It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Diabetes Message Board

  • Questions for all diabetics who have Gastroparesis

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 04-28-2009, 11:01 AM   #1
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Questions for all diabetics who have Gastroparesis

    Hi,

    I am not diabetic but I know diabetes is one of the main causes for the horrible condition, gastroparesis. I have severe gastroparesis, just diagnosed one week ago. I am scared, I am only 37 years old and I feel like I will never eat a normal meal again and I will continue to deteriorate from this.

    Can any of you share with me your story of gastroparesis? When you were diagnosed, what you are doing to handle it, and if you are living close to a normal life with it? I would really appreciate it.

    The feeding tube situation scares me so much. I don't want to have to go there. I rather have my stomach removed.

    Thanks to everyone who responds.

     
    The following user gives a hug of support to Mitch5:
    LeslieJ50 (11-13-2010)
    Sponsors Lightbulb
       
    Old 04-28-2009, 11:25 AM   #2
    SamQKitty
    Senior Veteran
    (female)
     
    Join Date: Oct 2001
    Location: MA
    Posts: 3,594
    SamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB User
    Re: Questions for all diabetics who have Gastroparesis

    I don't have gastroparesis, but I know several diabetics who do or did have it. Many of them swear by alpha lipoic acid and/or evening primrose oil. I did a search on this board, and found the thread where I posted the info that one of my D friends gave me about how she had treated her gastroparesis...she had excellent success with this.

    "Sorry this took so long, but I finally heard from my friend. She took 600mg per day (in two 300mg doses) of ALA. She claims she noticed some results within 3 weeks, and it kept improving, with complete reversal in about three months. It also reversed her peripheral neuropathy (numbness.tingling in feet).

    She noted that you must take it AFTER you've eaten a full meal; otherwise it can upset your stomach (just what you don't need with gastroparesis!)

    Someone else mentioned a brand called Jarrow, which is a sustained release ALA, and apparently some people do better on the sustained release type of ALA, but I believe it's more expensive.

    Others also mentioned taking Evening Primrose Oil as well. You can find a full description of the ALA/Evening Primrose treatment in Chapter 15 of Dr. Bernstein's new book, "Revised and Updated Diabetes Solution."

    Ruth

     
    Old 04-28-2009, 12:39 PM   #3
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Re: Questions for all diabetics who have Gastroparesis

    Ruth, you made my day. You are a complete sweetheart, thank you for sharing this!

    All of this info is in Berstein's book? What is the exact title again? Oh you said.. Lol. Dr. Bernstein's new book, "Revised and Updated Diabetes Solution."

    I will hit Barnes and Noble today and grab a copy. Thanks again!

    It is very interesting because while I have not been diagnosed with diabetes (although my mother has type 2, my aunt has type 1) I am constantly considered as having "glucose intolerance" meaning, I guess, that when I get sick or if I eat and take my glucose, it will be very high, but when I fast it's never typically abnormal. I think it goes with the fact that I cannot digest carbs and sugars properly. I feel way better on a low carb diet.

    I bet that since I have this glucose intolerance, I developed gastroparesis in the same way (but probably slightly different) than a true diabetic. But it's coming from the same source if that makes sense.

    Thanks so much!

    Michelle

    Last edited by Mitch5; 04-28-2009 at 12:41 PM.

     
    Old 04-28-2009, 09:28 PM   #4
    SamQKitty
    Senior Veteran
    (female)
     
    Join Date: Oct 2001
    Location: MA
    Posts: 3,594
    SamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB User
    Re: Questions for all diabetics who have Gastroparesis

    Michelle,
    Fasting blood glucose is often the last to go bad, especially in T2 diabetics. There is also a type of diabetes variously called LADA (Latent diabetes of adult onset) or T1.5. If you don't already have a blood glucose meter, I would suggest that you get one...insurance will probably pay for it and the strips if your doctor prescribes it. I would then start testing my blood sugar two hours after meals...you can scatter which meals you test throughout the week, so you don't have to test 3 times a day. Start the 2-hour timing from when you BEGIN eating, not when you finish.

    If your numbers at the 2-hour mark are consistently greater than 160, then your doctor should be treating this more aggressively.

    Incidentally, do you have any other type of nerve damage? Any numbness/tingling in your hands or feet? I'm just worried that you may actually be diabetic but it's being misdiagnosed because your fasting numbers may still be in the range called "pre-diabetic", which is 100-125. I just realized you didn't post fasting numbers, so you should do some fasting tests as well. If you're consistently much over the 100 mark, and your post-meal numbers are consistently at or above 160, then you probably need to be treated as a diabetic.

    Meanwhile, do get the book and try the ALA...it can't hurt, and it may help tremendously.

    Ruth

     
    Old 04-29-2009, 08:03 AM   #5
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Re: Questions for all diabetics who have Gastroparesis

    Quote:
    Originally Posted by SamQKitty View Post
    Michelle,
    Fasting blood glucose is often the last to go bad, especially in T2 diabetics. There is also a type of diabetes variously called LADA (Latent diabetes of adult onset) or T1.5. If you don't already have a blood glucose meter, I would suggest that you get one...insurance will probably pay for it and the strips if your doctor prescribes it. I would then start testing my blood sugar two hours after meals...you can scatter which meals you test throughout the week, so you don't have to test 3 times a day. Start the 2-hour timing from when you BEGIN eating, not when you finish.

    If your numbers at the 2-hour mark are consistently greater than 160, then your doctor should be treating this more aggressively.
    Wow that's very interesting. I had no idea there was this diagnosis as it seems to be exactly what I could have. For example, I went in to see my internist for some nausea I was having (the beginning of the gastroparesis diagnosis) and I had eaten about 2/3 hours before I went to see her. She ordered some blood testing and my sugar level was 130. So then she had me come back fasting and ran another glucose which was 103 and that is still, as I'm looking at my healthchart, slightly above the normal GLUCOSE 103 with the normal ranges of 60-99 mg/dL . My Hemoglobin A1C was 5.7 with normal being 4.3-6.0 %. She didn't comment on the 103 or anything either. I look at my healthchart now (we have this thing at the clinic where patients can access their records online) and for a health condition it says: Impaired Fasting Blood Sugar 12/22/2006. No one has ever followed up with me on this. They just said I am borderline, whatever that means.

    Quote:
    Incidentally, do you have any other type of nerve damage? Any numbness/tingling in your hands or feet? I'm just worried that you may actually be diabetic but it's being misdiagnosed because your fasting numbers may still be in the range called "pre-diabetic", which is 100-125. I just realized you didn't post fasting numbers, so you should do some fasting tests as well. If you're consistently much over the 100 mark, and your post-meal numbers are consistently at or above 160, then you probably need to be treated as a diabetic.
    Very interesting. Yes, I have carpal tunnel syndrome in both wrists and this ALL started when my GI system was getting messed up too about a year and a half ago. Fasting numbers, I do remember they have always been fairly normal, it's only when I am eating and they do a random test or I am sick and they will be high. However I just noticed like I posted above that 103 was fasting and it was high normal.

    I am following up with my internist on blood testing for this gastroparesis on Friday to see if I have a cause for it and I will certainly talk to her about this. I know she will definitely run some bloodwork for diabetes then.

    The carpal tunnel, man, I never realized that can be a sign, too, right?

    Quote:
    Meanwhile, do get the book and try the ALA...it can't hurt, and it may help tremendously.

    Ruth
    Thanks! I called my local Barnes and Noble and that location, along with the next 3 closest were out of the book (seems to be quite popular!) so they ordered me a copy and they'll call me the minute it comes in which should be in the next few days.

    Michelle

    ETA: In looking at some of the notes here I see my doctor says this:

    Notes recorded by Sonja Short on 11/17/2006 at 5:27 PM
    Hi-

    Your blood sugar is in the diabetic range. This could be random variation, and needs to be repeated again while fasting to confirm. Your insulin level is high which would go along with diabetes.

    Insulin 26
    Reference Range: 0-20

    and then this:

    Your glucose was back to normal, so you do not have diabetes, just impaired glucose tolerance. This is a pre-diabetic condition. Please schedule an apopintment with me to discuss in more detail.

    ==============

    This was even back in 2006!

    They have flirted with this diagnosis off and on, and then on further testing they shut it down or think it's not bad enough. But I find it interesting how I have the carpel tunnel and now, gastroparesis, going on. There is no doubt in my mind now that the gastroparesis has developed DUE to a diabetes cause.

    Last edited by Mitch5; 04-29-2009 at 08:14 AM.

     
    Old 04-29-2009, 03:40 PM   #6
    SamQKitty
    Senior Veteran
    (female)
     
    Join Date: Oct 2001
    Location: MA
    Posts: 3,594
    SamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB User
    Re: Questions for all diabetics who have Gastroparesis

    Okay, Michelle...that information leads me to suspect that you've been pre-diabetic for a very long time, and someone should have advised you to start watching your diet and adding exercise in so that you don't develop full-blown diabetes. Your A1c isn't bad at all, and neither is that one fasting of 103...but 100 is now the cut-off for diagnosing pre-diabetes or impaired glucose tolerance, and that's when we need to take charge to prevent it from getting worse.

    Here's the thing...no one knows exactly why some people (diabetics, that is) develop complications and others don't. Studies have been done which do show that tight control definitely minimizes complications, but there's still a certain percentage of people who achieve tight control and still develop complications, as well as a certain percentage of people who have not-so-great control and don't develop complications. And, some people develop complications quickly while for others it takes many decades of poor control.

    If all your numbers were absolutely perfect, I'd say..."hmm, maybe there's another reason for gastroparesis?" But given that you've probably been borderline for a few years at least, I'd suggest that you ask for a referral to a registered dietician for advice on eating/meal planning/carbohydrate counting...or read it in Dr. Bernstein's book. Most of us can't achieve quite as low daily carb intake as he does, but you can aim for that and you're certain to improve your diet dramatically. And again...I really think you should ask your doctor to prescribe a blood glucose meter. An occasional random fasting glucose just doesn't give a complete picture. Even the A1c, while providing more information than a random bg check, can be skewed. It's supposed to measure your average bg over the past 8-12 weeks, but it's more heavily weighted toward the end of that period, and if you have lots of low bgs and only occasional highs, that can skew it too. Example...let's say you have it taken the week after the Christmas holidays, and let's say you overate a lot during the holidays...your A1c would be much higher than if you took it, say, 12 weeks AFTER the holidays and your diet was much better for the last 8 weeks of that period.

    This is the part of what you posted that I find interesting: "Your glucose was back to normal, so you do not have diabetes, just impaired glucose tolerance. This is a pre-diabetic condition. Please schedule an apopintment with me to discuss in more detail." Did they ever discuss it in more detail? Did they recommend a diet and/or exercise plan? DID they refer you to a registered dietician for advice on meal planning? If not, they should have!

    Ruth

    Last edited by SamQKitty; 04-29-2009 at 03:42 PM.

     
    Old 04-29-2009, 08:25 PM   #7
    jamman3
    Senior Member
    (male)
     
    jamman3's Avatar
     
    Join Date: Apr 2009
    Location: caledonia wisc usa
    Posts: 106
    jamman3 HB User
    Re: Questions for all diabetics who have Gastroparesis

    Is there any relationship to high blood sugars .with diabetic patients having digestive problems. I have gastroparesis and a barret esophagus for wich i,ve been on metaclopramide and omeprazole. not that I know what im talking about but does the slow digesting of food and the acid reflux prolong my higher blood sugars

     
    Old 04-29-2009, 08:39 PM   #8
    SamQKitty
    Senior Veteran
    (female)
     
    Join Date: Oct 2001
    Location: MA
    Posts: 3,594
    SamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB User
    Re: Questions for all diabetics who have Gastroparesis

    I'm not sure if the acid reflux affects bg's that much, but the slow stomach emptying definitely does. Diabetics who take insulin, and even some of the oral medications, have a harder time matching the insulin to when their blood sugar will start to rise after eating if they have gastroparesis.

    Ruth

     
    Old 04-30-2009, 01:47 PM   #9
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Re: Questions for all diabetics who have Gastroparesis

    Quote:
    Originally Posted by SamQKitty View Post
    Okay, Michelle...that information leads me to suspect that you've been pre-diabetic for a very long time, and someone should have advised you to start watching your diet and adding exercise in so that you don't develop full-blown diabetes. Your A1c isn't bad at all, and neither is that one fasting of 103...but 100 is now the cut-off for diagnosing pre-diabetes or impaired glucose tolerance, and that's when we need to take charge to prevent it from getting worse.
    Interesting. Another bit of info is this... my Aunt I mentioned was type 1? Well years ago she had her glucose testing kit thingy out and a bunch of us, cousins and other relatives, were just testing our blood sugars to see what we all were. She had literally a million of those strip thingys out so we did that... anyway, this was about 1 hr after breakfast and I kid you not, I was the one with the HIGHEST readings! Both my mom and aunt couldn't believe this, I had higher numbers then they did and the rest of my family as well. Both my mom and aunt told me to get to a doctor to investigate this which is what I attempted to do but with no luck. This must have been at least 6/7 years ago.

    Quote:
    Here's the thing...no one knows exactly why some people (diabetics, that is) develop complications and others don't. Studies have been done which do show that tight control definitely minimizes complications, but there's still a certain percentage of people who achieve tight control and still develop complications, as well as a certain percentage of people who have not-so-great control and don't develop complications. And, some people develop complications quickly while for others it takes many decades of poor control.

    If all your numbers were absolutely perfect, I'd say..."hmm, maybe there's another reason for gastroparesis?" But given that you've probably been borderline for a few years at least, I'd suggest that you ask for a referral to a registered dietician for advice on eating/meal planning/carbohydrate counting...or read it in Dr. Bernstein's book. Most of us can't achieve quite as low daily carb intake as he does, but you can aim for that and you're certain to improve your diet dramatically. And again...I really think you should ask your doctor to prescribe a blood glucose meter. An occasional random fasting glucose just doesn't give a complete picture. Even the A1c, while providing more information than a random bg check, can be skewed. It's supposed to measure your average bg over the past 8-12 weeks, but it's more heavily weighted toward the end of that period, and if you have lots of low bgs and only occasional highs, that can skew it too. Example...let's say you have it taken the week after the Christmas holidays, and let's say you overate a lot during the holidays...your A1c would be much higher than if you took it, say, 12 weeks AFTER the holidays and your diet was much better for the last 8 weeks of that period.
    Makes perfect sense. Thanks for explaining. I will discuss ALL of this tomorrow. In fact I think I might even print out your post and show my doctor to discuss this with her.

    Quote:
    This is the part of what you posted that I find interesting: "Your glucose was back to normal, so you do not have diabetes, just impaired glucose tolerance. This is a pre-diabetic condition. Please schedule an apopintment with me to discuss in more detail." Did they ever discuss it in more detail? Did they recommend a diet and/or exercise plan? DID they refer you to a registered dietician for advice on meal planning? If not, they should have!

    Ruth
    Yep, I totally remember when this email came in, and yes, I did schedule a follow up, but all my internist basically did was talk to me very superficially about diet control and that was really about it. Nothing in depth, not even one word about seeing a dietician, nothing! She told me I was at greater risk of eventually developing it full blown due to the genetic aspect with my mother and aunt, she said to "watch" my diet without really telling me any particulars and we would keep an eye on my glucose readings. That's it! Oh I did have to drink some stuff though one time. Hmm, it was like a sugary mix and then they took my levels at different intervals. They said I passed that but never revealed my numbers, that was the end of it. But I've continued to get the "borderline" numbers ever since.

    Be sure I am discussing this with my doctor tomorrow. Barnes and Noble is calling me hopefully within the next day or two saying the book is in, I will pick that up, and I will certainly get to the bottom of this.

    Thanks so much for all your help!

    It's been fun talking to you, would love to continue to do so in the future.

    Michelle

    ETA: My mom even said to me yesterday, "I bet you developed gastroparesis due to your blood sugar readings being so unreliable in the past 10 years or so." I told her I think she is right.

    Last edited by Mitch5; 05-01-2009 at 05:40 PM.

     
    Old 04-30-2009, 07:06 PM   #10
    SamQKitty
    Senior Veteran
    (female)
     
    Join Date: Oct 2001
    Location: MA
    Posts: 3,594
    SamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB User
    Re: Questions for all diabetics who have Gastroparesis

    Yes, Michelle, I think your mother is probably right, too.

    Good luck with your doctor appointment...let us know how it goes. I would absolutely insist that she diagnose you with impaired glucose tolerance so she can prescribe a blood glucose meter and test strips. You don't need to test 10 times a day, like many of us diabetics do, but you should probably be testing at least 3-4 times a week, scattering the tests between am fastings, and 2-hours after breakfast, lunch and dinner. Keep a log, and not only will that tell you if you've got some highs in there, but it'll also show you how your body reacts to certain foods.

    Ruth

    Last edited by SamQKitty; 04-30-2009 at 07:08 PM.

     
    Old 05-01-2009, 05:36 PM   #11
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Re: Questions for all diabetics who have Gastroparesis

    Man, my appointment was a disaster. I attempted to talk to my doctor about this and she kept insisting I was not diabetic and impaired glucose would not cause or contribute to gastroparesis! I went on and on with her and then she goes, "Well you're going to Mayo Clinic in 10 days, they are the best, if you have any type of blood sugar problem due to the gastroparesis they will find it." I was totally furious. Looks like I will be changing internists after my trip to Mayo. So annoying. She is right about one thing, I will talk to the experts at Mayo and they will listen. So I will get to the bottom of this whenever I hit Mayo on May 11th for my full work up on gastroparesis.

    Man it's unreal how dumb and ridiculous MDs can be! Some can be life savers, others can literally act like they were sleeping through all of their medical courses!

    Last edited by mod-anon; 05-01-2009 at 07:40 PM. Reason: removed quote

     
    Old 05-02-2009, 12:11 PM   #12
    SamQKitty
    Senior Veteran
    (female)
     
    Join Date: Oct 2001
    Location: MA
    Posts: 3,594
    SamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB UserSamQKitty HB User
    Re: Questions for all diabetics who have Gastroparesis

    Well...I see her point up to a point. It is, indeed, possible to develop gastroparesis without being diabetic. But it is also possible to be having major blood glucose problems without your fasting bg's showing high. In other words, you could be seriously insulin-resistant and your numbers could be quite high after eating, but still come down after an overnight fast. True, one would think your A1c would be higher in that case...but it's possible that sometimes you're high and other times not so high...so it might depend on when the A1c was done.

    I think it's a good thing you're going to the Mayo...see what they have to say and then, after that you can decide whether or not you need to get a new primary care doc.

    Good luck, Michelle...and do let us know what happens at the Mayo.

    Ruth

     
    Old 05-02-2009, 01:55 PM   #13
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Re: Questions for all diabetics who have Gastroparesis

    Thanks, I will.

    The thing is, I know what happens to me with and without food as well. If I haven't eaten in a while I can feel lightheaded, ansy, basically I feel off. I get headaches when I eat too much sugar, I cannot take a lot of carbs. Even taking away the fact that my numbers have not always fallen totally normal, it's how my body feels and I haven't felt right in a long while. So who knows. Mayo will tell the story I guess.

     
    Old 05-02-2009, 08:01 PM   #14
    Mitch5
    Member
    (female)
     
    Mitch5's Avatar
     
    Join Date: Apr 2009
    Location: USA
    Posts: 80
    Mitch5 HB User
    Re: Questions for all diabetics who have Gastroparesis

    For anyone that is taking alpha lipoic acid... I have been searching around to buy this and I was wondering if there's a certain brand that's very good? Would a local health food store carry this? I might go ahead and try this before my Mayo appointment because no matter what something is causing the nerves in my stomach to not work right, either that or my muscles, but if it's more nerve related this could help me regardless of my cause for gastroparesis.

    So yeah if anyone has info on alpha lipoic acid as far as purchasing, I would really appreciate it. Thanks.

    Last edited by Mitch5; 05-02-2009 at 08:02 PM.

     
    Old 05-21-2009, 06:15 PM   #15
    MyStomachHurts
    Newbie
    (female)
     
    MyStomachHurts's Avatar
     
    Join Date: May 2009
    Posts: 3
    MyStomachHurts HB User
    Re: Questions for all diabetics who have Gastroparesis

    I am a diabetic and I think I have gastroparesis. Did you try the Alph Lipoic Acid? Did it help at all? I took one tablet of Reglan while in the hospital for diabeties and I really didn't feel well on that drug. Now I'm on Prilosec and it works for a few hours, but I feel pressure in my head when I take it, Doctor's think I'm dreaming or have a headache which is not true. Does anyone else know what other med's if any are available for gastroparesis? I hurt!

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    For those with gastroparesis (two questions) DunkinNut Digestive Disorders 7 11-13-2010 08:34 PM
    Answering questions about gastroparesis flowergirl2day High & Low Blood Pressure 10 09-22-2008 10:34 PM
    Do I Have Gastroparesis or not? redbarronsnoopy Diabetes 4 09-04-2006 09:15 AM
    survived Diabetic Crisis: Questions FoolsGold Diabetes 18 06-08-2006 12:13 AM
    gastroparesis and Reglan questions... moesciphish Digestive Disorders 5 04-19-2006 10:52 PM
    Newly diagnosed type 2, underweight, and protein questions FireWoman Diabetes 5 02-15-2005 02:52 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:38 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!