Hi all,
I am so confused on all of the advice i have been getting from the so called experts, I went to a nutrition person who charged me 95 bucks to agrue with me and tell me i do have diabetes when i have been tested and so far i do not have it. All she wanted me to do was give up gateraid, anything with sugar in it and to keep trying over and over veggies. I could not get thru that i can not have veggies. I am telling her about all the things i go thru and she said i have to make up my mind to get better and to get a doctor to give me regelan or something like that i was so ticked i did not listen to what the meds was she wanted me to get. When you deal with people and they know you do not have insurance to go have every test ever made and thensome its as if you are not really sick.....
Sorry for all the venting but i had to get it out or i will
explode and now i will tighten up and try all over again but it gets harder and harder..
Thanks for listening
Marie
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FINDING SOMEONE WHO REALLY KNOWS ABOUT GP
- By plushy
- Posted August 2, 2009 at 12:20 pm · 14 replies
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- By Juliettesue77
- Posted August 2, 2009 at 8:02 pm
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I know how you feel. I currently do not have a GI doctor because of this. They put you on reglan, tell you to eat several small meals a day and send you on your way. No one understands my problems , not even my mom and she's a nurse. Work definely does not get it. I think I am going to go to the center of digestive health in the University Hospital in Iowa City. Is anyone from this area?
Hope you start to feel better.
Jen
- By carebear169
- Posted August 2, 2009 at 8:16 pm
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Hello all, yeah I gave up on the nutrisionist the first time I went there since I seem to know more about this than she did, waste of money those people, anyways, I too have had a horrible time, but if you go to this website they have a list of Motility doctors, who are specialists for people with GP, best place for you to go, this is how I finally found my good doctor. www.digestivedistress.com
- By GPAllie
- Posted August 2, 2009 at 8:20 pm
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Marie,
I decided not to try a nutritionist and dietitian when my first GI doctor gave me a blank stare upon asking for a referral. I realized that if my doctor didn't know what to do with dietary recommendations (and she certainly did not!) then chances are a diet/food person wouldn't either. Especially since GP is such an oddball illness that few know of and fewer understand. I don't have the money to waste on bad advice, the unemployment mess has touched my family so I understand how tight money can be, and especially when you have so many co-pays and expensive meds and procedures, etc. etc. It all comes at once...one big test of faith and patience.
I hope that you find your own path and stay here for support.
Much love, Allie
- By plushy
- Posted August 2, 2009 at 11:09 pm
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Juliettesue77,
I read in our newspaper the warnings about reglan and i am glad i did not get it. I thank you for your support. I have called so many doctors for help but if they think you wont pay your done, if they would care more for us then our money we would be set but thats in a dream world.
Take Care
Marie
- By plushy
- Posted August 2, 2009 at 11:11 pm
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Carebear169,
Thanks for the website i will check it out and hope u have a good week.
Marie
- By plushy
- Posted August 2, 2009 at 11:15 pm
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GPAllie,
I sit and listen to the gov's plan for health care and i hope and pray for all of us that they can find a way for the GPers and for the ones like me who have no insurance and still need help..
Thank you for your kind words, I honestly have more faith in the advice i get here than i have gotten so far from the ones i have paid to help me.
Take Care
Marie
- By NancyL
- Posted August 3, 2009 at 11:05 am
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I second Marie's statement of getting more help here then I have from any outside source. Most nutritionists know what a balanced diet is and understand the restrictions placed on people with diabetes and celiac's disease. But gp is so different and each case is so very different that finding a specialist that is experienced is probably the same as finding a needle in a haystack. My diet is very wierd and unbalanced by normal healthy people standards. But I am feeling better and having less bad days since I have stopped eating things that don't work for me personally. Not getting sick is a higher priority for me then have a "balanced" diet. My protien comes from soy protien powder, my veggies from V8 and my fruit from fruit juice. Carbs I get from a few saltines or white rice now and then.
Good luck with your search for nutritional advice!
Nancy
- By Novagrad
- Posted August 3, 2009 at 5:56 pm
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Marie:
This nutritionist did not know what she was talking about if she told you to eat veggies. The gatorade may be too sweet and could cause diarrhea, though. But that could happen to anyone taking in too much gatorade. I'm not talking about diabetics, either. I remember a critical care doctor telling me (before I was diagnosed with GP) to not drink too much of it because it could cause diarrhea.
Mimi
- By plushy
- Posted August 3, 2009 at 6:29 pm
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Novagrad,
I could not believe this person telling me all of this, she also said for me to try and eat foods with fiber like thats going to help me I am now drinking Propel
water now, so far it is ok
I am always wishing i could find something to eat that will not effect the gp but i am still afraid to try but so many things.
Take Care
Marie
- By philsphan09
- Posted August 3, 2009 at 7:42 pm
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I am very lucky in that the dietician from the company that supplies my home infusion (the iv's, I have a picc for hydration as well as a feeding tube) has been extremely helpful. She's the one who recommended the formula to the dr, it's had to be changed a few times. She also calls me a few times a week to check on my weight. I got no support from the dietician in the hospital when I had the tube put in, and although I like my gi dr, he does what the dietician tells him. Is there any other place, or service, that you can turn to to find a good dietician? Have you tried the insurance company? I have a case manager with mine, and she's been fairly helpful. Good luck and I hope you feel better. michelle
- By plushy
- Posted August 3, 2009 at 8:29 pm
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Hi Michelle,
I went to see her at my local hospital and i do not have health insurance so i am not able to call.
My husband has medicare but i am to young to get it yet, I thought about just asking them to see what they would say because at 95 dollars a pop that will not work.
Thank You andTake Care,
Marie
- By alphabubo
- Posted August 4, 2009 at 1:49 pm
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Dear Marie,
I have also found that I have had trouble with getting true help from the nutritionists that I have seen. I usually end up knowing more than they do or they make suggestions without really seeming to understand the problems involved. Once I saw a nutritionist to try and help me get more protein in my diet to help me rebuild muscle mass from losing so much weight. She said she would be sending me some samples of the products to try in the mail. Only one of several that came actually dealt with adding protein and was not any of the ones we had actually discussed. Another nutritionist I saw several times never really came up with any ideas to help beyond what I had learned myself. I am sure that there are good nutritionists out there, but I have not had luck in that area either.
One suggestion I have is to write a journal in which you record what you eat and how it affects you. This way by reviewing it over time you may be able to discern certain patterns or details that may help in further adapting your diet to one that your body can better handle.
Here is the link to the basic three step diet: www.gicare.com/Diets/Gastroparesis.aspx . Of course, it is important to remember that a food that one person can tolerate might aggravate the symptoms of someone else. So you will need to tailor your diet to what you best can tolerate. I hope that you can have better luck in crafting a diet that fulfills your needs and is one that you can handle better. Best of wishes.
Warm regards,
Bobbiejo
- By busyteacher
- Posted August 4, 2009 at 1:58 pm
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I have a link on my page to the GP diet by Carol Parrish. You an also find it through Google. Not all of it works for me, but it gave me a starting point. It also has different diets for different degrees of GP, so I know what kinds of modifications I should make (based on her modifications) to the foods I tolerate on bad days.
She seems to be the most useful. I bought a book about GP--which had less information than this site.
Keep in mind, too, that your body will take time to respond to dietary changes. Some foods will give you an immediate reaction, while others you may find that you can have occasionally, but not daily.
Good luck!
- By jessconk
- Posted August 4, 2009 at 10:03 pm
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That basic 3 step diet helped me a ton when I first started searching on here...very helpful! I'm gonna check out Carol Parrish's info.
Good luck, you may find a few things that do the trick.
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