allergies and gallbladder question

[Denna]

My son is 16 and has had stomach aches and diarrhea for over a year.  He has food allergies and an endoscopy about 14 months ago confirmed high eosinophil levels. On the basis of this result, he was diagnosed as having eosinophilic gastroenteritis and put on a  very restricted diet including almost four months on an elemental diet (vivonex). Even when he was drinking only vivonex, he continued to have nausea and chronic diarrhea. The elemental diet was stopped three months ago and the diet expanded somewhat. A month ago, another endoscope study showed the eosinophils were cleared.  However, he still has chronic diarrhea and stomach aches, often more so at night (10 pm to midnight). Recently, a HIDA scan with CCK showed a 6% ejection fraction but he does not have other symptoms consistent with gallbladder disease.  His pain is in his lower stomach (around the belly button), not sharp, not associated with eating fatty meals and he did not have pain during the HIDA scan when they injected the CCK (apparently this is significant).   He has had lots of blood tests, scans etc.  Other info that may be relevant is that he has high creatinine levels, high total protein, high cholesterol (sometimes), high glucose (sometimes), high HCT, HGB,high acidip acid, low acetylcarnitine and low IGG3 levels.  An ultrasound and CT scan were negative although they mentioned there was a large amount of fecal matter in the colon.  CSDA studies show putrefactive SCFA's are high and some dysbiosis.  Also, bile acids were high.    

Is there a possible explanation for the diarrhea that we have not explored? Are there tests that should be done that haven't that may explain the stomachaches and diarrhea and could the diarrhea be explained by gallbladder disease, even without any other symptoms.  The GI wants to remove the gallbladder but the surgeon has said we shouldn't.  We are desperate to get him back to school and let him get on with his life.
Thanks

[Denna]

Thanks for the responses.  I will follow up on another opinion concerning surgery and also check into Cincinnati.  Thank you.

[CINDY4]

My 11 yr old daughter is very much like your son.  She also has eosinophilic gastroenteritis, and had suspected gallbladder problems.  She actuallly has a systemic eosinophilic syndrome, that is in 4 organs.
She also had a HIDA scan with a 16% ejection fraction, and she did have pain with the CCK. Her dr said the gallbladder had to go and for a short time she did seem better, but the pain came back along with constant diarrhea, nausea, and dry heaving. Since we already knew she had eosinophils in all these other organs it was highly suspected they were the problem.  Scopes have now shown she does have eos from one end of her GI tract to another.  This was probably her problem all along.  However, the pathology on her gallbladder did show chronic inflammation. It is a hard call to make. I am still not sure if it helped or not, since she has so much going on anyway.

You mentioned he had endoscopies showing eosinophils.  Has he had a colonoscopy?  The diarrhea is more of a sign of colon or small bowel problem.  My daughter had the eos the worst in her colon and she is just like your son with terrible diarrhea and nausea. Maybe if he had a colonoscopy that could answer the problem.  We actually go to CIncinnati CHildren's to a group of drs who are the leading experts in eosinophilic GI disease in the US.  They have said if eos are in the colon it is more of an autoimmune process than an allergic reaction and the diets will not help.  You have to be on immune supressing drugs such as steroids. High dose steroids are the only thing that stops all the pain and diarrhea my daughter has.  These eosinophils are very persistant they just keep coming back.  My daughter has now been on systemic steroids for 3 years.  Every time we really try to cut back her dose past 10 mg her eos blood counts rise, and she has more problems. Even at that dose the disease has progressed and gotten more severe, and we even added an additional chemo drug.  She is now taking 80 mg daily steroids for the next several months to knock these cells out hopefully.  This is a very hard disease to really get and keep control of.  

The gallbladder may be an issue, but you may want to further look at the possiblity of eos being in other areas of his GI tract first.  Hope you all get it figures out.  If I can help with anything let me know.

Cindy

[Kevin Pho, MD]

I would consider more specialised testing for malabsorption - which can cause chronic diarrhea.  This can be done via stool tests looking for fat malabsorption, as well as tests for lactose and other carbohydrate intolerance.  

Blood tests can be considered to look for celiac disease as well.

Regarding surgery, I would agree with the comments below suggesting that other avenues be explored before removing the gallbladder.  

These options can be discussed with your personal physician, or in conjunction with another GI opinion.

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.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[surgeon]

taking out his gallbladder at this point would be questionable: a low ejection fraction on HIDA scan can correlate to gallbladder disease, but it also can result from many other things, including whatever it is that might be causing his problem. HIDA scan is useful in diagnosing gallbladder problems mainly in the circumstance where someone has pain suggestive of gallbladder origin, but who has no gallstones. In that case, if the HIDA shows low ejection fraction AND the CCK injection reproduces the symptoms, it's reasonably likely that removing the gallbladder will help. In the case of your son -- speaking as a surgeon who's removed lots of gallbladders -- I'd agree with the surgeon you saw: it's not very likely to help. In fact, since diarrhea is the one side effect of gallbladder removal that can happen to people with some frequency, it seems something that should be done only with pretty solid evidence. Hopefully Dr. Pho can help with other possibilities; as to the question of surgery, I'd be reluctant at this point