Worried about NASH / anxiety

[JPKC]

Hi everyone,

Little bit about me - 34 yo, celiac disease, SIBO, 26 BMI (athletic build, work out 4x a week), had an abnormal LFT back in 2021 (95 ALT), so my primary care doc sent me to get an ultrasound. This showed "moderate fatty liver" based on echogenicity.

I was referred to hepatologist, they suspected this was drug-induced due to some treatments for SIBO and a trial run of Creon (basically medication interactions). LFTs stabilized after removing the medications.

Repeat ultrasound 6 months later showed normal liver. Hepatologist ran a ton of blood tests, all were normal, with the only thing that seemed 'off' was my transferrin saturation being a couple points above the max. Hepatologist was unconcerned.

Fast forward to 2023, I had gained some weight, about 6 lbs to be exact, and I started getting RUQ cramps (dull, lasts like 10 sec, then passes, happens throughout the day). I also noticed redness on my palms and of course freaked out thinking about palmar erythema.

Made an appointment w/ doc - sent me for an ultrasound and re-ran bloods. Ferritin had doubled in 6 months (108 -> 200), and liver size increased from 14.3 -> 14.8 on the ultrasound, but otherwise normal. He insisted liver has no pain receptors and unless I had a super large liver it wasn't my liver.

I pushed the hepatologist for a Fibroscan given the hands and RUQ, he agreed for peace of mind and it came back:

4.4 kPA, 183 cap

Very normal, but the vague symptoms persisted. Hepatologist explained all of the small variations on tests quite well, and spent a lot of time walking me through everything. Sent me to derm re; the hands.

Dermatologist thought it to be some weird dermatitis or a benign palmar erythema.

I continue to have the RUQ aches, stool colors that range from a yellowish brown, to orange-ish brown to light brown (sometimes they float) and palms continue to be the way they are. Doctors insist I'm fine and are convinced I'm fit as a fiddle.

I have another hepatologist appointment a month from now.

Basically, I've got a ton of anxiety around this entire topic. I know GI stuff can cause the range of stool issues, but wanted to talk it out with some people who have been down this road!

Thank you all for any advice you might offer. I appreciate you.

[nash2 Partner]

Well, you are a challenge for sure. None of your tests would lead us to think NAFLD/NASH which is what most of us deal with. Many of us would trade an arm for FibroScan results like that. No test is perfect, of course, and that doesn't mean something isn't wrong but it is likely to be some kind of more localized issue if it is liver related. The docs explanation of nerves is correct. The liver itself has no nerves and can't feel pain but it is covered by a tough membrane called Glissom's capsule that has plenty of nerves and is the usual source of liver pain. Your bloods are something docs will watch but so far well below where they get concerned. Keeping track of the trends is important as that can point to a cause before it reaches a critical state. Iron can be a problem so good to watch that. I have to get a phlebotomy myself from time to time to keep iron under control. We believe there is something genetic in my family that has us at risk. Anyway, it doesn't seem like you are in short term danger so try to take a breath. Anxiety is a disease too.

Wayne

[JPKC in reply to nash2]

Thanks for coming to my Ted talk / rant Wayne! I appreciate the insight.

Re: iron, did they ever test you for hemochromatosis? Fairly common in people of European descent, especially if your issue is genetic / hereditary.

[nash2 Partner in reply to JPKC]

They did, I don't have that, we assume something genetic because of the several family members who have had issues

[Alterity]

Stop stressing. Stress can cause so many problems for your body. Enjoy life, live every day as if tomorrow will not come. It doesn't matter if you have a disease or not, you can get in your car and die 5 minutes from now, so stop stressing believe everything is fine and just get up and go. positive attitude can change everything.

[Fibro2021]

Hi JPKC. Celiac disease and SIBO can cause secondary liver damage in the form of nodular regenerative hyperplasia of the liver with the formation of non-cirrhotic portal hypertension in the future. Perhaps your doctors should consider this version as well. Although, my experience suggests that doctors are in no hurry to think about such options.

[JPKC in reply to Fibro2021]

I’ll bring it up, though they were not terribly worried given celiac is fully under control (deep enteroscopy + capsule both good and biopsies normal through jejunum) and the SIBO was treated with antibiotics though it did return after a long while (5+ months).

Any info I can share with them? I see Stanford and they’re pretty open minded about micro biome stuff!