So, I have an update for anyone interested. I last posted my first thread a few months ago, where I was wondering about copper-rich foods causing spleen pain (or left upper quadrant pain). And since then, there have been some developments that seem to be more and more indicative of Wilson's Disease.

Subsequent to the LUQ pain which began to be a significant problem in November last year, I started to develop significant discomfort in the RUQ. At first this felt like a swelling sensation that accompanied the LUQ pain and worsened with consumption of more copper in my diet (since mid July 2025 I have been weighing and tracking all of my food in Cronometer, which allows you to estimate copper intake with USDA, NCCDB, CNF (Canadian agriculture data) and other similar databases that include micronutrient counts for thousands of common foods).

After this LUQ pain, which was particularly intense at night, after days of higher copper intake (e.g., 1.5 mg as opposed to 0.6 mg), I decided I needed to get fast medical intervention to see what was going on. Previously to this, I had been seeing a new GP about my suspicion of Wilson's disease but he really did not take me seriously and seemed to think that my pain wasn't that significant and that my neurological symptoms were very mild, and he ignored my observations about consumption of copper foods being correlated with my symptoms (he was a new GP to me because I hadn't had one for a little while after being outside Canada for a few years recently).

So, since my GP was ignoring me and my symptoms were worsening (I was also having regular mild chest pain at this point), I decided I needed to go to the ER. I live in Toronto, Canada and I went to one of the major hospitals in the city. The emergency department physician focused on the “post-prandial” aspect of my abdominal pain (even though I explained that it was particularly noticeable only after eating high-copper foods) and referred me to their GI clinic for evaluation via endoscopy. That took a few weeks to get to, and a little longer after that to confirm that everything including biopsies were all negative.

Eventually, in late December, the RUQ swelling became RUQ pain, still intermittent at first, and moderate (about a 4-6/10). Since then, in late January, the RUQ pain became much more problematic and in the last few weeks has started to be accompanied by lower-region abdominal swelling, discomfort and occasional, intermittent mild-to-moderate pains. I suspect that I am developing mild ascites, particularly in the lower left abdominal area. My navel is slightly displaced to the right by about a half-inch to an inch. The swelling is not yet particularly severe and has not progressed as far as I can tell, but I am quite concerned about it. I went into the emergency department again last week to have this evaluated, and nothing could be seen on ultrasound but I am still unsure whether I might need to go into the ER again. The ultrasound did show mild fatty deposits on the liver and mild liver swelling.. But it seems incommensurate with the amount of pain that I have experienced so far, and with the lower abdominal pain. I am finding it difficult (painful) to do any heavy lifting or anything that requires a lot of core muscle activation, so I am doing my best to minimize or avoid these kinds of activities.

I would appreciate any advice on what to do about the potential ascites in particular.. Both if I should go to the ER again about this and if there is anything I can do in terms of diet to slow down the progression.

As for the fatty liver, I have been dieting. Not really by choice, but rather because it is difficult to eat enough, both due to the lack of appetite I've been experiencing, and because it is hard to eat enough without eating too much copper and worsening the abdominal pain and other symptoms (insomnia, very mild hand tremor, teeth grinding at night, paresthesia, others). I have been eating at about an 800-1000 calorie deficit and have lost about 15 lbs in the last 6 weeks or so.. Which should help the fatty liver deposits, but I don’t have much more fat to lose (perhaps 15-20 lbs before I start to be emaciated and burn a lot of muscle) as I was pretty lean to begin with, and have always followed a healthy diet for many years (including limiting sugary foods and avoiding HFCS foods almost entirely), and I don’t like drinking alcohol and have had about 5 drinks in the last decade.

After going into the emergency department this second time, the doctor I saw for the endoscopy referred me on to a liver specialist clinic here. I explained my symptoms in a lot of depth to the GI doctor, and my suspicion that they are caused by copper toxicity/Wilson’s Disease, and requested referral to the liver clinic here (which is attached to a different hospital than the one I have gone to so far). Lucky for me, he granted this request. I still don’t have word yet that they will take me as a patient but I am hopeful that they will.. I am wondering if anyone has any advice as to how to prepare for the first appointment. I realize that I should compile a list of all of the supplements I have been taking including frequency and dosage, and that I should try to put together a history of my symptoms as well as a family medical history. Is there anything further that I should do to prepare?

Thanks very much for any advice!

Edit - forgot to mention that I am in my late 30s and am male.

Edit 2 - edited for clarity/flow and added a few details about my experience with my GP.

Wilson Disease

About This Community

Inspire community guidelines

About this community