Ketone Diarrhea a Follow Up

[SarahB]

A brief recap - I attempted an animal based ketogenic diet, primarily to treat migraines but figured the ketones might help combat my APOE4 status. Shortly into my diet, I developed diarrhea which persisted despite several interventions (fiber, ox bile, digestive enzymes). I've just completed a massive workup (single payer country, thank goodness) and wanted to share some information in case anybody else ever has this issue. (This information is extracted from PubMed and is evidence based.)

1 - The most serious causes of diarrhea on a ketone diet relate to the pancreas. Without enough pancreatic enzymes in the small intestine, fat is not adequately digested and shoots through the intestine. Causes include:
Blockage of the pancreatic duct by tumor or inflammation
Pancreatitis - autoimmune or alcoholic or idiopathic
Of note, a triglyceride spike due to a ketogeneic diet can destroy a pancreas - Rare death's have been reported, both in the adult and pediatric populations.

2 - Supplements, minerals and medications can cause diarrhea. PQQ, CoQA, NAC and on and on... If its a pill and you swallow it, it could be causing diarrhea. So starting a bunch of new supplements and starting a ketogenic diet at the same time is highly unwise.

3 - Bile problems - Bile is also critical for fat digestion. Both inadequate bile and too much bile can be problematic. People missing a gallbladder or with liver dysfunction may not secrete adequate bile to digest fat, and the undigested fat passes through like a freight train. Some folks can rectify bile underproduction by supplementing with ox bile. However, oversecretion of bile can also lead to diarrhea, a condition termed bile acid diarrhea(BAD). Usually, bile is secreted in the upper small intestine, then resorbed in the lower small intestine. Small amounts trickle into the colon but are neutralised by colonic flora and fauna. Some people secrete a crazy excess of bile or do not resorb bile adequately.

The bile malabsorbers may have a defect in SLC10A2 gene.

No definite mutation has been linked to bile overproduction, but several groups are actively researching the involved molecular pathways. People who overproduce bile tend to have very low cholesterol levels (low LDL with a good HDL ratio) because the liver is sucking down cholesterol and making bile like crazy. People who overproduce bile may have a history of sudden, violent diarrhea following fatty meals. Some of these people may have been diagnosed in the past with irritable bowel syndrome, diarrhea type. This type of diarrhea (BAD) is commonly overlooked by doctors. Many doctors are unaware of its existence. Diagnosis is difficult but several groups are working on simplifying diagnosis by developing new tests. BAD can trigger lymphocytic colitis, an inflammatory condition presumably because bile acids escaping into the colon result in inflammation.

So here's what happened to me. My cholesterol has always been in the gutter with no effort on my part. I've had sudden GI "attacks" all my life. A 70% fat diet quickly sent me into diarrhea, and no intervention (pancreatic enzymes, ox bile, stopping supplements) helped. Particularly bad days involved fatty meat and squid. After I stopped the ketogenic diet, the diarrhea continued. Turns out I'd developed lymphocytic and collagenous colitis. The medical workup included innumerable laboratory tests, an ultrasound, a CT scan, an enterocolonoscopy (all of which would've been whoop-ass expensive if I wasn't covered). So, the combination of bile hypersecretion, a high fat diet, and also probably starving off colonic microflora did me no favours.

And the bottom line is - if you develop chronic or periodic diarrhea on a ketogenic diet, check into it. (rant warning) The odds are high that your physician, even your gastroenterologist, will have no idea about any of these issues and you'll have to lead them by the nose. My observation is that the doctors are great at ordering the tests and scans and scopes, but are less interested in interpreting the overall situation, probably because they don't get paid for intellectual curiosity and analysis.

[Torimintz]

I had issues similar to this when on a strict keto diet. I would eat, easily 2000 calories a day and I still lost weight, yet had massive amounts of bm that was diarreaish. I wonder why and if other apoe 4/4 have this issue too.
I had fat in my middle, and I was pre diabetic, even though I wasn't very overweight. TOFI . thin outsdie fat inside.
I did lost 15 pounds on keto and fixed my insulin and blood sugar issue, but I could never get used to digesting so much fat. I am better all around when I have more complex carbs and fruit in my diet.

[SarahB]

I also lost quite a bit of weight on the ketone diet, but I don't recommend losing weight in such an unhealthy manner. I was obviously having electrolyte problems, given the muscle cramps, dehydration and, turns out, bowel inflammation. I had to make emergency pit stops on the way to work at my kid's high school. Also, my college weight at 55 looks terrible. My ribs show. I have no rear end, only bones. So over all, keto was a big minus for me.

I'm not entirely sure what to do, diet wise. People in my family get Alzheimers despite control of LDL, and I naturally have a low LDL/ high HDL, so why bother with strict low fat? I don't have sugar problems either, but I don't want to over-carb, given the Alzheimer risk. Maybe I'll handcraft a MIND/Mediterranean type diet focusing on low glycemic. Lots of veges, berries, bit of kangaroo and fish, bit of grain/pasta, bit of colored fruit, colored root veges like sweet potato, no booze. Time will tell. Wish me luck.

[SusanJ]

Time will tell. Wish me luck.

Wow, what a story. So sorry to hear that you had to go through all of this. Diet is exceedingly difficult to tease out for some of us, and I do wish you loads of luck and persistence.

Would you be willing to add your information to the Ketonic Diet wiki page? It is certainly a cautionary tale for those considering embarking on a ketogenic diet. If you don't know how to edit it, maybe talk to TheresaB, who did the original entry.

Ketogenic diet wiki page

[Blissful1]

I am so glad I searched apoe4.info for collagenous colitis and found this. I am a homozygous for APOE4 and my mom had Alz so I started working with a functional doc and we did many tests and I began on the Keto diet. I was doing supplements mainly for type 3 Alz like the detox cube from Quicksilver (excellent supplements). We got the keto meter and my hubby would prick my finger first thing in the morning to check that we were in ketosis. The Doctor provided a book with recipes and we kept track of exactly what I ate and what my keto score was each morning. After some months I got 'liquid diarrhea' and often so it was depleting my energy. After this continued for months I decided I better go off keto to see if that made it stop.
I stayed GF and DF I just added back some GF bread and some fruit. That worked for months and then I got the dreaded D again. After months I tried the keto again and after getting the D back I asked my GP for a referral to a GI specialist and got a colonoscopy. I never did get one before so at 65 I got one and some biopsies and was diagnosed with CC (collagenous colitis).
I have high cholesterol anyway but always had good HDL but after some months on keto my lipid test showed HDL going the wrong way. I will check to see if the triglycerides spiked.
I joined a few support groups on FB for microscopic colitis and CC and most people on there say they can't eat hardly any vegetables. I found that I had to give up salad, and veggies and that sucks as I was eating mainly salad with 'meat as a condiment' and now I can't have veggies. ugh.
What have you found you can eat now?
My son told me to get BPC-157 so I have been taking that for a few months now.

I don't eat tomatoes or spices (which I miss) and I am DF and GF. I am in 'remission' from the D but I am so bloated and full of gas.

[Tincup]

A quick note that a higher carb diet, coupled with caloric restriction, fasting and/or exercise can be used to generate ketones as an alternative to a high fat diet. I've been keto adapted since 2009, but my diet today typically has between 80 and 180 g carbs/day. I will typically test between 0.5 and 1.0 mmol/L serum beta hydroxybutyrate fasted in the morning. My fat intake is not enormous, though I haven't run the numbers since 2017. If I do an extended fast, my serum glucose just drops and ketones rise, with no "keto flu."

[Blaire]

Can you explain /more info on a higher carb diet? Thanks

[Tincup]

Can you explain /more info on a higher carb diet? Thanks

Simply, insulin controls ketone production. When insulin is low, ketones are made, when high, they are not. Except in an insulin dependent diabetic, you can typically say the same of serum glucose. The exception is in an insulin dependent diabetic when they don't have enough insulin, you can get both high glucose (300 or more mg/dL) and high ketones (say > 15 mmol/L) - this is known as ketoacidosis.

This is why ketones will rise on an extended fast - insulin drops. If someone is not keto-adapted, then it may take a few days for the ketone system to "come out of mothballs."

A typical way to keto adapt is to restrict carbs, moderate protein and not worry about the fat for dietary intake. If I were sensitive to fat, I'd probably keto adapt by either extended fasting or restricting carbs and fat. Once adapted, carb intake will stimulate insulin (as will protein, but generally at a rate 54% as much as carbs, on an equal calorie basis). Then it is a matter of how to structure your eating patterns as well as quantity to stimulate ketone production. I personally don't consume processed food. The typical ultra processed food will stimulate insulin very quickly. In my case I typically fast 16+ hours/day and exercise at the end of that fasting period. I don't overeat and at 65 maintain my weight to what it was in grade 10. I'm also lean - I have a skinfold thickness an inch above my hip point of 3 mm.

Everybody is different, but these are the variables:

Quantities of each macronutrient: carbs, protein and fat
Exercise timing, volume and intensity
Regular fasting length (how much time every day do you fast).

Hope this helps.

[Julie G]

First, so sorry to hear about your experience, SarahB. Thank you for sharing- very educational and a good warning.

As you are probably aware, many of us implement a ketogenic approach VERY differently which results in low triglycerides and a healthy gut microbiome by combining a long daily fast with exercise and a heavily (non-starchy vegs) plant-based diet with adequate protein (wild-caught seafood, pastured eggs, occasional pastured beef, lamb) and primarily poly and mono-unsaturated fats like high polyphenol EVOO, avocados, nuts, seeds, etc.

I can't help but wonder if a different type of keto would yield better results for you?

[MsCindy]

I'm also totally prone to colitis and severe diarrhea and have had to work with my Bredesen plan diet and supplements, which I've been on for 3 years now. I'm 66 and my father's whole family died of Alzheirmers, so I'm really serious about this plan.

On a super low carb diet, I didn't get great ketosis. It was between 0.4 and 0.6 most of the time, and I couldn't achieve the 1.0 that Bredesen recommends, despite fasting 17 hours per day religiously. But when I added 1/4 -1/2 cup of blueberries to my diet every day to help slow down the diarrhea, and great unintended consequence was that my ketosis shifted up and stayed up to the 0.6-1.0 range. I was really pleased, and stayed with that for about 6 months. Recently I started adding in a couple of higher carb things, again to deal with my perennial problem, and now magically my ketosis is up to 1.0 consistently! Also my blood sugar was always in the 90's, and I couldn't get it lower on the super low carb diet, but with a few carefully chosen veggie carbs plus blueberries, my blood sugar is now consistently in the 80's! So I'm thrilled!

I'm not a scientist, but I think what happens is that when my carbs are really, really low, my body pumps up insulin to try to increase my blood sugar, which it does, and which also knocks back my ketosis. More healthy carbs calms my body down, and allows my insulin to drop, my blood sugar to drop, and induces ketosis.

One thing about me that may be part of all this is that all my life until my mid-50's, I was always borderline hypoglycemic, with blood sugar from 50-53 very, very consistently, despite a high sugar, junky diet until my mid-30's. It was weird, and I was always worried about it. So my insulin responses have never been "normal."

Cindy