Group photo
Author:
MEESSHH SparkPoints: (90)
Fitness Minutes: (0)
Posts: 19
10/18/14 6:19 P

Send Private Message
Reply
My doc said small frequent meals of soft foods. That's it. So I saw a dietician who said 1 cup calorie liquid with Palm any food, even apples, six times a day. Kept eating more than that so I read Crystal's two books, did own research and can't seem to do it right for me. Read only 10-15 grams fiber. I eat more fiber than that bc I love fruit and veggies and boxed baby food is unsatisfying as are smoothies to me.

I have given up and just on juice fruit candy gum and powdered protein and greens.

I often will eat/drink a lot to get energy then too full to eat or drink the rest of the day. (Gas blocks intestines and presses on lungs so can't breathe well.) One day I will eat a lot next day nothing but candy and juice. I feel like a failure at managing my symptoms. I don't even eat meals- I just eat whenever room is inside of me and if too full force in calorie drinks that taste sweet. I stopped eating veggies bc they don't give me energy. I feel plugged up all the time.

Edited by: MEESSHH at: 10/18/2014 (18:22)
EXOTEC's Photo EXOTEC Posts: 3,327
4/27/14 10:30 A

My SparkPage
Send Private Message
Reply
I was recently admonished toward a liquid diet ... not YET, says I.
However, I've been reducing my roughage (fiber) on my own for quite a while, since it causes distress. That also came up at my latest appointment, and my GI specialist wants me eating NO roughage of any kind.
I cheat a bit. I eat some canned (yuk) green or wax beans, some julienne beets, and I have an ancient mandolin which will make paper-thin slices of carrots. I can steam those to a consistency I can manage. That's about my entire "pantry" of veggies. No salads whatsoever, and *boy* am I craving those.

In re: beans. I can't eat a great quantity of beans, but it helps if I've prepared them properly. Canned beans never set well at all for me. I buy dried, soak them in several water changes at least overnight, and then simmer them until they're almost "refried" (ie, mushy) in my crock pot. They smash with the slightest pressure when I'm done. Those don't cause me much trouble. I do get hungry for chili - and when I make it, I do it more like a "Texas" chili, with all the chili flavors, but mostly meat and only a small amount of beans. I simmer it all until the tiny diced meat is soft like "pulled" meat. I use about 3 pounds of meat to a cup of (preprepared) beans. It seems like chili to me!

Also, I'd stay far from canola oil. It's just rapeseed oil, and isn't especially healthy. The best oils are coconut (which also helps heal my tummy sometimes) and olive oils. I always use the regular olive for cooking, and the EVOO only for cold or warm uses. Its break temp isn't as high and isn't really good for hot use. The coconut is excellent, as would be palm kernel oil. I've heard good things about avocado and walnut and other exotic oils... but the coconut works really well for me and I see no reason to switch to the higher priced ones.

The screwy thing about my GP, if that's what it is, is that fat actually *helps* me. If my stomach isn't happy, the best thing I can do to it for food is to eat very well-marbled meat. Or chicken with the skin. It soothes the gripes, for reasons I can't fathom. While I'd *like* to know the reason, I don't really need to - so long as it works!

It seems like this condition is another which requires a lot of individualization. What works for me may be total anathema for others. And vice versa.

Good luck to everybody in finding what works for them!


...the problem with people these days is
they've forgotten we're really just animals ...
(attributation forgotten)

We did not create the web of life; we are but a strand in it.
~attributed to Chief Seattle

We don't have souls. We ARE souls. We have bodies.
~C.S. Lewis


 current weight: 231.0 
380
322.5
265
207.5
150
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/30/12 8:49 P

Send Private Message
Reply
Yeah, beans are incredibly full of fiber. I've craved chili or pork and beans or such like that a few times since I was diagnosed but every time I look at the label and the high amount of fiber I remind myself that the pain isn't worth it.

~ 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)
Fitness Minutes: (41,579)
Posts: 30,457
5/30/12 3:26 P

My SparkPage
Send Private Message
Reply
I changed my mind about giving the refried beans another try; I checked the labels in the store and I just think there is too much fiber in them for me.


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.

A. A. Milne



 current weight: -1.8  under
5
2.5
0
-2.5
-5
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/24/12 1:34 A

Send Private Message
Reply
www.dailyspark.com/blog.asp?post=man
uf
actured_functional_fiber_lets_talk_sR>pecifics

www.dailyspark.com/blog.asp?post=pro
ce
ssed_foods_extra_fiber_bellyache


There are a lot of foods that now contain 'fake' fiber - and it can actually cause people with normal digestive tracts to get sick. Whenever I eat something not realizing it's in there, it makes me as sick as I would eating about 3x as much regular fiber. This is how some companies make their products seem healthier by cranking up the fiber count in foods that shouldn't have much or any fiber.

~ 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.
CREECE1's Photo CREECE1 SparkPoints: (0)
Fitness Minutes: (3,518)
Posts: 156
5/24/12 12:41 A

My SparkPage
Send Private Message
Reply
I have never heard of fake fiber before. Tell me more or give me sites to look up so I can read about it.

'I can do all things through Christ who strengthens me.' Phil 4:13


 current weight: 190.0 
218
199.75
181.5
163.25
145
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/23/12 4:40 P

Send Private Message
Reply
Soaking some higher fiber items can take out some of the fiber (that's how they make fake fiber after all), but it doesn't take it all out. It's important for every person to learn what their body will and will not accept. For instance, soaking/cooking items doesn't help me digest any foods, no matter what it is. For some people it doesn't matter what food the have absolutely anything makes them sick and that's when they end up on TPN or enterel feeding. So anyone who doesn't know what their body will accept must be extra cautious and add in any new foods incredibly slowly - no more than 1 new food every 2-3 days is preferable. It's also important to know that what your body will accept can always change, so what you can have today you might not be able to have a month or year from now - this is what's happening for me, and with the TPN not doing enough good (and causing a nasty allergic reaction) it seems I will be going to enteral feeding through a nasaljejunostomy tube or just jejunostomy tube soon.

Every person with GP has a different diet and different ability to process nutrition. It is never safe to assume that what one person can have anyone can have. We can share items to try, but every person must learn for him/herself.

~ 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)
Fitness Minutes: (41,579)
Posts: 30,457
5/23/12 4:22 P

My SparkPage
Send Private Message
Reply
I didn't know that about the meat substitutes and refried beans. I will have to give them a try again. Before I was diagnoses with my GP I used to eat those Boca Burgers and use the crumbles too. I also use to use the fat free refried beans to use as taco filling or to make quesadillas.


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.

A. A. Milne



 current weight: -1.8  under
5
2.5
0
-2.5
-5
CREECE1's Photo CREECE1 SparkPoints: (0)
Fitness Minutes: (3,518)
Posts: 156
5/22/12 10:25 P

My SparkPage
Send Private Message
Reply
In getting information on GP and seeing a dietician I really learned a lot about the disease. I am a vegan and have learned to stay away from raw and stringy vegetables. I don't eat any vegetable that have seeds like a blackberry. One way to get around this is to make a smoothie. I don't even use milk for these and the Vita-Mix that I use for these make them as if they are ice cream. I eat many things from the can or make sure my food is pealed and cooked until tender. This has made a difference in my diet. I have not had lettuce, but in small amounts, when I was able to increase things into my diet. Then about 1 month ago I must have gotten a flu bug and things went haywire. I was so sick to my stomach that I could eat nothing without it wanting to come back up. I was nauseated all the time and had no appetite at all. Amazing I was never hungry at the time and I am still not hungry since the incidence. I don't remember much else except getting blood work and being sent to the ER by the Dr.'s order. My electrolytes were dangerously low. I never found out what caused me to be sick in the first place, but I sure am glad that is behind me now. I eat the same things I did before getting sick. I can eat any meat substitute. Since it has been processed already the stomach can handle it even if it is high in fiber. I has a harder time digesting foods that have a skin like your beans and legumes. But then again if the skin around the bean is broken like in the refried beans it is easier to digest since the fiber is broken down. Any bean that this is done to can be easily digested. Canned green beans can be eaten better if the stomach has had some time for healing first. The only two kind of oils that are best for the stomach are canola and olive oils. Stay away from all other oils when cooking. Avocados, nuts,flax seed (ground) and olives are good in moderation. These are all things I learned from the dietician. I looked up one of the web resources and it had some of the same information plus some that I copied and read to help me better understand my GP. I hope that this information can help.

Edited by: CREECE1 at: 5/22/2012 (22:26)
'I can do all things through Christ who strengthens me.' Phil 4:13


 current weight: 190.0 
218
199.75
181.5
163.25
145
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/21/12 1:09 P

Send Private Message
Reply
In order of difficulty to digest, you have: fiber, fat, protein, and carbs. Eating a high fiber diet is good for people trying to lose weight because it is slow to move and causes the person to be less hungry though the day. But for people who have a slow system already, that's the worst thing we could do! Fat is also difficult to digest, so what we do eat for fats should be healthy fats to maximize the benefits and avoid things that are fried. Lean protein is easier to digest and has good benefits, but avoid fibrous meats (like steak and pork) because what holds the muscle fibers together is not easy to digest and slows down the system. Simple carbs are the easiest to digest, but eating a lot of sugar isn't good for people with GP who are trying to lose weight. So if you ever feel really really cold after eating (your body puts your energy into digestion instead of keeping you warm) or if you feel weak or light-headed, get some hypoglycemia tablets (in most drugstores) or suck on some gummy snacks. This will allow the simple carbs to be absorbed through your mouth and go to your brain to keep it going.

Other than that, what your body will accept really will be different than what others with GP can eat. But the basic rule of thumb is low fat and low fiber. If a doctor who is treating GP doesn't understand that, then they're not the right doctor to be treating GP.

~ 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.
SIERRA551 Posts: 16
5/21/12 12:18 P

My SparkPage
Send Private Message
Reply
My Dr. said Low Fiber Low Fat. I can tell when I stray from the diet I hurt. I had to go thru a couple of Dr's to find the right on for me. The first one Dx. me with GP. Started me on Reglan. Then stopped it due to tremmors. Did not offer me any other meds. Sid I would just have to learn to deal with it. He did give me anti nausea meds. I was still so nauseated.
I found another Dr.who started me on Domperidome. It has helped alot. I still must stick with low fat low fiber.

MOM2ACAT's Photo MOM2ACAT SparkPoints: (0)
Fitness Minutes: (41,579)
Posts: 30,457
5/19/12 5:34 P

My SparkPage
Send Private Message
Reply
My GI doctor told me low fiber also.

I know if I eat something high fiber, like blueberries, I end up with a lot of pain. And I have to stay away from anything where you eat the skin on it, has "stringy stuff" like celery, or has seeds, like strawberries. The only raw fruit I can eat are bananas, and I can eat apples only in the form of applesauce.


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.

A. A. Milne



 current weight: -1.8  under
5
2.5
0
-2.5
-5
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
5/19/12 5:24 P

Send Private Message
Reply
I'm sorry to say it, but it seems you didn't find the right doctor to treat you. You're right - we need to keep our fiber low. Fiber does NOT help the stomach contract. It adds bulk to what we eat and may help healthy intestines move what you've eaten easier, but when the digestive system has some paralysis bulk and slow movement are bad ideas!

As long as you still have significant movement (as in only some slowing not major paralysis) you can incorporate some fiber. The going recommendation is 10g/day or less. Things like melons and bananas are usually okay whereas things like celery and berries are often problems. Always take vitamins - that's standard. But how much your body will accept really is for you to figure out. Start with a minimal diet and slowly add in one food every 2-3 days and see what you react to. Another idea is to puree foods and/or make smoothies. When food is in liquid form it often helps make it easier to pass through the pyloris, though it's not guaranteed.

As for info from doctors, I tend to teach my doctors about GP, not the other way around. That's because I've come across many doctors who have never heard of it or have prejudicial ideas of what GP is or how it happens. Most of what I've learned is through doing my own research online from many different sources. It's because off that when a doctor tells me something that makes no sense (like GP can only be caused by diabetes - a complete lie) I can correct them or walk out. Though always remember that doctors are human and make mistakes, plus there have been some steps forward in diagnosis in treatment over the last few years, so if the doctor learned about it in med school 20 years ago and haven't read up on it, they won't know the new info. You can try to provide the doctor some information (make sure it's a reputable source, such as academia research) or you can try a new doctor. Calling ahead of time and asking the staff how many patients with GP the doctor is treating might be a way to establish if the doctor is up-to-date on information or you're his/her first case.

I'm sorry you didn't have luck with this doctor, but know you're not alone with this problem. I went to the Mayo Clinic in Rochester, MN, and was treated terribly by doctors who are supposed to be the best but most definitely are not. When I realized I was being hurt not helped by them I removed myself from their care and kept looking. Eventually I found a GI specialist who is awesome, but I have to fly from MN to PA every few months to see him. Not ideal, but at least when my primary doctor tried to say GP isn't a devistating or dangerous condition I was able to have the two speak and she's now changed her tune to realize I'm much worse off than she was able to understand.

Hang in there and I hope you have more luck with another doctor or can provide information to this doctor so he can help you better.

~ 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.
AUTUMSUN's Photo AUTUMSUN SparkPoints: (5,410)
Fitness Minutes: (1,887)
Posts: 159
5/19/12 12:39 A

My SparkPage
Send Private Message
Reply
I recently went to the doctor to ask if it would be okay for me to have a vegan diet as a gastroparesis sufferer. I explained how I can eat more solid foods now, and how I still plan to steam/cook my veggies to still keep them soft and digestable.
(this is a new doctor as opposed to the one who diagnosed me.)
He said yes its possible I just have to have variety and watch my portions and take vitamin supplements. Which I was fine with anyways, but something he said afterward through me for a loop. He said "well the fiber will help your stomach contract and help you digest everything". Everything I've read says to make sure you have as little fiber as possible -- so what the doctor said doesnt make any sense...
I just wanted to get on here and see what you guys thought on the subject. I do plan to stick to MY g.p. diet with a vegan twist, just wanted to see if anyone else on here has heard conflicting info from their doctor as well.

Baby due 2/2/18


 current weight: 207.0 
210
190
170
150
130
Page: 1 of (1)  

Report Innappropriate Post

Other Living with Gastroparesis General Team Discussion Forum Posts

Topics:
Last Post:



Thread URL: https://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x26236x48134969

Review our Community Guidelines