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Sunday, March 11, 2018

Running With Gilbert’s Syndrome

I slacked off on my blogging last year because I hadn’t been running much and didn’t feel there was anything worth writing about. I haven’t done a race since last June, but am getting back on track now that I’m healthier. I’ve been training for a few spring races and am looking forward to the Bataan Memorial Death March (26.2 miler) later this month and the Jemez Mountain 50 Miler in Northern New Mexico in May.

Bataan Death March 2017
Last year was a rough year for me health wise. I began feeling bad last spring and decided to back off on my running in the summer to determine what was going on. I was having a lot of fatigue, dizziness, irritability, insomnia, chills, asthma and brain fog. At the time I thought I was having food sensitivities, but my doctor thought it was acid reflux. Doesn’t every male over 50 have acid reflux? Anyway, he put me on some acid reflux meds and things went downhill from there. By October I became very sick with a low grade fever, chills and high counts of liver enzymes, bilirubin and ammonia. 


Jemez 2017, I barely made the last cut-off time 
After an ultrasound, CT scan, MRCP (a type of MRI) and 50 blood tests, a liver specialist determined that I had suffered a drug induced liver injury. Fortunately the liver is an amazing resilient organ and, unless you bombard it with alcohol, can regenerate and heal itself. In addition, the specialist determined that I have Gilbert’s Syndrome which makes my body more susceptible to adverse drug reactions and less tolerant of toxins. I became allergic to aspirin and other NSAIDs (ibuprofen) when I was around 35 years old so only take acetaminophen for fevers and pain. Of course this is also bad for the liver.

Tibetan Prayer flags on N. Franklin Peak
Gilbert’s is a genetic condition where people are born with less of an enzyme that converts bilirubin to bile. (Bilirubin is a waste product from dead red blood cells.) My bilirubin count is always about twice a normal person’s. Most people don’t know they have the condition and the main symptom is jaundice when they are sick. Unfortunately though, some of us experience many other symptoms including those I mentioned earlier. 

I’ve always suffered hypoglycemic reactions (low blood sugar) to some foods and noticed that I was becoming more sensitive to sports drinks, gels and other sugary foods during races and training. Another problem I've experienced over the years is chills and night sweats following long races. I never knew why, but now believe it's because high levels of ammonia build up in our bodies when we run long and the liver and kidneys are supposed to convert it to urea where it's then excreted through our urine. However, a secondary way to rid ammonia if the organs can't keep up is through sweating. Of course ultra-marathoning puts great strain on the body including the liver so people with Gilbert's Syndrome are supposed to avoid fasting and strenuous exercise as well as get lots of regular sleep. That recommendation doesn’t sound conducive to ultra running does it? Well, I’m going to try anyway!

**Intermission**

Medical stuff can be very boring so here are some bird pictures to make this post more enjoyable. (I like to bird watch when I can’t run.)

Thrasher taking a drink
Lesser Goldfinch
Scaled Quail
Northern Shoveler pair
Do you feel calmer now?

Per my doctor’s recommendation, I’ve been on a no grain, no dairy and low sugar diet that you could call quasi paleo. I now totally stay away from processed foods and watch closely what meds I take. I’ve had to rethink my race and training nutrition strategy and have been experimenting with running foods. Gels and sport drinks are out as well as crackers, bread, cookies, etc. I’ve substituted potatoes for grains and have been running with boiled salted potatoes, potato chips (coconut or avocado oil), dried fruit, fresh fruit and almond stuffed dates. My protein comes from hard boiled eggs and a little chicken or turkey.

Franklin Mountains, El Paso, TX
My training is going well and I’ve regularly been going up to the N. Franklin Peak (7192’) including a double ascent. I also ran 26 miles around the Franklin Mountains which is an epic loop that is part of the Franklin Mountain 50K and Lone Star 100 courses. I have several water caches placed strategically along the route that enable me to stay hydrated when I do this run several times a year. I tried out my foods on my run and was able to keep my energy up for most of it. I started to bonk toward the end while climbing up to Mundy’s gap (6000’), but ate some dried apricots and a few dates which carried me the rest of the way home.

The view from N. Franklin Peak
Someone had a lot of time on their hands
Overall, I feel much better now. I was able to bounce back quickly because I was in good shape having run a lot of ultras in the past. I also attribute my success to the low sugar and lower carb diet that I’ve been eating. My wife, Cara has been eating this way for several years and has been a godsend. She cooks wonderful meals for us and has taught me what foods to avoid and what to eat. Our world is full of horrible food choices and we are over medicated so it’s no wonder I had a liver meltdown. Toxins, preservatives and chemicals are in everything so it’s hard to avoid them, but with effort it is possible to eat clean for your health. 


I haven’t planned a very demanding race schedule this year until I see how things go at Bataan and the Jemez 50. These races will be the true test to see if I can continue running ultras. Time will tell if I have any more hundred milers left in me. Regardless, I will keep running in some capacity as long as I can. 

See you on the trail.

25 comments:

  1. I am glad I found your post! I found out yesterday that I have Gilbert's syndrome and I love running in south Texas too! I am French but we moved to Houston a couple of years ago so I get a chance to run in your beautiful country! Keep doing what you do, it is great and an excellent motivation for people like me :)
    Aude

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    1. Thank you for reading. Check out Trail Racing Over Texas if you haven't already. See you on the trail.

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    2. Bonjour Aude !

      I hope you keep up in running and fitness ! It’s great to know there are more gilberts sufferers who love sport and athletics

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  2. I also have gilberts.Have had it for 3 years now. Because of it I lost my greatest passion riding dirtbikes. I trail ride dirtbikes alot . Very energy demanding terrian i ride .But the good news is I have been on this carnivore diet for 5 months and its has helped me ALOT energy wise and mentally enough no where I can ride again but I still dont feel 100 percent. but dramitacally better . people like us need to communicate and keep trying things out . thanks for sharing your story

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  3. My son, age 16, has just been diagnosed with Gilbert's. He is a runner and pushes hard when running. He wants to be an elite athlete however he has had several instance lately where he says he feels like he gets punched in the side mid way through a 5k. Has anyone experienced this and if so, what do we do? Thanks for your help. Chris

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    1. Oh my gosh - I hope you see this. I'm up in the middle of the night trying to figure out why my 17 year old son gets a 'side-ache' about 1 to 1.5 miles into running race pace. Never any other time except racing. We have been trying to figure out what is going on for about 2 years now. He has Gilbert's.

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    2. Also, the severe pain goes away within 30 mins of stopping. He can run 6:30 pace for 10 mile with nothing happening and then drop below 5:00 for more than a mile and boom - it hits. Trains 55-60 miles/week.

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    3. Hi Michele, I'm going to show your post to my son's doctor, it might be the answer we've been searching for. I also have a seventeen-year-old son, Carter, that is a distance Runner. What you have described sounds exactly like what has been happening to Carter. He has been seeing a GI specialist and so far all tests have been negative. I came upon your post this morning because I was reading articles about Gilbert's syndrome. Carter's twin brother, Connor, was diagnosed with Gilbert's syndrome last year and had an episode of dizziness this morning. Connor experiences rare intermittent episodes of dizziness/fainting which we attribute to the Gilbert's syndrome. Carter has not been diagnosed with Gilbert's syndrome but looking back at past blood work Carter has had done his bilirubin was elevated. Carter most likely has Gilbert's also. I did not think this would be the cause of Carter's stomach pain during races until I read your post.

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    4. It has definitely been frustrating to try to figure out. We have been to various doctors and PTs trying to determine the cause. I'm curious does Carter's pain appear to be threshold oriented - meaning his pace has to be below a certain threshold for the side pain to occur? The other thing I found - that I couldn't get the doctor to investigate more fully but might press this time around - is exercise-induced MALS. I'll provide a link to a folder with some articles below. It at least has some medical substantiation which I can't seem to find with Gilbert's. I'd love to hear back if find out anything further. This has been quite frustrating.
      https://drive.google.com/drive/folders/13wXMqyC6901FCN-AjDChMpfMMU9bkLH4?usp=sharing

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    5. Sorry I didn't reply sooner. Just getting back on this site this evening. Carter usually doesn't have a problem with a slower pace. But if he goes below a 7 to 8 minute pace the pain starts (sometimes with nausea/vomiting). During races he is usually fine for the first mile (even at a fast pace). But after the first mile his abdominal pain starts. I was amazed that your son's symptoms were so similar to Carter's. Carter has tried a couple of prescription medications (reglan and zofran) that provided only a slight improvement in his symptoms. But now he has been taking another prescription medication called Granisetron. This medication is usually only used for kids undergoing chemotherapy. So I'm not thrilled about him taking it but with this med he can now run two miles before the pain starts. He only takes it for races and not for training. He is still a puzzle to his doctor. He is seeing a cardiologist next month. No cardiac symptoms, just to be on the safe side/cover all the bases. I hope you're having some luck finding an answer. I'm going to read the articles on MALS.

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    6. I'm curious if anything came from the cardiologist? We are going to one on Thursday. Also seeing a pulmonologist in July. So not much further in answers but still looking down several rabbit holes. Let me know if you want to email at some point - versuses exchanging comments.

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  4. Hey i am suffering from gilbert syndrome and i found it 7 years back and i love running but that increase fatigue and eyes pain and stomach pain and heavy head... What should i do if i want to continue running.. I really appreciate your post and i found that there is some silver lining and still i can run like you... Help me..

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  5. Hi Greg
    Are you still running, found anything else that helps, supplements etc ?

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    1. Yes, I'm running regularly. Get your vitamin D checked and make sure to get a bit of sun, especially in the winter, because that's what makes D. Fortunately I live in a sunny warm place. I go outside in the middle of the day during the winter to sun myself. I think it may help.

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  7. Hi there! I came to know about Gilbert Syndrome last month when my night chills didn't stop and I was always fatigued. It would be really helpful if I found more articles like this. Would appreciate if anyone posts or write more about it especially those who want to run marathons. Thanks

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  8. This blog was very informative. I have Gilbert’s syndrome and have been a 6-10 km trail runner for several years. Recently I ran a beautiful route along the mountains in Cape Town South Africa, 6 hrs- 40 km. Bitten by the bug of long distance running, I plan to run a few ultras- maybe even 100 miler if I am able. At age 37 now, I feel this is possible with the correct training. I have not experienced any of the detrimental symptoms of Gilbert’s syndrome although I did have chills and sweats the night after the 40 km run. Perfectly fine the next day though. I’ll keep checking out your blog.... thanks Greg. Cape Town aspiring ultra runner- Allan

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    1. Thanks for reading. I frequently have chills and night sweats after running ultras. Good luck in all your endeavors.

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  9. So November last year I started suffering with discomfort in my right side that seemed to last for 3 to 4 weeks, doctor did some blood tests and sent me for an ultrasound. By the time I got the results the pain had gone away. They results showed a small polyp in my gall bladder and also that I had gilbert's syndrome. I was told not to worry about gilbert's syndrome as it should have no effect on me. But the pain has come and gone since then and I started to keep a diary of my symptoms and worrying about all sorts of possibilities as to the cause. The one thing that my symptom diary has show is that when I do any running or swimming the following days I have discomfort in my right side and severe fatigue which appear to be classic Gilbert syndrome flare ups. This is both a blessing and a curse. I have an answer which is great, but I'm trying to work out how I can continue running without feeling so fatigued for days afterwards . I'd also being doing intermittent fasting which is also a big no no. Anyway thank you for your blog, it gives me hope that if I control what I eat I might not have to give up on my 5 & 10km runs

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  10. I was really happy to see your blog and post about Gilbert's Syndrome and running. It's quite surprising you have noticed the syndrome so late in your life. But it is also great news that you continue to run. :) It is really meaningful to me as I am currently struggling a little bit what to do with my own exercise schedule. I've been diagnosed around 10 years ago, but after a longer and bigger period of using NSAIDs (3-4 days of 3 times a day 200 mg) I saw elevated ALT ASP levels. It came back to normal after less than a month, no fibrosis fortunately, but that made me think if I can still do my short 30-minute jogging routines. You gave me hope and calmed me down a little bit. :)

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    1. Glad to hear you are on the mend. Keep that positive attitude! Thanks for reading.

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    2. Probably you already know, but: "While paracetamol (acetaminophen) is not metabolized by UGT1A1,[17] it is metabolized by one of the other enzymes also deficient in some people with GS.[18][19] A subset of people with GS may have an increased risk of paracetamol toxicity.[19][20]"

      To be honest... it's hard to be sick with Gilbert's Syndrome. :P

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  12. Hello. Even though I have Gilbert syndrome, I want to keep running. The day after a run, I experience a pretty strong “fitness hangover”.

    Antihistamines help me calm down and deal with skin flare-ups (desloratadine is my favourite). I also recently started taking famotidine. It helps a lot with stomach problems. I use this not only after the run, but on a regular basis. Also, allergy sufferers only need 5 mg of desloratadine a day and they feel fine. Me: 20 mg per day: 5 mg in the morning, 5 mg at noon, 5 mg in the evening, 5 mg at bedtime. Fortunately, Famotidine is sufficient, as the instructions say 40 mg at bedtime.

    My life was made easier by those antihistamines.

    Ursodeoxycholic acid is also a “must-have”.

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