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westernmass

Could This Be Gastroparesis?

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I'm not asking anybody to attempt to diagnose me! I finally have an appt with my PCP on Friday and an trying to figure out which of the many many things are priorities to talk about.

For those with GP experience, does this sound like it is a possibility?

-nausea, especially after eating

-bloating, to the point of looking pregnant

-abdominal pain, cramping & discomfort

-not constipated, but "incomplete BMs"...what's going in isn't coming out... LOL sorry

-sometimes diarrhea (seems to be connected to what I eat... Refined/processed foods)

-feel full easily, eat small (!) meals but haven't lost weight since I initially gained it- about 6 months after POTS dx, my thought was due to inactivity, but have been seriously working out and eating small, healthy meals and not really losing weight...

If not gastroparesis, does that list of symptoms ring a bell with anyone?

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Hi Western Mass,

I have all of the above (minus the weight issue). I'm not sure if it's considered gastroparesis. I also have nausea when I smell certain foods, particularly meats. My abdominal pain is normally in the upper abdominal region -- though after all my tests came back normal, my GI doc chalked it up to visceral hypersensitivity. In the past, I have also been diagnosed with lymphocyctic colitis and gastritis. (My gastritis is currently in remission. Yay for small victories.) With the exception of the constipation and diarrhea, the more fatigued I am, the more these symptoms flare.

I hope that helps somewhat. Your GI list does sound really similar to mine. Keep hanging in there with the exercise and healthy eating!

Oh, and I just looked up the symptoms of gastroparesis on Mayo's website. Check it out: http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=symptoms

Best wishes,

Leslie

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Thank you Leslie. I have seen that link and just re-read it. But with some of the things I've had (even Shingles!) the way I got it was much different from pictures and may/may not match up with symptoms list. Even with POTS--we all have so many different presentations. I guess I'm looking for personal stories like yours that can point me in any direction :) Was sort of wondering if any one with GP presented with similar symptoms to me.

I am off to google gastritits and lymphocyctic colitis now...


It seems like this IS something I need to pursue with the Dr though, correct?

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: ) I hear you on not presenting by the textbook. It took the ER docs nearly an entire day to figure out I had appendicitis. I have POTS and autoimmune issues. It so often seems like every symptom under the sun "might" be connected to one, the other, or both.

My understanding is that GP is part of having POTS. I would recommend talking to a doc about it.

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Check, check and check :) minus the not loosing weight for some reason I have been able to do that easier this past year. (Oh shingles too at age 10 took the doctors a few days to figure that was what i had cause of my age) I did also have my gallbladder out last year (took 12 days and 2 hospitals to figure it out) and it seemed like instead of getting better it has gotten worse..I also flip extremes though and can have gastric dumping? Where it seems about 5-30 mins after I eat I need to be in the bathroom now and everything I just ate comes out looking about the same (sorry gross I know) so it has me questioning if what I have could be classified as gastroparesis as I seems to differ occasionally, although I have noticed it too goes in spurts of being one way vrs the other way depending on the day, time, how the moon is aligned?!? :) sorry I am not much help, I haven't pursued it too much other then when I was in the hospital I was scoped entirely and nothing came up other then a hiatal hernia...so the internist I saw a few months later dx me with IBS which fits somewhat but not as neatly as gastroparesis or dumping syndrome or maybe treating the hernia....

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I was diagnosed with significant gastroparesis this past fall. I had all the symptoms you are describing. I took photos of how bloated I was after eating, and I looked 5-6 months pregnant. I'm really thin so it was very noticeable. Lots of stomach pain. I lost of ton of weight because I couldn't eat. Lived on Zofran.

The testing was pretty easy, nuclear medicine testing. I ate a radioactive breakfast and then had pictures taken after eating, right away and then at 2 and 4 hours. I felt really sick around hour 3.

I've been on a low fat/low fiber diet, and making sure I keep up my fluids, and slowly I think things are healing somewhat. I will push it on days I feel better and back off if I have pain. They did have to rule a lot of other things out- IBS etc, but since I already had my gall bladder removed it narrowed it down pretty quick.

Good luck! Push your doc to get tested for it.

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Ash, like you, I'm currently flip flopping between the two. Sunday I had to stay within 10 paces of a toilet and now I haven't gone since. I'm going to my PCP tomorrow. I think most likely she'll refer me back to my GI, but if I learn anything, I'll let you all know.

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Yes Angela, I am supposed to be on the diet long term, like forever. But there are foods that I miss and I'm underweight so I am trying to eat things on days that I my tummy feels better. I feel like it's worse in the am, and that's when they did the testing. I can always digest things easier in the evening/late part of the day. My hope is that with the diet and exercise and some alternative med treatments (massage, yoga, acupuncture etc) that I can reverse some of the slowing and get it back to a better place.

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Thanks Lel I would love to hear what you find out......Azmusiclover...may I ask how long have you been on the low fat/low fiber diet and how long till you noticed a difference in symptoms. I have been following a low fat/lower fiber diet for about a year (since having gallbladder out) and can't say I notice much difference other then if I do cheat and eat a heavy or higher fat meal I get more bloated and have to be in the bathroom quickly. Although it seems I can also eat the same thing every day for 3 days with no problems and then the 4th day it causes me to be in the loo or bloated to the point I look extremely pregnant and am very uncomfortable, or it "triggers" a "I can't go o the bathroom for a week type response". I did ask my cardiologist if I needed to see a GI dr and he didn't seem too concerned with it, just told me that was part of the dysautonomia and to try and avoid trigger foods....I wonder though if I could get an appt with a GI doctor without a referral and if so do you have any suggestions on questions to ask the dr....thanks for the reply and sorry everything is squished together I am on a iPad and cannot figure out how to make it so it keeps my paragraphs spaced when I post. :)

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Ash, I have been on the diet itself about 6 months. But, before I went on the diet, I had pretty much stopped eating, save for soup and crackers and cheese. I really think I had an ulcer too that was causing a lot of the pain. Everything needed time to heal up, especially since my surgery in 2011 for my gall bladder. I do cheat and eat some things I "shouldn't" as I feel better. When I push it, I get constipated and have some pain, so I know to back off. On days where it is really bad, I just do liquids or soft foods and give my tummy a break. I have also experienced the issue of eating the same thing being ok and then all of a sudden it's not! So frustrating. I have completely cut out any darker sodas. I drink water water water. Occasionally Sprite. Ginger Ale. White wine. Vodka (if it's a really good day) I am feeling better. Last year was very rough. I'm slowly pulling out of it and being able to eat more.

Have you lost a bunch of weight? Most docs don't know what to do with GI stuff, and most GI docs just want to scope you and diagnose you as IBS when they don't see anything. (not all docs, just my experience) It was Dr. Goodman at Mayo who had me see the GI to test for the gastroparesis. It was crazy. After 4 hours, I only had 59% of my "test meal" that had fully digested!!!!

Referrals tend to be insurance based. If you are PPO you should be able to self refer. I would keep a journal for a couple of weeks, note the food, how much you ate, how you felt, any symptoms (gas, bloating, etc) and then show it to the doc.

Good luck!

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Thanks Azmusiclover for the information! May I ask what they found with your gallbladder? Mine I didn't have any gallstones it was just scar tissue and not working properly, I wonder if that means something. I have lost a lot of weight this last year in the beginning I was trying and went on weight watchers, but once I reached my goal weigh (135) I stopped following the program and still continued to loose (my lowest was 114) my starting weight before my gallbladder coming out was 159. So although I am happy with the weight I have lost it has been unintentional for a bit of it which has been a little scary (especially when I am eating foods that should be having me gain/maintain weight, I.e. peanut butter). That's crazy that you had only digested 59% ugg I am sure you just felt horrible. I will have to check into my insurance and see, but I like the idea of the food journey I know I had kept one for a little while last year but slacked a lot :) it does however, sound like I eat pretty similar to how you are, so hopefully, even if I can't get in with a GI doctor I can self manage. And yes lots of water and Gatorade I found if I cheat and even drink 1 dr pepper I will be hurting or Starbucks (which is sad.lol) . :)

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My gallbladder didn't have any stones either! But, when they did the function test, it came out at 0%. So it just quit. When they took it out it was disgusting looking. (I have pictures) It hadn't been healthy for a long time. My weight loss actually happened after I had the gallbladder removed. My body didn't adjust to the loss even though it quit working. Strange.

Issie, I tried some enzymes prior to all of these issues several years ago, didn't really notice much difference. I do use probiotics on occasion. Are there specific ones to try for these kinds of issues?

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If there are malabsorption issues - many of the alternative people think a good plant based enzyme that covers all the basis - is good. I take enzymes daily and also probiotics. I think a lot of our issues could be in the gut. There are studies showing that autoimmunity plays a big part in the intestines. I personally, just think we need to work on our digestion and assimilation of things and keeping the flora in good shape and then that's one less thing to worry about. And it might help us more then we realize.

Of course, I don't have gastroparesis - so can't say for sure that this would help. But, with me it does.

Issie

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I totally agree with you and I know that when I flare, I lose weight. Like lots of weight. I may try the enzymes again. It's not like it's going to hurt anything! I miss eating salad. LOL.

I am just going to keep learning more and trying things and not give up on having another remission.

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Ash, if your cardiologist isn't interested in giving you a GI referral, perhaps your primary care doctor will. In the past, this route has helped me get into a neurologist.

As for my doctor's appointment, I didn't learn anything new. They pretty much took a stool sample, and now I'm waiting the results and my GI's opinion. Like before... I'll keep you posted. The medical world always seems to be such a long process. {sign}

I haven't tried tracking my body's reaction fiber/fatty foods, but that's a really good idea, AZ. I eat a high fiber bread, which seems to be a trigger, so I was going to track my reaction to gluten but perhaps it's the fiber that's really affecting me. Hmm.

Thanks for all the info!

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I saw my dr and am being referred to a GE. Issie, I do take digestive enzymes with meals, they do help somewhat. And a daily probiotic. I just started dicyclomine 20mg 4x/day, and simethicone (OTC) after every meal. Simethicone helps somewhat, and possibly the dicyclomine as well but also makes me dizzy and blurry eyed and possibly bradycardia?

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Last night I ran across someone with gastroparesis who is doing the diet that I'm on (vegan - low fat) and she said that if she cooks the veggies they don't bother her and the change in her diet has made her almost normal again. It's on the Inspire forum --if you want to see what she wrote. The elimination of dairy, meat, eggs etc. seemed to have made a difference for her. I know it has for me.

Issie

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Thanks Issie, it's definitely something to look into. I'm a little overwhelmed on dietary changes right now!

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My latest gastro told me something very interesting. Gastroparesis may come and go depending on how my ANS is doing on a given day. She said just because I didn't have it the day of the gastric emptying study doesn't mean I never have it. It just means I don't have it all of the time and it is secondary to ANS issues.

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I have gastroparesis. And all that you shared is something I have often. At first the symptoms were really bad reflux and pain in my gut. Reflux so bad I would lose my voice. I have only vomited a few times but have many friends that have gp that vomit all the time. A GI dr. can perform a gastric emptying test to see if you have gp.

I have had gp since 2008 but not til 2010 did it get bad. I was overweight when it started to get bad , so I had a weight buffer. I am down 90 pounds and still losing. It is a horrible thing to have. I hope you don't have it. But the best way to be sure is the gastric emptying test. In the meantime stay away from fiber, raw fruits and veggies. Very small meals 5- 6 times a day. Keep a diary of the foods you eat and that bother you. I am no longer eating solids. I have found that dairy and gluten seem to make things worse for me. I drink Boost and PowerAde. But people can be at different places with gp.Not everyone gets to this point, some can still eat solids. One thing I know for sure is everyone is different. And each day can be different. What might be ok one day may not be the next.

The vagus nerve controls so much. With dys. the chances of developing gastroparesis , I have found, can be common.

So sorry you are suffering. Praying things get better for you.

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Thanks for replying, and I'm sorry you deal with GP!

For now, the GE has uncovered SIBO and fructose malabsorption- both of which could be caused by GP. The FM diet is really horrible- so restrictive! About to start a second round of antibiotics for the sibo... The GE I see again in 8 weeks, and if I'm not better she wants to look into inflammatory bowel diseases... She seems reluctant to consider GP, though I've raised the question a few times now. She said the test and treatments for it are quite toxic-- but that's not a reason to find out! The FM symptoms are pretty similar, so I guess for now we will see.

Is GP something that once you have, doesn't go away? I've been wondering how to differentiate between GP and just autonomic digestive problems... Like someone said above, GP that comes and goes, or like the full blown GP.

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I also have gastroparesis. My symptoms are primarily crazy belching after meals (fermenting food) and reflux along with bloating. The german herb Iberogast (bought in on Amazon) and acupuncture have been amazing for me. I recently stopped acupuncture (mainly because I was doing really well) and the symptoms are starting to come back. Some clinical reports have indicated that acupuncture can completely normalize gastric emptying times.

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