Advice - am I barking up the wrong tree

Hello,   I have always been diagnosed as having IBS. However, recently my intestine perforated (likely diverticulitis) and I have had lots of resultant tests as I was not longer prepared to accept IBS as a diagnosis. The specialist's working theories are / have been celiacs, crohns, recurrent pancreatitis but I do not fit nicely into the box and I am worried it may be liver related (although I have always been told it is not). Symptoms are:   - M alabsorption for a long period of time, stools recently got much paler  - I have right sided pain from bottom of ribs all the way to my hip bone - on an off  - I somtimes have tenderness under my right rib cage - Eating lots of food and heavy exercise help me - I get burning eyes when I eat certain foods - I have burst cappilliaries on the left side of my chest below my nipple - Endoscopy was normal but had increased intrapitheal lymphocytes (common in celiacs but also in chronic disease) - I need more sleep than others   All my blood tests have been normal (all perfectly in the middle of target range for all liver enzymes and IgA, electrolytes, creatine, blood counts) except: - Total bilirubin (conjugated + unconjugated) which has fluctuated from 0.6 - 1.5 (or 13 to 29).  Conjugated bilirubin has never been above 0.6 (13).  - My TSH is at 8 - When my pain was worst my granulocyten (type of white blood cell) went outside normal limits - Blood test negative for celiacs   CAT, MRI and ultrasound scans are all also normal for gallbladder, pancrease and liver, so I have been advised Gilberts syndrome. However, my pancreas is not making enough digestive enzymes, they are sometimes good and sometimes bad. However, I do not get pain when I eat - if anything eating reduces pain, which does not suggest pancreatitis. The doctor is not clear if my pancreas is damaged (but all scans are normal) or if it is not getting the right signals (crohns or celiacs).    The reaon I am worried is I understand liver problems can cause pancreatic insufficiency. I also drunk too much at university 20 years ago now (50 units spread over 2 - 3 days for ~ 2 years). I didn't drink any alcohol before university and minimal amounts since as I do not feel good the next day after small amounts (I would not feel good after half a glass of beer). I have two questions (and any other observations gratefully received!!):   - Can you have negative scans and bloodwork but still have a liver problem? - Is it possible that I have got hepatitis at university 20 years ago and it has remained at a very low level ever since, but only flared up recently again (I had very heavy antibiotics and paracetemol and no food for a week when my intestine perforated)     Thanks for any advice - sorry for the long post

Hello, Andrew:

Welcome to the forum, though I don't think we can do much to help you here with your current labs.

I had one thought, however, from your own post:

(I had very heavy antibiotics and paracetemol and no food for a week when my intestine perforated)

Here in the US they are advertising that the drug in paracetemol can cause acute liver failure at surprisingly low doses. People don't realize that med is included in many other preparations and may take a pain med that is half oxy and half Tylenol, and the like. Some cold medications like Sinus tablets or cough medicine can have it also. You have to read the labels and not exceed the recommended daily dosage adding the ml together!

Alcohol and paracetemol together can cause death in not that heavy dose.

I'm sorry about your pain and wonder if you have tried a diet that is celiac friendly just to be sure you don't have a mild case and then the flare ups?

Have they tried you on prednisone for a while to see if you have some relief?

Good luck,

Mama Lama

Have you told your doctor about this?

Thank you for the replies - when on the paracetamol (IV) I was in hospital and being monitored and liver enzymes were also normal 3 weeks after my hospital stay which is when things (what ever they are) really started to flare up for me.

One last question - the other odd thing that happens is I have white urine every now and again - it is not an infection - latest thinking is it is lymph fluid due to a blockage in my lymph system

Has you ever heard of this associated with liver issues - again it first happened to me at university when I was drinking too much but may be conincidence.

Thanks again for the replies

Thanks Danny - I am currently doing a gluten challenge - 40g per day followed by an endoscopy / biopsies in 6 weeks so should (I hope) get a definitive ruling on Celiac. Sedimentation and CRP are normal - I do have some banding in my colon and a little blood, but they think that is scarring from diverticulitis and not from Crohns, but I have had lots of pain in that area since I was 20 so it is very young to get diverticulitis.

Stop drinking any alcohol. Get to a hepatologist for testing. Then you will have a better idea of what's going on.

Andrew,

It sounds more like an inflammatory bowel issue.  Since you've always had IBS, if you're not willing to accept that, see a GI doc about doing a work-up for Crohn's or ulcerative colitis.  You could also ask to have your gallbladder examined further.

The roast may have just caused excess gas.  I'm sure that's where a lot of my RUQ pain comes from since everything has always checked out normal. 

All your liver values are normal (except very slight increase in bili which could be Gilbert's phenomenon - a benign issue)...I'd focus on gut for now.