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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
4/22/13 1:02 A

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Welcome to the team, Robin. To answer your questions, there is no way for anyone, including your doctors, to be able to tell you what foods you definitely can and cannot have. Unfortunately, GP is not a standardized condition in which the symptoms and treatments are the same for all. On the contrary, there is a continuum of the condition, where some need only avoid high fat and high fiber foods and are otherwise normal while others can never eat or drink anything whatsoever. It also depends what part(s) of your digestive system are slowed and which are normal. For some, only the stomach is slowed while others have only the large intestine slowed, or anywhere in between in any combination can be slowed or completely stopped.

The first step to knowing what will work for you is to find out the results of your gastric emptying study (GES). If that shows your stomach only slightly slowed you may be able to have a lot of normal foods, whereas if it is significantly slowed then most likely you won't be able to. The cause of your GP will also lend to what treatments can be attempted, but for some with ideopathic GP the cause is unknown. Your GI specialist who did your GES should be able to give you information about what treatments are best for your degree of GP.

In the meantime, I have other threads on our team that explain how to start figuring out what foods your body will and won't accept. This starts with a clear liquid diet and builds up 1 food at a time very slowly to see what will and won't cause you gastric distress. It's an incredibly slow process but it is extremely important to do it slowly and carefully.

As I said earlier, GP can affect any or all parts of the digestive tract. DTP (digestive tract paralysis) includes GP (gastroparesis literally means paralyzed stomach), CIP (chronic intestinal pseudo-obstruction), and CI (colonic inertia), as well as any mix of these, but they are generally all referred to as GP. Your GI specialist is the one to ask questions about any pain or problems so they can ensure that you're properly diagnosed and treated. Remember, just because you feel pain or bloating in one area doesn't mean that's the area with the problem. The part of the nervous system that feels pain and pressure is not meant to pinpoint areas within the body, as one nerve signal can actually sense pain for a far greater area than what it tells you is there. Ever play the game when you were little where someone lightly tickles your arm and asks you to say when they reach the crook of your elbow, but it's nearly impossible to know for sure when they get there? Exact same thing. This is why doctors have to listen to your symptoms and stories then run highly specialized tests.

As for the makeup of fiber, remember there is a difference between 'fiber' and 'fibrous'. Fibrous is something stringy like the veins in spinach and celery or the connective tissue in steak. It is undigestable and really shouldn't be eaten by anyone, especially us. Then there's fiber, which is a macronutrient that is available at the cellular level. The only real way to break down or digest fiber is to break cellular bonds. We can aid digestion by breaking down foods into smaller bits (drinking smoothies, mashing foods, etc) before they enter the stomach, but it doesn't often solve the problem if our intestines (where it is broken down on a more cellular level and nutrients are absorbed) are also slow. Also, every person's digestive tract is different in what bacteria are present, what digestive enzymes are being used properly or not, etc. So what works for one person won't work for others.

My short answers are: work closely with your doctor to ensure proper diagnosis and to review all treatment options, work on slowly figuring out what foods your body will/won't accept, find a nutritionist who understands what GP is and work with him/her to ensure you're getting proper nutrition within the constraints of your individual needs, and understand that this is a long but important journey.

Even though I can't exactly answer your questions, I hope I've pointed you in a direction where you can pursue the information you need. If you have more questions, please let us know. Many of us have been in your shoes before, having no idea what's happening, where to turn, how to proceed, etc. It's scary and difficult but with willingness to learn and to put in the effort you'll figure it out and find a way to live as healthy of a life as you can.

~ Sheri ~

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


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GRNDMOM43's Photo GRNDMOM43 Posts: 47,152
4/21/13 3:08 P

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The leaders may be able to answer your questions. It may depend on what stage you are at or if you are on the medications or not.
emoticon emoticon to the team. The ladies on the chat thread have helped me so much. We are here for support and encouragement so keep checking in with us. emoticon

Nola

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MADAMEBIZINI's Photo MADAMEBIZINI Posts: 1,166
4/21/13 1:54 P

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Hello everyone. After a year of being sick I have finally been diagnosed. I am now trying to figure out what I can eat and how to deal with this disease. I hope I can learn from others. One of my questions is, can a person have green smoothies? or is that to much fiber? Can I digest fiber if its pulverized or is it still to hard to digest? Any suggestions are appreciated. Also I have a lot of pain in my lower abdomen. Could I also have IBS or is pain in the bowels part of Gastroparesis?
I hope you are all doing well and learning how to live with this disease.
Robin

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