Walking the Camino with Gilbert syndrome 👨‍⚕️

dadaperegrino

Member

Time of past OR future Camino

2023 - Camino Francés

• Oct 14, 2023

• #1

Hello everyone,

I’ve recently been diagnosed with Gilbert’s syndrome, a benign genetic condition where the liver processes bilirubin more slowly than usual. This results in a buildup of bilirubin in the blood, leading to symptoms like fatigue and tiredness.

I’ve completed five Caminos in the past, with the most recent being the Camino Francés this past May.
I began noticing these symptoms only in September, which understandably affected my preparation for the upcoming Camino Inglés I had planned for November this year.

I’ll be consulting my doctor, but I wanted to reach out and see if anyone here has experience or insights related to this condition and long walks. Perhaps there’s even a “walking doctor” familiar with the physical demands of the Camino?

Should I postpone my next Camino? Will I be able to undertake Caminos in the future? What precautions might be advisable?

I genuinely appreciate any advice or shared experiences. Thank you!

If you never heard about Gilbert you can read more here:

 

naplesdon

Veteran Member

Time of past OR future Camino

Multiple Caminos 2010 to 2019

• Oct 14, 2023

• #2

Not to sound dismissive about your concern but I was diagnosed with Gilbert's ages ago. There is no treatment but I don't believe it is life threatening. I have done 13 years of Camino living with a diagnosis of hemochromatosis which is a deadly blood disorder only treated with periodic phlebotomies to reduce the iron level in my blood system. None of my doctors were ever able to connect the two blood disorder to each other but both of them are heredity as I understand.

 

backlasher

Member

Donating Member

Time of past OR future Camino

Thinking about next year

• Oct 14, 2023

• #3

I have Congestive Heart Failure which has some of the same symptoms as you described. I plan to walk the 100 kms from Vigo to Santiago de Compostela and I plan to walk shorter stages and slower but I can't imagine that fatigue and tiredness will cause me to not walk the Camino. I'd talk with your Doctor and make any adjustments you need to make but plan and work to walk it.

 

basquelady

Active Member

Time of past OR future Camino

CF (2013), CF Pamplona to V del Bierzo (2014), Baztanés, then CF (2016), CF Sahagun to SDC (2017)

• Oct 14, 2023

• #4

Gilbert's syndrome

Read about Gilbert's syndrome, a genetic hereditary disorder where slightly higher than normal levels of bilirubin build up in the blood, causing jaundice.

www.nhs.uk

This looks like good straightforward advice

 

howardd5

Active Member

• Oct 14, 2023

• #5

dadaperegrino said:

Hello everyone,

I’ve recently been diagnosed with Gilbert’s syndrome, a benign genetic condition where the liver processes bilirubin more slowly than usual. This results in a buildup of bilirubin in the blood, leading to symptoms like fatigue and tiredness.

I’ve completed five Caminos in the past, with the most recent being the Camino Francés this past May.
I began noticing these symptoms only in September, which understandably affected my preparation for the upcoming Camino Inglés I had planned for November this year.

I’ll be consulting my doctor, but I wanted to reach out and see if anyone here has experience or insights related to this condition and long walks. Perhaps there’s even a “walking doctor” familiar with the physical demands of the Camino?

Should I postpone my next Camino? Will I be able to undertake Caminos in the future? What precautions might be advisable?

I genuinely appreciate any advice or shared experiences. Thank you!

If you never heard about Gilbert you can read more here: View attachment 158335

Click to expand...

I have the Gilbert’s syndrome and the only drawback is you don’t have enough digestive enzymes to handle fats in your stomach which can ( not often) give you diarrhea when you eat too much straight fat and sometimes a yellow ting to the whites of your eyes. The valve that allows fat digestive enzyme from your gall bladder leaks giving a little in your stomach all the time , not just when you eat fat. So when you eat alot of chorizo or jamon you are unable to get enough enzyme to break it down( sometimes you fart) . I have been on a dozen Caminos and no worries, so now easy on the vino , spirits you just easy on fats. You can now be more likely to have a gall bladder attack . But go the distance and enjoy the ride.

 

hokiebobwise

July '23 (CF/Astorga)

Time of past OR future Camino

CF/Astorga July 2023

• Oct 15, 2023

• #6

I too have been told I have Gilbert. For me, my bilirubin and chloresterol work in opposite. Thus, I came back from my camino and my bilirubin was under 1, hasn't been that low in 15 years. My chloresterol, however, was 236. The highest in my 48 years. If possible, choose to eat more veggies. The sun is helpful, at least for me, and helped keep my energy levels up and I stayed away, for the most part, from the sweets.

Bob

 

dadaperegrino

Member

Time of past OR future Camino

2023 - Camino Francés

• Oct 15, 2023

• #7

Thank you all for your advice and for sharing your experiences! Now I feel less scared about going on my next Camino.
I will take it easy, don’t push myself and enjoy the walk