.  i tried to eat chinese this weekend and it was horrible.  i was full for 24 hours and felt yucky the whole time.  lesson learned!  no more chinese :)

so my journey definitely isn't over.  i refuse to believe that my GP came out of the blue and will pursue the thyroid side of this mess for awhile to see if there is any connection.  until i get answers, i'll keep eating my little bites every 45 minutes of my pretzels, applesauce, toast, lowfat yogurt and cooked carrots (all tummy-friendly foods for me) and keep on truckin.  

if i forgot anything, ask away and i'll be happy to share!

Anyone been dxd with gastroparesis?

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