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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
9/10/11 5:51 P

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With spending the last year researching the condition I've seen how bad it can get and how some people can have just a few diet changes and are okay. With people who are new I just want them to know what the reality of this condition is, but I can be a bit harsh. I had started typing and realized my own depressed mood was coming through so I deleted it.

Oh and don't worry about TMI - we all know what this condition is like so we talk about everything from vomiting to bowel movements, bloating to food intake. We share information because it can help us all to know what it is like for others. And definitely be kind to your stomach - because the more you throw up the more it damages your esophagus. Just hang in there with what you can tolerate for now. The nutritionist can really help you also.

I never realized how much fiber was in everyday foods until I had to know. Plus all the fake fiber companies are putting into food because 'high fiber' is the new popular phrase is horrible for us. So it is incredibly important to look at nutritional information.

When you feel ready to exercise again, definitely start incredibly slow and never push yourself. I've completely given up exercising (beyond little things for just a few minutes in a day) because I can barely maintain my weight as it is. So even if all you do is a few pushups and situps or a short workout on a stability ball, count it as a good thing.

I'm glad you found us. Join in and ask or answer any questions you'd like.

~ 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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GUTHRIESM's Photo GUTHRIESM Posts: 47
9/10/11 10:17 A

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Thank you for the links.

I didn't mean to imply my doctor promised it would go away - he is just optimistic that it will. I am also on medications to try and help the process along.

The diet plan he gave me has three stages - the first is an all liquid plan, second is the low protein with the third stage being the just low fat/fiber plan. He asked me to stick to stage 2 because I am vomiting the majority of my meals. So he wants me to be really kind to my stomach until I can get a few days without the constant vomiting. (sorry if this is TMI).

The simple carbs are the part I'm having trouble with- I didn't realize how few of those I ate until I did an inventory of my cabinets! All I have are fiber enriched items (whole wheat cereals, etc).

You are right- I know I've lost muscle mass with the rapid weight loss. I need to exercise but that will have to wait one more week until I can get back on pain management (I have arthritis as well). Plus with the trouble keeping food down, I have very little energy.

I have not seen a nutritionist - I will be back at a doctor next week and ask for some names then. Thank you for that reminder.

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
9/9/11 3:04 P

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This may seem opposite to you, but you're probably going to have to start eating more simple carbs. You may gain a little weight from it, but after that dramatic (and potentially dangerous) of a weight loss, it might be better to put a few pounds back on then slowly start bringing them down again. Most of what you lost was probably muscle since fast weight loss needs quick calories, which is made by your body 'eating' your muscles instead of 'burning' body fat. Still, the only way to get calories are by eating fat, carbs (including fiber), and protein. GP is a low fat and low fiber diet (I'm not sure why your doctor said low protein... moderate protein perhaps...) so you're down to only protein and simple carbs (many complex carbs include fiber, so it's hard to get complex carbs while avoiding fiber) to get calories.

Have you seen a nutritionist? I would highly recommend it because they can give you a better idea for how the GP diet works: like you should be eating 5-6x/day and should not drink liquids while eating. Also there are a few threads in our team that can help you choose foods that may work for you. Start out slowly to find out what your body will accept.

There is more I want to say, especially about the possiblity of it being spontaneously cured by Thanksgiving and about the weight loss, but I'm going to bite my tongue. I was diagnosed a year ago and have spent this time researching the condition and I'd probably say something that would scare you off from our team. Instead, I invite you to check out: www.g-pact.org www.facebook.com/GPACT www.youtube.com/users/GPACT for more information about the condition, read stories of others who have it, and to learn about what GPACT does to help us. The youtube channel will show you the stories of some incredibly brave people who live with the condition.

~ 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
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My sparkfriends are my greatest support and I'm grateful for it.
GUTHRIESM's Photo GUTHRIESM Posts: 47
9/7/11 4:22 P

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Thanks for the feedback. Unfortunately the doc told me low fat, low protein, and low fiber. He gave me a booklet and whole milk and protein were on the no list. I am living on meal shakes though - making carnation instant breakfast in skim milk. A friend has offered me some protein powder that I can mix with water too.

It is just such a huge adjustment from my "normal" diet. I definitely have lost too much weight but I also had an extra amount of padding to cover me there! Someone joked that they were one good stomach bug from goal weight- and that is about what I did!

Truthfully- I'm hoping I don't gain the weight back either...

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


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9/7/11 4:12 P

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Welcome to the team!

I was just diagnosed in December. I have also had gastritis before, and I know how painful that can be.

I haven't had any problems yet with losing too much weight, but I was told by a dietician if lose too much weight due to my cancer treatment, to eat foods higher in protein and calories; if you can drink shakes or smoothies, you might try adding some protein powder to them. And try using whole milk for things such as puddings or mashed potatoes.


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



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GUTHRIESM's Photo GUTHRIESM Posts: 47
9/6/11 6:31 P

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Hi, I'm Sarah. I am 29 years old and received the "official" diagnosis of gastroparesis last week. My health problems started in early July when I became no longer to keep food down. My upper endoscopy revealed gastritis but no ulcer (which was the working diagnosis). Subsequently I was sent for a gastric emptying study that showed significant gastroparesis.

My doctor feels it will be temporary- but not quick to heal (optimistically thinking it will heal by Thanksgiving). Meanwhile I am under orders to not lose any more weight (I've lost 25 pounds in 8 weeks).

So while I am still nearly 10 pounds from my goal weight, I am now trying to maintain. However I am still suffering pretty heavily and am eating mostly liquid and soft foods.

Any tips for getting proper calorie amounts in would be appreciated. I tracked today and haven't managed to crest 600 calories but I am still getting sick with solids and any significant volume of liquids (~6oz).

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


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