Nausea/vomiting/Celiac Disease

[MOONGLOW]

I have been bothered with IBS and GERD for almost 30 years, it appeared approximately 6 weeks after gallbladder surgery in 1972.   In 1999 I was diagnosed with pyloric stenosis.   In 2001 I had a Nissen Fundoplication done due to Barrett's (they did not do a pyloroplasty).   Since that time I have had nothing but trouble, severe nausea, vomiting, weight loss and dumping syndrome.  I have had so many upper endoscopies and colonoscopies.  In 2002 I was diagnosed with gastroparesis on 3 different gastric emptying studies that is very significant.  In 2003 after many dilatations of my pylorus, I was diagnosed with Celiac Disease via the video capsule (all previous biopsies had been negative).  The diarrhea has completely resolved unless I ingest gluten unintentionally.   I have been to a surgeon regarding the Medtronic pacemaker, but it has not been approved yet and he cannot place it.  I am scheduled for another endoscopy on Monday to have the pylorus dilated again.  The surgeon and gastroenterologist do not want to do the pyloroplasty due to dumping syndrome.   I am so digusted with everything.  I cannot live the rest of my life with chronic nausea, bloating, pain and being so uncomfortable.  Is this unusual to have so many different things going on at once?  I have found the best GI doc around...after all of these years, he has been the only one that has given me some relief and I trust him, but I saw your web site and just wanted to see what your thoughts were on this and are there other people out there with so many different things going on.  My grandfather died of esophageal cancer and a grandmother died of non-Hodgkin's lymphoma (I think due to untreated celiac disease).  I am 52 years ago and just want to enjoy life to the fullest and this is making it very difficult.  

My insurance company has suggested a consult to the Cleveland Clinic (I think they are tired of paying for all of the procedures), but I don't want to start all over again.  

I don't know whether to push for the pyloroplasty and take my chances on the dumping syndrome or not.  The way my luck has been I will probably get it.  

I would just like your thoughts on this.  

Thank you so much.  

[MOONGLOW]

I just got out of the hospital and diagnosed with severe gastroparesis.  GI doc referred me to the Cleveland Clinic to see a Dr. Soffer.  Is this the GI doc you saw there or have you heard of him?

[MOONGLOW]

I had botox injected twice.  The first time no improvement at all.  He repeated the procedure two weeks later and still no improvement.  He sent me for another gastric emptying study 5 days later and it was still significantly delayed.  I had another endoscopy done yesterday and he said my stomach was full of food and that it was not moving anything.  He suctioned the food out.  He had this look on his face and I know he doesn't know what to do next.  He just stood there and said he was puzzled.  I started on the domperidone again.  I am just going to drink liquids and see if I can get some relief from that.  I don't want to have the enterra therapy either because they told me that all it does is relieve the symptoms of nausea and not the distress I am also feeling.  I guess it is back to the drawing board. Thanks so much for your comments.

[MOONGLOW]

Just came back from having my EGD and my pylous was open but my stomach was full of food from the day before.  He said that it is my gastroparesis.  He suctioned it out, but still feel sick.  He is starting me back on domperidone again thinking that maybe it will work this time because when I took it before my celiac disease was not diagnosed yet.  I am so tired of being sick.  I feel there are no options for me.  It is so hard to go to work when I am nauseated all the time.  Go back in two weeks, maybe some wonderful miracle drug or procedure will become available by then...yeah right.  Now I am really, really depressed.

[Kevin Pho, MD]

There are some other considerations that can help your nausea.  I would assume that most of the traditional medications have already been tried - including Reglan, Erythromycin, or Tegaserod.  Other options would include injection of botulinum toxin into the pylorus which in small studies have shown some improvement in symptoms.

If these options have been considered, surgery can be considered as an alternative.  You're right in that gastric pacing is only indicated for compassionate use - however, you may inquire about participating in an academic study that may involve this.  

Regarding the referral - I would suggest pursuing this in hopes of encountering a direction that hasn't been tried before.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[Wussin]

i have been having nausea and vomiting related problems for almost a year now. i have gotten both the endoscopy and the colonoscopy done and relults showed nothing. it was so devastating...i am now scheduled to have a HIDS Scan of the gallbladder with and EF. i am not sure what the EF stands for but im praying they find out whats wrong with me. the craziest part about everything is that i am only 20 years old, so the doctors are confused a bit, i'd say. i have been vomiting in the morings every morning and they put me on meds (i have no insurance) called Zofran which is actually used foe chemotherapy patiets and they cost $35.00 a pill. its so scary...id love some support or even comments.thanks for listening.

[tessa0825]

Just something to think about in reference to Cleveland Clinic..I also have barrett's and many other GI problems..I was sent to CCF last year by my local GI and I have nothing but good things to say about their Drs.(That does not include the facility itself) I had surgery there this last Sept. it was a gastroplasty/fundoplication performed by the head of thoracic surgery (Dr. Thomas Rice) He is wonderful...I had a very damaged esophagus and surgery certainly did not resolve all the problems, and I might have had to high of expectations but as far as this surgeon goes, if ever I need more work it will be him I have do it....The only downfall with a place like CCF is you dont receive the same level of personal care that you receive from your local Drs. but they are expert in what they do and you would receive a very through evaluation.....Good luck, Tessa

[tessa0825]

I also wanted to tell you that they are very good at putting all the pieces together...My surgeon there referred me to their heart center for evaluation who in turn sent me for a pulmonary evaluation....When it was all said and done I was diagnosed with systemic sclerosis and found that all my problems were dircetly related to that illness...Without going there Im sure that diagnosis would have not been made locally and treatment would have been delayed.......I wish you the best of luck, Tessa