Gained 14 lbs on keto over 5 weeks despite strict compliance


(TJ) #1

I’m primarily making this post to get the advice from the great experts here on a particularly tricky case (me). This is where my thinking is currently headed, and I’m open to anything else that could be a root cause for my current issue beyond one of these three things:

  1. Any known issues with Crohn’s/ileitis and the keto diet
  2. Any known issues with PrEP/Truvada for HIV prevention and not being able to obtain ketosis or lose weight
  3. Hormonal issues or other known indicators that may be undermining ketosis and/or weight loss, due to PrEP/Truvada or something genetic

First, I want to table discussion around the minutia of what I’m eating/drinking; I’ve seen other threads try and tackle the issue of weight gain on keto but those threads seem to inevitably honed in on one very small thing that a person listed must be the cause of the problem. I can say with very high certainty that I have been completely compliant with the keto diet principles around what goes into my body and have heavily researched and planned everything out based on credible keto diet books and guides. This is not my first time on keto; I’m very aware of hidden carbs and hidden sugars in foods; and am in general just very meticulous, at great expense both time-and-money-wise.

In terms of exercise, I have purposely done low-resistance, steady aerobic exercise to avoid putting on muscle mass/increasing the scale, and exercise with moderate intensity three times a week with intermitted walking in between (I take public transit/walk to work). But again, I’d really like the focus to be on my broader questions. All I can say is I don’t believe exercise is the problem here, just like I don’t think food/compliance is the issue.

Next, some context about my experience with keto.
I did the keto diet successfully a year ago, at the 20 gm or less carb level, for about a month-and-a-half. I was testing in at “Moderate” to “Large” on the strips starting after the first week; had the secondary benefits of reduced appetite; and definitely had the keto flu, which is eventually why I stopped doing it. I lost about five to eight lbs. from start to finish.

I was learning during that time and it turns out I was making a few mistakes with some foods I had assumed were safe. Surprisingly, I was still in that “moderate” to “large” phase in the strips.

The only two significant changes between then and now are A) I’m actually even more compliant now on keeping the carb count and calories low, and B) I started taking PrEP/Truvada 9 months ago.

Now, here’s what’s going on right now:
I am male, 6’1”, was about a 34” waist and weighed in at 210 lbs at the doctor five weeks ago. I full-on adopted the keto diet again the next day at the 20 gm carb or less/higher fat/etc. level. Yesterday, five weeks after that weigh-in, I weighed 224 lbs on the same exact weighing machine with roughly the same exactly clothes/shoes, other than my pants are 36” now.

I’ve been using keto strips and started coming out at “trace” on the strip after a few days. Then, after about 10 days, I started coming out as “small,” and peaked at somewhere between “small” and “moderate” at about three weeks in. The past two weeks, I’m hovering very close to “small.”

I noticed there was a problem at about that 10-day mark, when my 34” pants suddenly became very, very tight on me to the point I couldn’t put them on. It’s like suddenly a switch occurred, and whereas I would have expected to begin losing weight at that point, suddenly weight was piling on. I’m completely on 36” pants now (and 14 lbs heavier, apparently).

The past five weeks, I’ve had secondary signs that I am in ketosis despite my readings not indicating I am (though my strips are expired by now):

  • My appetite has significantly decreased. Sometimes I’m not even hungry anymore; other times I’m less hungry than I would have been. I’d say my hunger has had a 40-50 percent reduction the past five weeks.
  • I’ve had to pee like crazy, at some points I’ve had to pee a lot within just a one-hour time frame and rushed out of a meeting because of it.
  • My face has significantly improved in appearance/bloat, with excess fat in my chin appearing to have melted off. Just looking at my face, I’d say I was at about 205 lbs. again. My stomach and love handles have also improved to a lesser degree than my chin/face.

However:

  • I’m surprised, though, that I haven’t felt the keto flu. At no point have I felt like “Oh, this is it.” I’d say I’m experiencing about one-forth of the degree of keto flu symptoms when I first did keto last year.
  • My pants situation has gone to the extreme, as if my fat distribution went from my chin and abdomen to everything below the waist.

Here’s why I’m trying to investigate complications to the keto diet/situations in which keto could make things worse.
First, I was diagnosed with ileitis, a type of Crohn’s disease, in my teens. Accompanying that are severe sensitivities to gluten, HFCS, alcohol and other foods that are just bad anyway. Crohn’s has caused my weight to fluctuate over time due to the relapse/remission cycle, with my relapses resulting in me obviously not digesting food at all (just goes right through me). Throughout the cycle I seem to gain a few pounds each time as my body exits starvation mode. I began taking Pentasa about two years ago and haven’t had a relapse of ileitis since.

Second, I started taking PrEP/Truvada as I’m a high-risk group and it’s the right thing to do. I don’t have HIV and take it as a preventive measure. I’m finding inconsistent information online about how Truvada affects weight, other than it does, and there are known issues with Truvada and fat distribution.

Here are the medications I’m currently on; the latter of which I started 9 months ago, which is in between the time I first did keto and now.

  • Pentasa, 500 mg for Crohn’s/ileitis
  • PrEP/Truvada, 200 mg for HIV prevention

Last details:
I’ve asked the doctor I saw yesterday to evaluate me for any blood-related indicators of something else that could be going on to cause my extreme weight gain the past five weeks. He is going to do a thyroid test, and I asked him to do a resting insulin test. It feels like there should be more he should be testing, and after pressing him on it, he basically told me that this issue is beyond his area of expertise and I should find another doctor.

Hopefully someone on here can help me identify what tests I should be doing to potentially catch what could be going on.


(Donna ) #2

I’m sorry that you have had such a difficult start to Keto. It sounds like you have worked very hard to do everything exactly right. I’m sorry that despite that, something is obviously ‘off’ and I hope you can figure out what that is.

In the absence of any discussion about what you are eating/drinking, maybe it’s about WHEN you are eating/drinking? I don’t know if you are currently doing any IF/EF, but maybe some simple IF/EF with simple Keto would help. If you can’t fit all your macros in your window, don’t sweat it. Don’t overthink that part. Lots of people have had success with Keto plus IF/EF, maybe that is the missing key for you.

Watching Dr Fung’s videos helped me realize that it doesn’t have to be complicated.

Best of luck to you and KCKO :smiley:


(Mel Soule) #3

TJ, first sorry to hear of your stuggles and glad to hear of your enduring remission with Pentasa. Secondly, a wonderfully detailed post, rich in information. Thank you for posting it.

To your question regarding tests to evaluate your situation. No doubt in my mind you are already on the right path wanting to obtain a fasting insulin level. This will inform about your baseline insulin status and any pancreatitis that might be operating in the background to sabotage your efforts to benefit from this lifestyle.

If you already have recent fasting blood glucose and fasting triglyceride levels you can use the handy calculator to get a reasonable approximation. My FBS/Trig calculation is normal. This matches my two week old fasting insulin of 2.

This chart from Dr. Georgia Edes website I found very helpful with my doc in getting a recent fasting insulin, uric acid and CRP test to evaluate inflammation. My own reason to pursue LCHF was to quell systemic inflammation that made me a regular customer of OTC nsaids. From which I am now totally free.

Here is the link to here handy lab test chart http://www.diagnosisdiet.com/wp-content/uploads/2017/06/insulin-resistance-tests-rev-3-15-17.pdf


(TJ) #4

Thanks both - your words of understanding are very helpful for me to hear. The general medical practitioner I spoke to yesterday did not help things when he found I weighed 14 lbs more in five weeks, and took the typical approach of “clearly you’re doing something wrong and need to see a nutritionist,” when in fact when you follow keto, you are probably paying 95 percent more critical attention than most Americans as to what you’re putting in your body.

You both introduced things for me to look into that I didn’t know about before. I have tried fasting at a very ad hoc level and have heard of intermittent fasting, but the idea of IF/EF is new and I’ve got lots of threads to read about now. Extended fasting sounds kind of scary, but I’m game. I’m going to do some more reading on this.

For the insulin test information, I’m not as familiar with this kind of test, but if I understand correctly, this PDF looks as though I can get my basic resting insulin reading from my lame-o doctor and then do some interpretation on my own using other metrics I can find out myself. If this is the case, this is very helpful as I’m not going to get very far with my current doctor (he didn’t even suggest an insulin test). I moved to California 7 months ago and have had a very difficult time figuring out where/how to find the right kind of doctor in a whole new insurance system and new geographical area (East Bay), so the more that I can figure out on my own, the better.

Also, the last nutritionist and weight specialist I saw wanted to basically give me the Zone diet, which clearly is not the way people should be going based on the data out there and what I’ve read from the Obesity Code and other books. It’s not a good feeling when you’re more up-to-date than the doctors you talk to :frowning:


#5

Bloating is a common symptom of a food intolerance. You may want to get an allergy test done to make sure it’s nothing that you’re eating.


(Darlene Horsley) #6

There are a few Drs/Clinicians listed here that are reasonably close to your new location. Not sure how up to date this list is but it’s a possible starting point.

https://ketogenic.com/tools/keto-clinicians-finder/


(Brian) #7

I’m not sure if I read your post correctly but did you say that you’re restricting both carbs and calories?

The carbs, I understand. I’m not sure if you may be doing more harm than good, though, if you’re restricting calories.

I may have misread. No offense if intended if I did. And I hope you find the answers you’re seeking. I know it must be frustrating. Best of luck!


#8

Your initial post as @Bellyman indicated states you are keeping calories low.

If you are really being keto that should be ok as your body will take any needed calories from fat stores. While 20 grams of carbs should be good for most people, how much protein are you eating? Are you eating more than 1g per day per kilo of lean mass? Excess protein in the liver turns to sugar at a rate of 50% of carbs due to gluconeogenesis

I have no experience with your medication so cannot advise but do agree with what others have said about the timing of your meals. I try very hard not to snack and to limit my meals to two a day or less and in a short window of 8 hours or less. Each time you eat a little you stimulate insulin. The less you stimulate insulin, the more weight you will lose.

It seems odd that you have gained weight and it has redistributed. Is there a sex hormone component (estrogen or testosterone) to your medication? Asking I have no idea.

Is it possible that this is water weight and intestinal bloat of some type related to the colitis?


(TJ) #9

Thanks @Darlene_Horsley for that list. I just found an institute near where I live and two other doctors somewhat near me. This helps out a lot and puts me way ahead of where I was just yesterday because I’ve had bad luck with nutritionists/weight management folks in the past, and my current doctor basically told me that he can’t help me because my case is too complicated.

I am confident my issue is not around what I’m putting into my body at this time (other than timing) as I have had great success with keto last year, notably before when I was not on PrEP/Truvada, and every bit of food I’ve put into my body has been carefully planned with nothing unplanned the past five weeks. I’ve seen other threads on this forum about this issue devolve into back-and-forths about one specific food a person had eaten, and I don’t think it’s what’s going on with me right now. I’ve spent a lot of money and time on managing what goes into my body, which makes the 14 lb weight gain even more frustrating.

However, the ideas around extended fasting and frequency/timing are something I need to look into more. For the latter, I feel I have a pretty good handle on that aspect of things and know about the insulin activation thing, but I haven’t been as meticulous on this aspect of things as I have on what goes into my body. I have generally timed when I eat to two to three meals a day, and minimize snacking, all boosted by the fact that the appetite reduction aspect of keto diet is absolutely happening with me and I’m generally eating less than I was before. I’m at the point where I need to remind myself to eat at least one meal of the day because my hunger levels are that low. For the ability to not have excruciating, mind-debilitating hunger like I used to have before keto, I will always be grateful and consider the keto diet a superpower.

According to the last book I read that touches upon some of the issues I worry I may be facing, Obesity Code, it states that you only need to give someone insulin and they will gain weight, no matter what, other than the very extreme (and impossible) just not eating anything at all. My concern is that something about the macornutrient ratio combined with the PrEP/Truvada has triggered something in my body that is causing any nutrients I am putting in to go right into fat storage, and redistributing it to my lower half. However, while I’m good at reading books on the keto diet, where I don’t have expertise or a sense of where to begin is uncovering this very issue around hormones/insulin/thyroid/testosterone or other possible bottleneck that could be happening to me.

@4dml and @Saphire, the food intolerance/ilietis-crohn’s aspect of this is also a possible explanation for this 14 lbs weight gain that I haven’t given enough credit to, probably out of my coping mechanism of trying to minimize to myself how the disease has impacted my life. I have had some of my worse digestive symptoms in the past year in this five-week period, which I had chalked up to possible food poisoning at one point two weeks - there was a clear incident that clearly set my gut biosphere off-course and I haven’t recovered since. I’ve had GI symptoms every few days the past two weeks (“GI symptoms” is my polite way of saying something really gross), which unfortunately did not result in a lower weigh-in at the doctor, despite what logic and physics would indicate. But after such an intense loss of nutrients like that, perhaps I’m encountering a mini-cycle of starvation mode fat storage and bloat due to the possible food poisoning incident a couple weeks ago, compounded by my inflammation issues anyway from the ileitis/crohn’s.


(Darlene Horsley) #10

You are very welcome! Hopefully they are able to give you help along this journey of yours and I am quite certain you are on the right path.


(Damon Chance) #11

I’m currently reading “Why we get fat and what to do about it” and there is a part where he talks about patients on retroviral meds having severe issues with lipodistrophy. I’m not familiar with the preventative meds you listed but if you found that there is a possibility of fat gain and distribution issues then it seems like this is definitely where I would focus. Losing fat in face and middle only to have a larger deposit in the lower body seems very strange. How long ago did you start the Truveda? How much had you gained before starting Keto again?
Gut microphone issues is definitely something that seems easy to disturb with meds too. Especially since you already have issues there.
Might be worth listening to Jimmy More’s Keto talk episodes he has a functional medicine doctor that talks a lot about but issues. Looking at the list of doctors in your area the functional medicine folks will definitely be a better fit for someone that has but issues.


(TJ) #12

Thank you @d_to_the_c - this is the kind of information that is very helpful and I believe will get me closer to an answer to my issues.

PrEP, or pre-exposure prophylaxis, is an HIV prevention medication used to prevent HIV transmission. I started taking it in November last year, about two months after my first very successful attempt at Keto. The reason people take PrEP is if there are part of a high-risk community for contracting HIV, which is me (gay).

Some of the medication inside PrEP is the same as medication those with HIV would take (retoviral meds). When I ask the doctor who prescribes me PrEP with more information on side effect, the doctor has no information for me. A search online for information on PrEP has been very, very inconsistent. Overall, there’s much less helpful information on weight side effects of PrEP versus side effects associated with other medications such as anti-convulsants and SSRIs. If you spend 30 minutes looking up whether PrEP can cause extreme weight gain, you can find 5 different concrete anwers/theories rather easily, most of the contridicting one another. This is likely because PrEP is relatively new, and it does only affect a smaller subgroup of people.

Anecdotally, I can now possibly pair up comments friends of mine on PrEP have stated about it with my own experiences. One person who has been on it since PrEP was first introduced has an odd fat distribution in the lower half similar to me. Another friend complains about this, but I haven’t seen him naked so I can’t confirm if it’s the same thing happening to me.

My worry is that there’s something about PrEP that when combined with the macronutrients of Keto would cause such an extreme weight gain that I’ve experienced the past six days, despite excruciatingly careful planning and a bit of the self-imposed misery all entailed with starting out keto. It’s disturbing to spend so much money and time on losing weight to only do the reverse.

Out of concern that PrEP is causing this to me, I did stop taking it a couple weeks ago (and have made other life adjustments accordingly).


#13

Cannot speak to the PrEP but with regard to the Crohns, I have a close relative with it. She follows the specific carb diet (I think) that is what it is called. Perhaps you can see if any of the carbs they say to limit are what you have been eating.

Also, the Low Carb Leader Podcast had an episode with a woman who is an expert of the Fodmap diet for IBS (milder than IBD) I know

Unrelated, a couple of years ago I did the Plan from Lyn Genet https://lyngenet.com/

She claims she can find your inflammatory triggers with diet.
I lost 14 lbs in about 3 weeks and felt good but it is an extremely difficult diet. I find keto much simpler


(TJ) #14

Hi all - I’ve got a flat-out ridiculous update mixed with some forward moment. Right at this very moment, I just evaluated myself at the end of a surprisingly easy 36 hour fast. My entire lower half is definitely more bloated, puffy and lipid-y than it was before the fast began. My pants that fit pretty OK 36 hours ago can barely button together. My belt went up one-and-a-half notches. I didn’t dare try and weigh myself. But I have no need to feel shame or guilt that I could have possibly done anything wrong food or drink-wise. I followed the fasting guide in Appendix B of The Obesity Code and know with all certainty that this was not caused by food, because no food went in me.

But there’s more. First, I had some terrible gastrointestinal problems the first 24 hours, possibly related to some food I had the day before the fast that contained erithyrol. Let’s say I know I lost a lot of fluids and food that was in my system and didn’t get absorbed. (This makes my absolutely puffed up lower half even more mystifying.) Next, I’m absolutely covered in hives (urticaria) and my face under my right eye is very puffed up and pink. The places on my lower half where I’m very stunningly bloated and lipid-y are covered in hives. I’m absolutely having an allergic reaction to something.

Here is the only things that have gone into my body the past 36 hours.

The silver lining to all this is I have proven that in a 36 hour period I could gain weight or cause my pants to break and it is not due to food. This is a huge revelation for me. Just where could this bloat have possibly come from? Why do I look so much fatter after 36 hours of not eating anything? It’s even more evidence that something is going wrong that does not have to do with eating/diet decisions, but something very wrong in my body.

I have some questions about fasting that some folks who suggested it may be able to help me with.

  • Is it unusual to have a major allergic reaction like the one I’m having take place during a fast, or is this indicative of something else?
  • Is it unusual to have lower-GI issues (a lot of diarrhea) occur during the first 24 hours of a fast, or is this indicative of something else?

In terms of forward momentum, I am getting into the idea of fasting as a solution for my unique situation, this horrifying experience notwithstanding, as the folks on this thread got me started with some basic info that has led me to dig deeper and find out more. I hadn’t heard of extended fasting before and have heard of timing/intermittent fasting strategies, but hadn’t give it much focus. Now that I’ve done more reading on it, I feel comfortable with the idea and I think I can pull it off as my appetite is severely reduced after being on keto the past five weeks. I was able to pull off the 36 hour fast quite easily in terms of hunger and knowing what supplements to use that would help. (Just hoping that the supplements haven’t caused my severe allergic reaction.)

I also need to make an appointment at the institute near me with a keto-identified clinician, which I think will also be a good bit of forward momentum.


#15

Diarrhea is possible during a fast, whether short or long. I think I had some on one of my first 5 day fasts during days 3 and 4 and I could not understand what I ate.

Your allergy could be anything. Especially hives. I know lots of people that get hives from exposure to enviormental allergens, think of poison ivy. Could be a detergent, something on your clothes, something you are breathing in, mold or dust exposure or one of your supplements or something that you previously were exposed to yesterday or over the weekend. Did you make any recent enviorment changes, different cleaning products?

Could be one of your supplements or teas as well. I used to find when I drank a commercial prepared diet green tea that my stomach would get upset. Does not usually happen with a tea bag


(TJ) #16

For the allergies, I think I have a good guess at what could be causing them - the Bay Area wildfire smoke. live/work/spend most of my time in Berkeley, CA, which had dangerous levels of wildfire smoke a couple weeks ago. I’ve been having breakouts in hives since it all started. My eye area puffing up like it did today is something I started having when the wildfire smoke was really bad, and today’s case is probably the worse case of my eye area puffing up yet.


#17

Cinnamon allergy.

•Nausea.
•Stomach pain.
•Vomiting.
•Tingling, itching or swelling of the face or other parts of the body.
•Difficulty breathing.
•Hives.
•Dizziness.
•Fainting.


(Donna ) #18

agreeing with @Wishbone about the cinnamon allergy. It put me in the ER during a Disney vacation because I overdid it on cinnamon mug cakes I was making in the condo and bringing with me into the park so I could ‘eat low carb’ on vacation.

I could barely stand up straight, it hurt so bad, they thought I either had appendicitis or a cyst on my ovary, but they couldn’t find what was causing my horrible abdominal pain and bloating. They kept me overnight on pain meds. I did the rest of the Disney vacation in a wheelchair, my abdomen was SO tender. I couldn’t do any rides where I’d get jiggled.

It wasn’t until I got home and put 2 and 2 together that I realized that ‘more than just a tiny bit’ of cinnamon didn’t agree with me at all.


(Donna ) #19

I think you are on the right track with IF/EF and commend you for researching and the willingness to try it.

As a test, I’d try another fast, but with the LEAST amount of variables. Drink water and black coffee. Only supplement with salts if you feel tired or faint. Drop any other supplements, except for your Crohn’s medication. See what happens with that.


(Donna ) #20

Yeah, looking at that Men’s Vitamin, it contains:

Orchard Fruits & Garden Veggies
Blend: Blueberry, Orange, Carrot, Pomegranate, Plum, Strawberry, Apple, Beet, Cherry, Pear, Tomato, Cauliflower, Raspberry Acai, Asparagus, Banana, Broccoli, Brussels Sprout, Cabbage, Cranberry, Cucumber, Grape, Pea, Pineapple, Pumpkin, Spinach

What if something in there is causing the bloating? I don’t know. I don’t know how long you’ve been taking this particular supplement.

Cabbage, brussells sprouts, and broccoli all give me terrible gas pain work-over. I love these foods, but know that I’ll get gas and bloated after eating them.

Just try a plain water/coffee fast (you can go 24-36 hours without supplements other than salt – I know it feels scary, but your body can run off its fat stores for that long, without broth or vitamins.) Try no bells and whistles and see if any weird stuff happens. Let us know!

KCKO :smiley: