r/GilbertSyndrome

for those who take phenobarbital for Gilbert’s, what dose actually works for you?

I'm mostly interested in symptoms like fatigue, headaches, brain fog, digestive issues etc. not just lowering bilirubin or getting rid of yellow eyes

what dose do you take and how often? how long does it usually take before you notice a difference? and do you get side effects like sleepiness or dizziness?

I have 100mg tablets, so just trying to understand what the lowest effective dose people actually use is

I'm just curious if most people experience tiredness like I do after I've been up for a few hours.

I can hardly hold my eyes open after usually 3-5 hours of waking.

Hello. Is anyone here with Gilberts and gastritis?

I have found, that I have Gilberts only this year afer a gastritis flare up.

Now a lot of things came together - yesterday I have not sleep a bit because neighbours decided to have a huge party. Also I once again have gastritis flare up, GERD flare up.

And my eyes turned yellow AF.

So my question is that normal? Is that asociated with gastritis, GERD?

How long till my eyes whiten up?

Hi everyone,

I’m a 24-year-old female (5'5" / 166 cm, 119 lbs / 54 kg) looking for clinical perspectives or guidance on what diagnostic steps to take next for a long-standing, highly complex health situation.

I am a cigarette smoker, and my only current medication is Clonazepam (Rivotril) at 0.5 mg (a quarter of a 2mg tablet) taken at night.

Context on Medical History & Dismissal:

Ten years ago, when these GI symptoms first started, local physicians couldn't find a cause and simply slapped me with an IBS diagnosis, sending me to psychiatry where they claimed I had depression despite me being completely mentally healthy at that time. They didn't even prescribe any medication then. Because my physical issues went unaddressed for a decade, the chronic suffering eventually led to genuine, more severe psychological distress in recent times.

Currently, I have formal codes for recurrent depressive disorder, severe episode (F33.2), and emotionally unstable personality disorder - borderline type (F60.3) in my record. Unfortunately, because these codes exist, doctors continuously dismiss my physical symptoms as "purely psychosomatic."

To make matters worse, I have a family history of Gilbert's Syndrome. When I brought this up to a hepatologist, he dismissed me out of hand, asking only "Do you turn yellow when you don't eat?" and when I said no, he claimed "Only men get Gilbert's anyway," completely brushing off my concerns.

Gastrointestinal Symptoms & Severe Maldigestion (10+ Years):

Diarrhea & Gas: Chronic diarrhea ~80% of time. I suffer from extreme, severe intestinal gas and bloating - literally feels like constant explosions and intense rumbling/twisting in my intestines triggered by almost any food.

Maldigestion: A stool microscopy (coprogram) explicitly confirmed the presence of undigested fats, muscle fibers, and starches.

Appetite: Over the last 5 to 6 years, my appetite has dropped to almost zero. I eat very little, yet the diarrhea, severe gas, and maldigestion persist unchanged.

Upper GI: A gastroscopy confirmed a hiatal hernia, and I frequently feel a sharp, pinching or tugging sensation in my upper stomach area.

Severe & Paradoxical Drug/Supplement Sensitivity: What makes my case particularly difficult is an extreme sensitivity to roughly 90% of oral medications and supplements:
Standard GI medications like PPIs (pantoprazole, esomeprazole), antispasmodics (mebeverine), digestive probiotics, and simethicone don't help at all. Instead, they induce severe nausea, intense headaches, or exacerbate GI distress.

Trials of various psychotropic drugs led to severe paradoxical reactions - so much so that my treating psychiatrist advised stopping all psychotropic trials altogether until the underlying physical and metabolic causes are investigated.

Even basic over-the-counter supplements like Magnesium Bisglycinate cause paradoxical agitation and distress, including really painfull leg cramping.

Interestingly, the only medications I tolerate without adverse side effects are certain benzodiazepines (clonazepam, alprazolam) and a specific NSAID combination (ketoprofen).

Current Diagnostic Workup:

My standard blood panels (CBC, liver enzymes, pancreatic enzymes, and total bilirubin) are all completely normal. I recently had a duodenal biopsy during my gastroscopy and am currently awaiting the histopathology results to evaluate mucosal integrity and mast cell involvement. Moving forward, I am planning to test for Fecal Pancreatic Elastase-1, Zonulin, Secretory IgA (sIgA), and potentially get a SIBO breath test.

Questions:

Could an impaired intestinal barrier (Leaky Gut) or GI mucosal Mast Cell Activation (MCAS / mastocytic enteritis) explain such immediate paradoxical reactions to simple oral compounds and supplements?

Given normal routine bloodwork alongside severe maldigestion, extreme gas, and drug hyper-reactivity, what specific metabolic, neuro-gastroenterological, or immunological conditions should be ruled out?

What sub-specialist or specialized diagnostic panel would be most appropriate to consult for this picture?

Thank you so much for your time and insights.

So I'm starting isotretinoin for some recurring pimples. I informed my dermatologist that I have gilbert's to check if it's proper for me and after he searched about it he told me it's actually beneficial for me because it's shown to reduce biliburin. I'm curious, has anyone had that? And how much was that decrease? If course I guess the effects will stop when I stop the acne treatment

I’m 55 and have been on hormone replacement therapy for over a year. My rheumatologist ordered a genetic blood test to confirm I have Gilbert Syndrome. I just came across something about Gilbert Syndrome processing estrogen differently. I had never read that before. Is it safe to take HRT (0.5 mg estrogen patch and 200 mg progesterone)? My gynecologist knows I have Gilbert but never mentioned it could be a conflict!

Serum conjugated bilirubin level 11 umol/L [< 6.0]; Above high reference limit
Serum total bilirubin level 36 umol/L [0.0 - 20.0]; Above high reference limit
Serum unconjugated bilirubin level 25 umol/L [0.0 - 15.0]; Not calculated; Above high reference limit

Hello, this is me again, the guy that is desperate about reducing his bilirubin

So i took for 5 weeks straight CDG And Sulforaphan everyday (The CDG 500mg in morning, 500mg evening)

I did absolutely Not expect my bilirubin to drop from 2.6 to 1.4. Especially because i have thalasemia-minor, where you have also a lil more bilirubin than just gilberts syndrom.

I'm still yellow. I still got yellow eyes and skin, guess I'll just need more time, but i've never expected my bilirubin to almost get as half as i had.