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Please Bare With My Confusion

Layla26

By Layla26
in Related Issues & Disorders

Recommended Posts

Layla26 Newbie
Layla26
Posted

Okay..Hi everyone..My name is Kayla and I am currently Pre-Celiac diagnosed. However As of 9/11/08 I am post diagnosed Gastroparesis. Some of you may be wondering why I bring this diagnoses up on Celiac.com, well I was actually trying to research "Gastroparesis Low-residue diets and the topic gastroparesis after Celiac disease diagnoses came up. Long story short I was lead to this wonderful site where it was posted and I since registered, however once I did so I can no longer find those particular posting's once logged in.

I hope I'm welcome in this part of the forum. A little about me is I have suffered from severe chronic nausea for nearly 2 years..I got several reasons why I was suffering from the nausea and given medication's which didn't help. Needless to say I was never once sent to a G.I. specialist for my problems to see what the true under lying problem was until August of this year. Leaving me untreated for so long I developed more severe problems, I now have the severe nausea..including constipation and or diarrhea at all times, abdominal pain, a bloating/full feeling. I am severly fatigued sleeping any where from 12-24 hours straight and I feel weak most of the time. So i'm sure your aware sleeping those hours I don't intake the proper amount of fluids along with the nausea thus leaving me dehydrated most of the time. Enough of that for now :(

So I guess my question is.... are Celiac Disease and Gastroparesis often linked together?? All I do know right now is that i'm VERY miserable! Even with the changes i'm making for the Gastroparesis i'm still greatly uncomfortable and nothing is changing as of yet.

I'm sorry my post is so long, I don't really know what to and not to say. I hope I didn't confuse anyone! I'm just a confused soul myself. Thank You for your time!

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Juliebove Rising Star
Juliebove
Posted

I have gastroparesis but not celiac. Mine if from diabetes. That (I believe) is the leading cause of gastroparesis. I rarely feel sick to my stomach any more. Used to all the time but didn't know about my food allergies. Since I have changed my diet, am no longer sick all the time. I still have to be careful though and not eat too much fat or fiber.

Layla26 Newbie
Layla26
Posted
  • Author
I have gastroparesis but not celiac. Mine if from diabetes. That (I believe) is the leading cause of gastroparesis. I rarely feel sick to my stomach any more. Used to all the time but didn't know about my food allergies. Since I have changed my diet, am no longer sick all the time. I still have to be careful though and not eat too much fat or fiber.

Hi, thank you for responding. That I am finding to be worrie some. I am reading that diabetes is the leading cause for Gastroparesis like you said, and what bother's me about that is I was diagnosed with type 2 diabetes for a little over 2 years. I was just about 2 1/2 months ago able to get that diagnoses off my back because my sugar levels have been doing great. Now I'm reading that if you do not have it already though, having Gastroparesis gives you a higher risk for diabetes because it leaves the food in your stomach undigested for long periods of time. Now, I feel like okay am I at an even higher risk for the diabetes to come back?? This is very overwhelming. Did you have these feeling's when you where diagnosed?

ravenwoodglass Mentor
ravenwoodglass
Posted
Okay..Hi everyone..My name is Kayla and I am currently Pre-Celiac diagnosed. However As of 9/11/08 I am post diagnosed Gastroparesis. Some of you may be wondering why I bring this diagnoses up on Celiac.com, well I was actually trying to research "Gastroparesis Low-residue diets and the topic gastroparesis after Celiac disease diagnoses came up. Long story short I was lead to this wonderful site where it was posted and I since registered, however once I did so I can no longer find those particular posting's once logged in.

I hope I'm welcome in this part of the forum. A little about me is I have suffered from severe chronic nausea for nearly 2 years..I got several reasons why I was suffering from the nausea and given medication's which didn't help. Needless to say I was never once sent to a G.I. specialist for my problems to see what the true under lying problem was until August of this year. Leaving me untreated for so long I developed more severe problems, I now have the severe nausea..including constipation and or diarrhea at all times, abdominal pain, a bloating/full feeling. I am severly fatigued sleeping any where from 12-24 hours straight and I feel weak most of the time. So i'm sure your aware sleeping those hours I don't intake the proper amount of fluids along with the nausea thus leaving me dehydrated most of the time. Enough of that for now :(

So I guess my question is.... are Celiac Disease and Gastroparesis often linked together?? All I do know right now is that i'm VERY miserable! Even with the changes i'm making for the Gastroparesis i'm still greatly uncomfortable and nothing is changing as of yet.

I'm sorry my post is so long, I don't really know what to and not to say. I hope I didn't confuse anyone! I'm just a confused soul myself. Thank You for your time!

There are some of us that will have gastroparesis that is linked to the celiac disease. Gastroparesis in common english means literally 'partially paralyized stomach'. Something is effecting the nerve function of the stomach and messing it up. Your symptoms do sound like you could be one of us. The severe fatigue and weakness may also be an indication of neuro involvement especially if you suffer migraines or have balance issues. It could also be due to the severe nutritional deficit that your body is trying to function under. One thing that may help and won't interfer with the celiac diagnositic process is if you add a sublingual B12 to your diet. Make sure it is gluten free of course. The sublingual is really important as your intestines are damaged and you won't get benifit from a regular oral vitamin. Do continue to pursue testing and after you are done with the testing make sure you give the diet a good strict try for at least 6 months. Testing is far from perfect and many of us get missed so even if tests are negative a dietary trial is advised.

JulesNZN Newbie
JulesNZN
Posted

Open Original Shared Link

This is where I learned some of my information, I have several other websites.

I also have gastric paresis and I also have Celiacs.

It is two separate yet related and I do not have DIABETES. actually the one thing that is good is my blood sugar. What medication are you taking for Gastricparesis?? That could make a difference!

I take a medication not approved by the FDA that is approved in every other country in the world, not a joke. I also take an antiemetic (its expensive) but covered by insurance and only allowed to give me a days worth a week so I supplement with Dramamine as it is OTC and inexpensive. The antiemetic I take that is Rx cost about 200 dollars for one day supply!!!!

Julie

Layla26 Newbie
Layla26
Posted
  • Author
Open Original Shared Link

This is where I learned some of my information, I have several other websites.

I also have gastric paresis and I also have Celiacs.

It is two separate yet related and I do not have DIABETES. actually the one thing that is good is my blood sugar. What medication are you taking for Gastricparesis?? That could make a difference!

I take a medication not approved by the FDA that is approved in every other country in the world, not a joke. I also take an antiemetic (its expensive) but covered by insurance and only allowed to give me a days worth a week so I supplement with Dramamine as it is OTC and inexpensive. The antiemetic I take that is Rx cost about 200 dollars for one day supply!!!!

Julie

Hi Julez, currently my G.I. doctor only has me taking Reglan 30 minutes before I eat something and has me on a low-residue diet. She want's me to consume 6 small meals a day and that just isn't happening! I have no desire to eat with the way I feel, it's hard enough to eat once a day for me. Maybe because i'm just starting this...i'm not sure. I'm definately hopeing for a change soon!! Thank You for your reply!

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi Julez, currently my G.I. doctor only has me taking Reglan 30 minutes before I eat something and has me on a low-residue diet. She want's me to consume 6 small meals a day and that just isn't happening! I have no desire to eat with the way I feel, it's hard enough to eat once a day for me. Maybe because i'm just starting this...i'm not sure. I'm definately hopeing for a change soon!! Thank You for your reply!

Layla,

It is extremely important to try and eat six times a day as your doctor is saying. I can't stress that enough. Your stomach has kind of 'forgotten' how to do it's job and it needs to be reprogrammed so to speak. That does not mean you have to sit down a regular sized meal. Start out with even just a couple of bites if that is all you can tolerate but do your best to eat at the schedule he has set. It will be hard at first but you will be able to eat more normally in time. If your doctor did not refer you to a dietian then ask for a referral, they might be helpful.

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Darn210 Enthusiast
Darn210
Posted

My daughter was diagnosed with Celiac and Gastroparesis within about 10 days of each other. She was on a low dose of Ethromycin (sp?) for a couple of months to speed up her motility. The GI thought the gastroparesis was a result of damage from the Celiac and expected it to go away which it appears to have done (it took about a year) however she never had a repeat GES done. I will say that she really did not have a problem with being "too full" to eat even when she was first diagnosed but kids tend to be snack-all-day-long/why-would-I-eat-fiber kind of eaters anyway.

Layla26 Newbie
Layla26
Posted
  • Author
My daughter was diagnosed with Celiac and Gastroparesis within about 10 days of each other. She was on a low dose of Ethromycin (sp?) for a couple of months to speed up her motility. The GI thought the gastroparesis was a result of damage from the Celiac and expected it to go away which it appears to have done (it took about a year) however she never had a repeat GES done. I will say that she really did not have a problem with being "too full" to eat even when she was first diagnosed but kids tend to be snack-all-day-long/why-would-I-eat-fiber kind of eaters anyway.

Hi Raven, I never looked at it that way. I'm making changes as far as my diet, it's just getting use to eating again especially feeling so sick all the time. That and my sleeping schedule is so off it's going to be hard to get on a normal eating schedule but, I know I have to try.

Janet i'm so happy to hear that your daughter is now doing so well. I hope with time I will learn more ways to reduce my symptom's and have relief as well.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi Raven, I never looked at it that way. I'm making changes as far as my diet, it's just getting use to eating again especially feeling so sick all the time. That and my sleeping schedule is so off it's going to be hard to get on a normal eating schedule but, I know I have to try.

Janet i'm so happy to hear that your daughter is now doing so well. I hope with time I will learn more ways to reduce my symptom's and have relief as well.

You can adjust the timing to what your waking hours are for the day. How long before your celiac testing? Make sure you get yourself gluten free as soon as the testing is done, no matter what the result. I think you will find that you are able to eat more normally once you are gluten-free and your body is not dealing with the 'what are you giving me this poison for' reaction. It is hard to eat when eating makes you feel ill. It does take some time to heal and I do know how hard it is to be patient with that. I hope you are able to do a dietary trial of gluten-free soon if you haven't already.

Layla26 Newbie
Layla26
Posted
  • Author
You can adjust the timing to what your waking hours are for the day. How long before your celiac testing? Make sure you get yourself gluten free as soon as the testing is done, no matter what the result. I think you will find that you are able to eat more normally once you are gluten-free and your body is not dealing with the 'what are you giving me this poison for' reaction. It is hard to eat when eating makes you feel ill. It does take some time to heal and I do know how hard it is to be patient with that. I hope you are able to do a dietary trial of gluten-free soon if you haven't already.

I have already done my blood testing for the Celiac, but I still have to do the stool testing which I will hopefully get done tomorrow. The last 3 days have been really rough, so i'm going to the doctor in the morning. Hopefully soon I will know something. Thank's Raven, take care!

  • 2 weeks later...
JulesNZN Newbie
JulesNZN
Posted
Hi Julez, currently my G.I. doctor only has me taking Reglan 30 minutes before I eat something and has me on a low-residue diet. She want's me to consume 6 small meals a day and that just isn't happening! I have no desire to eat with the way I feel, it's hard enough to eat once a day for me. Maybe because i'm just starting this...i'm not sure. I'm definately hopeing for a change soon!! Thank You for your reply!

I TOOK REGLAN AND IT HAS SIDE EFFECTS WITH THE WAY YOUR BRAIN FUNCTIONS. IT DID NOT HELP ME BUT MADE ME VERY SICK AND I ALMOST DIED. I AM SEEING A SPECIALIST IN BOSTON AT TUFTS MEDICAL AND I HAVE NOT FELT THIS GOOD IN OVER 10 YEARS. I AM NOT SAYING IT DOES NOT HAVE SIDE EFFECTS BUT I HAVE NOT BEEN NAUSEAUS FOR 3 DAYS AND I DON'T GET NAUSEAUS EVERY DAY. I EAT ONLY 3 MEALS A DAY. I TAKE MOTILIUM, I HAVE TO HAVE IT MAILED TO ME FROM NEW ZEALAND. REGLAN CAUSES ALTERED THINKING IN YOUR BRAIN AND CAN BE DANGEROUS.

IF YOUR DOCTOR WILL NOT PRESCRIBE SOMETHING ELSE, FIND A NEW DOCTOR. REGLAN IS NOT THE ANSWER FOR A LOT OF PEOPLE. IF YOU WANT TO EMAIL ME, MY ADDRESS IS JULIE.ENZIAN@STATE.MA.US.

IT WAS A VERY HARD UPHILL STRUGGLE FOR ME TO GET BETTER AND I DID NOT HAVE ANYONE TO HELP ME FIND THE RIGHT ANSWER. I HAVE TO SAY MY DOCTOR IS AMAZING NOW AND I AM SO GLAD I LIVE NEAR BOSTON!!!

  • 2 weeks later...
Jaimepsalm63 Rookie
Jaimepsalm63
Posted

I have both gastroparesis and celiac. I took all the recommended meds, except the Erythromycin because I'm allergic. It was found out I was allergic to it all. They haven't tried me on the Marinol and are thinking about it, but I have 3 kids I'm raising so I've already declined. The Zofran is sooooo expensive and is the only thing that helps me not get sick so I can eat. Because of limited income, I have a choice of feeding the family or my meds and being on a liquid diet.

Now, I don't have diabetes at all and keep getting tested every couple of months because they try to tell me it's related. My GI said I have idiopathic gastroparesis.

I've heard you can get a pace maker put in to help the stomach muscles work. It's a thought for me because insurance won't pay for it. For you....it may be a reality to help be able to have a more "normal" life. I went to g-pac.org website and got a special card to show people when I go out to eat about why I need a smaller meal. I hand this to them with the Celiac card. The manager's I've dealt with have been very kind and helpful with both.

mindwiped Rookie
mindwiped
Posted

Jaimepsalm63-

My Aunt in Law (husband's aunt) attempted to have a Vegas nerve pacemaker installed to help with stomach issues (please forgive if I'm misnaming or misspelling the nerve, I'm trying to remember events from 6 years ago, and names of nerves aren't high on the remembering priority) Basically the doctor screwed up and SEVERED the nerve by accident. Now her issues are much more severe, which I personally think her mental issues are aggravating her stomach issues, and vice versa. Please find a doctor with an excellent surgical history with this procedure, and DON'T go to a teaching hospital. A doctor at KU Med screwed he up, and now she's trying to get by with the medicines that were unsuccessful, because the doctor left her no other option

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