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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/16/11 1:08 A

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A nutritionist who knows the GP diet should help. Though it really is a very personal issue as everyone's version is different. What foods don't bother my GP will cause horrible pain in someone else, and vice versa. The nutritionist will get you on a track, but you will be the one to determine what is really best.

I've seen two different nutritionists (one I needed to see asap the other was closer and easier to get to) and they gave me some ideas, but I did all the hard work. The biggest help for me when I saw the 2nd one was that she helped me set my fat, fiber, calorie, carb, and protein limits for my nutrition tracker here on SP. Though since then, everything has gone wrong so those limits don't work any more. I haven't gone back because I've learned that my GP is different every single day so I have to figure out what works when I'm feeling certain ways. That's something only I could learn on my own.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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MARBLES1ST's Photo MARBLES1ST Posts: 3
5/14/11 8:59 P

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Hi, this is frustrating and I hear you. Had the stomach emptying test and confirmed my problem. It was hard to describe how belchy I felt all the time. The nutrition recorder on Spark People is helping me but as I try foods I'm having to eliminate. I'm going to find a nutritionist that knows how to work with people who have gastroparesis.
Hang in there. It isn't easy.

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THIKCHIC's Photo THIKCHIC Posts: 89
5/5/11 9:19 P

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Hi PianoAngel, My name is Susan I am so sorry for you! I thought I had it bad, I am not down to just liquid yet. I do relate to the fact that you are not losing weight, I am right there with you. Odd that weight loss is a symptom of GP but I havent lost but a few pounds but eat less and less and exercise more and more every day. My MD looks like he doesnt believe it either but what can you say, right? Why do you want to eat when you are miserable afterwards anyway, that is what I think. Sprite and crackers are my best friend some times.

There is a couple of sites listed on the team page that list with what to eat and what not too. I believe it is under the "Library" area.

Good luck and let me know if I can do anything for you, I will surely try! emoticon

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PIANOANGELWINGS's Photo PIANOANGELWINGS Posts: 259
5/4/11 9:56 P

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Hi there I am new to the team. I have had issues for about a year. I have had 2 endoscopies. I have 5 ulcers in my stomach. One starts up by my esophagus and the other 4 are in the bottom of my stomach. The first EGD that I had failed b/c my stomach was so full the dr could not get down in to see anything. I had not eaten anything from 9 pm until the test which did not happen until almost noon the next day. I have bloating and pain so severe it feels like I am (excuse the expression) having a baby out my mouth. When I ate sometimes the food would back up and come out. I wasn't vomiting but the food was just rolling backwards. I am now only on liquids. I would love to eat a salad. Right now it seems like anything I eat backfires. Just liquids that is all I can handle right now. I have tried macaroni but no way. I can eat watered down mashed potatoes. The worst thing is I exercise and eat very little and still the weight is sticking to me. I don't think that the doctors believe that I am not eating anything. It is frustrating. I was in denial. But I am understanding that this is real. I am off to gastroenterologist number 3 now to see if anything can be done. I can drink water just not a lot at a time or every time I move it swishes around. I looked on here to see if this group existed and I am glad to see that it does. I am hoping the team support will help me cope. The empty study that they did showed that in two hours none of the food had moved out of my stomach. I am having a hard time with this especially since the weight is not coming off. The doctor says lose the weight. I wish I could. I almost wish I could vomit maybe they would believe me. But the only time I have had that problem was this past week when I had the flu over the weekend. I also have hypothyroid, hiatal hernia, umbilical hernia, and now I am pre-diabetic as well. I am at my wits end at trying to figure this out for myself. Even with all the doctors I feel all alone. Spark has been such a support for me. I am hoping this team will be even more of a help. Thanks for listening. If you read all this, God bless you! emoticon emoticon emoticon

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THIKCHIC's Photo THIKCHIC Posts: 89
4/29/11 4:07 A

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Hello, I wanted to say thanx for sharing. I often wondered why I could NEVER finish my water. I have not since I started SP, I just cant. Now I know why and I guess I dont feel so bad. But then again how do we get our water?? emoticon

Also, I would like to know if anyone has had issues with sweets or juice? I have a really hard time with those things among the others.

Thanx

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TYMPANI's Photo TYMPANI Posts: 124
4/27/11 12:22 A

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1STATEOFDENIAL - I, too, have a diagnosis from white blood cells hanging out where they shouldn't be - eosinophilic gastroenteritus. That is coupled with a unofficial diagnosis of GP. When the doctor first mentioned it, I did a bunch of research and put myself on a liquid diet. When I went back to get the results from my other tests, my symptoms had already cleared due to the diet. My doc decided that was good enough, and was advised to start eating real foods again, slowly.

From everything I've heard and read, I see that I have a very mild case, indeed. As long as I stay away from too much roughage (there are some raw veggies I stay well away from, and foods like corn that I don't eat regardless of how it's prepared), and NEVER eat in the evening, I am fine. I'm surprised that you eat your fiber in the evening, as the moment I recline I seem to lose the ability to digest food at all. There are times I've messed up and ate something, then had to stay upright until 2 or 3 in the morning to make up for it. :P Oops...

My heart goes out to you, and to everyone here. It's good to meet you. I hope you are well, right now.

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ANDREWS_MOM's Photo ANDREWS_MOM SparkPoints: (104,713)
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4/8/11 2:18 P

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Thanks for sharing!
There are tons of good ideas & great advice here!
emoticon

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/26/11 9:42 P

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During my flare-up, the problem is that my stomach and intestines did not want to process ANYTHING. Also my eosinophilic esophagitis has come back and without treatment it closes off my esophagus and trying to swallow anything is incredibly painful. Even just a few days into the 6 week treatment it is doing much better. Now that my flare-up is over, I am having no problem whatsoever drinking all of my water or eating my full diet (2,000 cals).

When it comes to drinking water, you should wait at least 30 minutes after drinking something before you eat. You should not eat and drink at the same time (it will layer solids and fluids in your stomach and fill you up much faster).

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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My sparkfriends are my greatest support and I'm grateful for it.
DOCKSIDER Posts: 341
1/25/11 7:21 P

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I, too, used to be able to drink my 8 glasses of water a day (without any difficulty). Since being diagnosed with gastroparesis, drinking fluids has become more of a challenge, and that includes soups. Like others have mentioned, it is easier for me to sip on room temperature water throughout the day, being careful not to drink too much at one time. And I avoid drinking any liquids when eating.

1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/18/11 11:49 P

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My sparkstreak of drinking 8+ cups of water per day is over at 101. I hate that it is over because of my GP, not because I didn't put in the effort. I got 4 cups in while at work (I normally have 6). But from 6pm-11pm I have been trying to drink 8oz of ensure and just finished the last swallow. It is very disheartening when it takes 5 hours to drink 8oz of liquid.
emoticon emoticon

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
12/22/10 8:32 P

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Most people like drinking water cold, but few think about what happens when you do. An aunt brought the effects to my attention many years ago, and when you hear it, it makes sense. emoticon Now with my GP diagnosis, it makes even more sense to me.

Best wishes to you!

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
MOM2ACAT's Photo MOM2ACAT SparkPoints: (0)
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12/22/10 5:21 P

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Thank you for the tips!

I often have to drink my water room temperature because cold water doesn't set well in my stomach; now I know why!

I am new to this team too, I was just diagnosed with GP less than a month ago.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
12/21/10 11:50 P

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I've been with the GP team for about two weeks, but am finally getting around to introducing myself. The story of my horrible 2010 is long and complicated, but here's the GP part:

Earlier this year I was given 4 GI diagnoses: ileitis, GERD, gastroparesis, and eosinophilic esophagitis. The ileitis is now healing after stopping the medication that caused it. I'm on pantoprazole for the GERD and hoping to ease off it eventually. The eosinophilic esophagitis is basically white blood cells collect in your esophagus and close it off - I've finished treatment and I think I know what caused it so I can try to keep it from happening again. My GP is a mild case (122 min for 50% emptying), and I'm controlling it with diet only - no medications.

It seems the extreme stress I've lived under my entire life, plus working with a dietician at the gym who pushed fruits, veggies, & wheat did me in. The massive fiber flared my GP, which flared my GERD, which started the EE, which closed off my throat. Now that I have this (somewhat) figured out, I am doing better than I have in years - maybe ever. I feel energetic and relatively healthy, with less aches and pains through my body. Also, I can think more clearly and am less depressed.

Tricks that work for me:

I was told that GP diets should have less than 10 grams of fiber per day and minimal fat. Since I have a mild case, through some trial and error I've found my ranges to be 15-18 grams of fiber and 25-45 grams of fat.

I was told that with GP you shouldn't drink and eat at the same time. Drink before eating, drink a half hour or more after eating, and only take small sips if necessary while eating. Otherwise you fill up with liquid and eat even less. Also, when drinking something opt for warm or lukewarm - no less than cool. Cold constricts the digestive system, making GP worse (think of using ice to reduce swelling).

When I get a stomachache from eating too much or eating incorrectly, I've found a warm heating pad on my stomach helps a lot. Warmth relaxes muscles and opens up blood vessels.

I make sure I eat slowly, with smaller but more frequent meals. With SP I only track as breakfast, lunch, dinner, snack, and dessert, but each meal is usually 2-4 parts that I can eat a little at a time. I try to save higher fiber foods and higher fat foods until later in the day, so my body digests it through the night, since I can't sleep if I'm hungry.

Sitting up straight helps also, though I always struggle with this. Slouching crunches everything together, so of course digestion is more difficult.

Check out the link I posted the other day - it is a non-profit group trying to raise awareness. They have a GP cookbook for sale with recipes submitted by people with GP. My mother bought it for me for Christmas and there are a few I want to try.

Also, I talk about my GP to people often - you never know who could benefit from hearing a little about it. I've come across 3 or 4 people who know someone who has it, and sometimes sharing info helps. If 1 person I tell sees the symptoms in someone they love and can get them diagnosed before they go through what I did, it will be worth all the times I've gotten weird and disbelieving looks.

The biggest tip I can give is do what you can to relieve your stress! Stress makes everything worse. Just by getting out of an incredibly stressful job with a horrible and uncaring boss and getting the police, city, and homeowners association involved to deal with terrible neighbors helped so much in relieving my stress, which helped me feel better.

Best Wishes to everyone here living with GP. What tips do you have to share? I hope my tips might help some of you.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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