Diabetes - Type 1 Community
stomach neuropathy
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stomach neuropathy

I have been a diabetic now for 19 yrs and have been diagnosed with a new complication from it that is making my life extremely hard.  I've been told that I have neuropathy of the stomach. When I asked my GI doctor if it's the same as gastroparesis he said it was but that it is effecting my whole GI system, not just the stomach.  I have all of the symptoms of the chronic condition except for one.  I do not lose weight because of it like everyone else does, I actually gain weight-even though I eat small amounts. I've actually been denied leave at work because of that one symptom being opposite in me. Can I still have gastroparesis and actually gain weight?  Or could it be something else?
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Avatar_n_tn
Dear red78,

My son was diagnosed 2 years ago with gastroparesis and esophogial dismotility. I know how difficult this complication is to deal with. While I'm a volunteer and not a physician I can only give you my personal experience.

My son's entire GI system is also affected and he, as yourself, has not lost weight and in fact has gained some over the past
year. He is lucky that he has an understanding employer who gives him time off when needed. I'm not sure how to advise you on that part of your situation other than getting your physician to write a letter stating the facts.  If you are not seeing someone who specializes in gastroparesis, it maybe  helpful to find a doctor who does and see if he can help.

Meanwhile there are a few new drugs coming up that maybe helpful. My son is currently taking a drug from Canada called Domperidone that has been very helpful. You might ask your doctor if this might be appropriate for to to try.

I can also recommend a website that I have found useful. It is
Gastroparisis and Diabetes - www.niddk.nih.gov.

Please let us know how things turn out and keep in touch. I wish you the very best of luck. Watch for other posts and let us know if there is anything else we can do.

dm
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Avatar_n_tn
Dear Red:

I wonder what your symptoms are. I have been in pure hell for the last two years. I've been a type 1 for 14 years. I ve been getting sick 1 time every two weeks it starts with food being trapped in my stomach, foul burping, then up all night going the bathroom. I finally take immodium and then am constipated for days and it all starts again.I had a gastric emptying not during an episode, and was told I emptying slightly fast. I have not lost weight and in fact gained weight in the last year. The doc that did the study told me he had seen patients thst did not lose weight and had delayed emptying. The gastro docs on the web site suggest I try ridding my system of yeast. My doctor said diabetics can get a condition where bacteria gets trapped in the intestines and causes problems. I am self employed so leaving work is not really an option---did you try to obtain a letter from your doctor--do you have any employee disability policy?
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Avatar_n_tn
I have been a diabetic for 13 years and I too have gastroparesis but my symptoms are not like yours. I was told by my doc that my stomach doesn't digest as fast as others. I did a fasting for a GI series and the doc still found food in my stomach 24 hours later. I also have not loss weight and I do not spend all the time in the bathroom I am just the oposite. Do you think maybe my GI doc has misdiagnosed me? I am so sick of being sick aren't You all?
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Avatar_m_tn
I will put in my 2 cents. At about 20 years as a diabetic, I developed a "slow bowel", as I was told. I suffered with the slow stomach emptying, constipation, constant gas and heartburn. I had experienced neuropathy for several years before.

I still have the slow bowel, but I no longer suffer much. I changed my diet, improved my control and treated the neuropathy (yes, it can get better)

1. I eat no red meat or other hard to digets foods. I eat fish and chicken, limited raw vegatables and eliminate anything that I can "sense" staying in my stomach too long (or better yet, see a nutricionist te get an idea of what to avoid).

2. Eating faster to digest foods makes my blood suger easier to control, as it is hard to compensate for red meat from the night before, digesting along with your breakfast or lunch.

3. I have taken 50 mg B complex daily for 15 years (100 mg made my nerves tingle) and that, coupled with better blood sugar control has stopped the neuritis progression, stopped the pain in my extremities and actually restored some lost feeling in my feet.

4. I take Tums when I have any stomach discomfort. It works and the calcium is certainly useful and safe.

I now, at 40 years a diabetic, am able to tolerate leafy green vegatables (which made me very ill before) along with other previously "banned" foods and my incidence of heartburn and stomach gas have dropped from daily to once every three to four of weeks. Red meat, unfortunatly, is still off the menu.

I know each diabetic suffers from their own set of complications, and the solutions for one may not help another. The above, however, is offered as suggestions from one who did a lot of early damage to himself, and has spent the rest of his life working hard (with much success) to recover from it.

I hope this helps someone get a little (or a lot) better.

Larry
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Avatar_n_tn
Thank you so much for your words of encouragement. I am relieved to know that someone can turn the stomach problems around. I will be venturing on the insulin pump next month to maximize my control . I pray I have the same results as you.Bless you
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Avatar_n_tn
Hi.  This is my first contact with all of you. So glad I can talk to someone (everyone)!  I have been a Diabetic for 43 years.  I am on the insulin pump which I believe has changed my life dramatically for the better.  However, over the past 4 years I have gone from 132 to 106 lbs.  Extreme nausia, loss of appetite, headaches, low blood pressure (88/44 on a good day with it dropping to 65/32 when standing up), back aches, etc.  Unable to stand for more than a few minutes due to the low blood pressure. Not sure of all this is ralated but my doctor thinks it is gastroperises which goes with all of my symptoms except for the low blood pressure.  Has anyone else experienced the problems with low blood pressure? I am on medication for this but at times I need to take 6 times as much medication (doctor's orders)in order to function at all. Really limits my activities a good part of the time. Any input will be appreciated. Thanks!
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Avatar_n_tn
Hi.  This is my first contact with all of you. So glad I can talk to someone (everyone)!  I have been a Diabetic for 43 years.  I am on the insulin pump which I believe has changed my life dramatically for the better.  However, over the past 4 years I have gone from 132 to 106 lbs.  Extreme nausia and dry heaves, loss of appetite, headaches, low blood pressure (88/44 on a good day with it dropping to 65/32 when standing up), back aches, etc.  Unable to stand for more than a few minutes due to the low blood pressure. Not sure of all this is ralated but my doctor thinks it is gastroperises which goes with all of my symptoms except for the low blood pressure.  Has anyone else experienced the problems with low blood pressure? I am on medication for this but at times I need to take 6 times as much medication (doctor's orders)in order to function at all. Really limits my activities a good part of the time. Any input will be appreciated. Thanks!
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Avatar_n_tn
Hi.  This is my first contact with all of you. So glad I can talk to someone (everyone)!  I have been a Diabetic for 43 years.  I am on the insulin pump which I believe has changed my life dramatically for the better.  However, over the past 4 years I have gone from 132 to 106 lbs.  Extreme nausia and dry heaves, loss of appetite, headaches, low blood pressure (88/44 on a good day with it dropping to 65/32 when standing up), back aches, etc.  Unable to stand for more than a few minutes due to the low blood pressure. Not sure of all this is ralated but my doctor thinks it is gastroperises which goes with all of my symptoms except for the low blood pressure.  Has anyone else experienced the problems with low blood pressure? I am on medication for this but at times I need to take 6 times as much medication (doctor's orders)in order to function at all. Really limits my activities a good part of the time. Any input will be appreciated. Thanks!
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Avatar_n_tn
Hi.  This is my first contact with all of you. So glad I can talk to someone (everyone)!  I have been a Diabetic for 43 years.  I am on the insulin pump which I believe has changed my life dramatically for the better.  However, over the past 4 years I have gone from 132 to 106 lbs.  Extreme nausia, loss of appetite, headaches, low blood pressure (88/44 on a good day with it dropping to 65/32 when standing up), back aches, etc.  Unable to stand for more than a few minutes due to the low blood pressure. Not sure of all this is ralated but my doctor thinks it is gastroperises which goes with all of my symptoms except for the low blood pressure.  Has anyone else experienced the problems with low blood pressure? I am on medication for this but at times I need to take 6 times as much medication (doctor's orders)in order to function at all. Really limits my activities a good part of the time. Any input will be appreciated. Thanks!
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Avatar_n_tn
Dear bobjash,

Thank you so much for reaching out to the Juvenile Diabetes Research Foundation. While I am a volunteer, I am not a doctor and cannot give you medical advice, I can give you my own personal experience and what I have personally learned about gastroparesis.

I am dm and answered the original question on 2/03. My son has had gatroparesis for a few years now. He has both a great endo for his diabetes and a GI doctor who is very involved with gastroparesis and diabetes. I am so glad that you are on the pump and that it has made such a difference in your life.

I have done alot of research on gastroparesis. I have learned that there can be many different symptoms in relation to this complication. In regards to people with diabetes, gastroparesis is related to diabetic autonomic neuropathy. While my son has never had the problem you have with low blood pressure your comment sent me back to review my research. I came across a website from the Mayo Clinic that speaks to the issue of low blood pressure and autonomic neuropathy. The website is http://www.mayoclinic.com/invoke.cfm?id=HO00169. The last part is H, letter O and two zeros. Just wanted to clarify that. Another website about gastroparesis from the Mayo that was most helpful is http://216.109.117.135/search/cache?p=Mayo+Clinic+Gastroparesis&ei=UTF-8&cop=mss If you have any problems finding these sites, please contact us again and I will try to help.

I would love to know what you find out. Please keep in touch. JDRF is committed to funding research for a cure and dealing with complications. Gastropareis is one complication that affects many people. I would recommend that if you respond, to come into MedHelp with a new question. This way you may see more comments from others, because of a more recent date.

I look forward to hearing from you. Thank you again.

dm
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Avatar_f_tn
i need help. it is not for me it is for my neice.she 's juvinile debetic . she wares a pump and last year she was told she had gastroprasis. she has been a juvinile diebetic (diabetic) for over 20 years. no mom or dad. husband and children have asked me to talk with here. any advise or info that i should know ? please help            
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2016586_tn?1328348534
I have been diagnosed by 2 drs. as having neurophy of the stomach.  I am a type 1 diabetic that was not diagnoised until 25 years ago and they called it type 2.  I also have the food stuck in the stomach, rancid burps, vomiting, and later a day or 2 of going to the bathroom.  At times I have thought about bringing my pillow and blanket and sleep on the stool. This usually takes a week.  I have had the radiated food test and it newer moved before they gave up.  They put me a a pill and it makes my stomach muscles work, but I am still getting sick and having to stop my life at least a week or 2 a month.  I am miserable and feel like if this is the best I can do than what is the point?  Is there hope? A doctor that cares?  anything?  Thank you Elaine
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