Some pesky kids would be welcome right about now.

January 15, 2023 11:01 AM

Please help me solve an elusive medical mystery that is causing me to disappear very slowly. Epic poem inside.

Please answer this question ONLY if you or someone you know has had similar symptoms and has been treated successfully. I don't want speculation, I'm already doing that.

Tl;dr: I have trouble digesting and assimilating food, especially fat, but probably protein as well. This is despite my faithful ingestion of betaine HCL and Solgar digestive enzymes with each meal. This is causing degradation in my skin, VEINS, hair, nails, and muscles, although I can in fact build muscle mass with bodyweight workout.

Some more detail for you sleuths to help rule out some things:

• I am a cis woman, 57 years old, low to normal weight for my height.
• I have no other metabolic disorders, and I've always been healthy.
• Thyroid: Free T3 is a little low but not terribly so. Free T4 and TSH are fine. Reverse T3 is very low, which is actually a good thing as I understand.
• Saliva cortisol is at the high end of normal throughout the day.
• Inflammatory markers are very very low, almost nonexistent. Again, that's what we want to see, I believe.
• Negative for celiac.
• Positive for candida, whatever that actually means from a symptom perspective.
• I did test positive for the longer-term Lyme antibodies back in 2018, and that may have been wreaking havoc slowly over the last few years.
• I am in menopause.
• I've had COVID twice, since the onset of the symptoms I describe. I believe this was due to my D3 levels being low thanks to... not being able to assimilate the supplements I was taking.

Starting in August 2021, my cholesterol, which had been normal with great "good" levels for decades, shot up to > 250. There it has stayed. I am normal weight (or below) and was on a keto diet at the time. Menopause occurred around the same time. I rarely felt hungry and starting pooping little bullets, although I didn't feel constipated (thanks electrolytes!)

Starting in the spring of 2022, I started having wretched, nearly constant, very stinky intestinal gas. Probable cause: my stomach dumping undigested food into my small intestine. I felt like food would sit in my stomach for hours. Around that time, the high cholesterol began to be accompanied by high blood amylase and lipase.

I stayed on the keto diet for a while after the onset of these symptoms. Over time, my appearance changed from muscular, lean Skinny Pete to scrawny and sad. But I started noticing that high fat meals absolutely killed me: I'd be on the couch in a coma an hour later.

So I moved to a higher carb diet, somewhat lower fat diet while keeping the protein where it was. I also added a good dose of betaine HCL and Solgar digestive enzymes (containing, among other things, lipase) with each meal.

What's going on now: I assimilate my food a little better thanks to betaine HCL, digestive enzymes, and replacing some fat with carbs, but things are still not right.

• I say I am "disappearing" because my skin breaks easily: it seems much more fragile than it used to be.
• My veins, which were always strong enough to withstand blood draws easily, now collapse easily on a blood draw and it's hard to find them in the first place. This scares me the most, I think.
• I have put back on a little body fat, which was much needed, but my weight is still low-normal. If I eat junk, the weight goes on, but for obvious reasons I'd rather not do that very much.
• I am often fatigued during the day: caffeine is my motor.
• I eat around 1400-1500 calories a day, with generous amounts of animal protein, more on workout days. This is what's recommended for me by several different nutrition calculator apps - we old folks simply don't need that many calories!
• Yes, I can still do a bodyweight workout and build some muscle, which is puzzling.
• My hair is a dry disaster, and my toenails really don't grow at all anymore. (Fingernails, on the other hand, are fine.)
• And I still have more than my share of stinky gas and food sitting in my stomach for hours.

I am scheduled for an abdominal CAT scan at the end of this month. I've seen various functional doctors, none of whom could give me a good answer (and one of whom prescribed liver tonics that actually made the skin problem worse). And I have yet to find a good digestive doctor who's really taking this seriously other than to order the CAT scan.

Difficulty level: I live in Spain and my Spanish is good, but not great. Few doctors speak English, and interpreters seem to be unknown.

Again: I really want only those opinions that are informed by experience or clinical observation.

posted by Sheydem-tants to Health & Fitness (14 answers total)

Some of your symptoms, and especially your mention that you feel like food is sitting in your stomach, make me wonder about gastroparesis, or slow stomach emptying. I had a lot of pesky symptoms and was very, very sick for a long time. It's a complicated story, but slow stomach emptying was one of the underlying causes.

They test for this by feeding you breakfast with a bit of a radioactive marker, and then they check your stomach at intervals. Three hours or so after eating, when most people have cleared 92% of food from their stomachs, I had only cleared about 22%.

I'm managing pretty well via diet at the moment, but meat and fatty things are absolutely the worst for me. I eat almost no meat of any kind, though I can tolerate modest amounts of chicken and fish, and very small amounts of beef, occasionally. If I overdo it, beef is the thing that will sit in my stomach uncomfortably for hours and then come back up, essentially undigested.

I hope you get some answers. What you're going through is miserable.
posted by Well I never at 11:39 AM on January 15, 2023 [7 favorites]

I had a friend with a problem digesting fat and she needed her gallbladder removed. I suppose if you’re not getting enough fat and nutrients your skin (which is fat) would be effect especially. I also checked and it looks like the elevated blood levels you mentioned are also elevated in people with gallbladder disease. Since you didn’t mention having your gallbladder checked I thought I would mention it! Best of luck it sounds very difficult.
posted by catspajammies at 11:54 AM on January 15, 2023 [8 favorites]

The gas could be lactose intolerance. I realized I had lactose intolerance a little over 15 years ago. I also had serious inflammatory arthritis. I decided to give up dairy for a month to verify lactose intolerance. I felt so much better, I have it up altogether, and while my arthritis has slowly returned and progressed, dairy seems to aggravate it. There's dairy in tons of foods where you don't expect it, but try a month without it and see if it helps.

Raw leafy greens and fermented foods(fresh sauerkraut, kimci) help with repopulating healthy gut bacteria.

fragile skin, collapsing veins, low body fat, fatigue, dry, brittle hair & nails suggests sjogrens syndrome and/or rheumatoid arthritis; a friend has this set of symptoms, though your inflammation markers argue against it.
posted by theora55 at 12:56 PM on January 15, 2023 [1 favorite]

Sounds a lot like pernicious anemia, which results from an inability to absorb vitamin B12.

The receptor for B12 is secreted by the same parietal cells in your stomach which make stomach acid, and your deficiency there strongly suggests the possibility of PA.

By the time I was diagnosed, my nails were like waxed paper, and my LDL cholesterol was 4330, which my hematologist said implied "massive cell death" — not too surprising since I’d lost 60 lbs. in the last couple of months.
posted by jamjam at 1:53 PM on January 15, 2023 [5 favorites]

I don't know, but I think you should consider posting your question to CrowdMed. Here's how it works:

CrowdMed is an online platform that connects patients with difficult medical conditions to a medical community that uses its collective intelligence to find the right diagnosis. When a patient has a rare condition or non-specific symptoms, getting an accurate diagnosis can be a costly process that takes months or even years. CrowdMed harnesses the combined savvy of more than 20,000 doctors, nurses, medical students, and others to offer suggestions that patients can then bring to their doctors in-person to help expedite the time to find a correct diagnosis. Launched in 2013, CrowdMed has already helped more than 2,000 patients get closer to finding the right diagnosis.

posted by alex1965 at 2:00 PM on January 15, 2023 [8 favorites]

IANYRD, but in addition to the recommendations above I'd also recommend you seek out advice from a registered dietitian/nutritionist; we are trained and licensed medical professionals who can help assess your diet for nutritional adequacy based on your signs and symptoms as mentioned, plus your age/medical history/etc. An app is a great start to guessing what your calorie and macro needs are, but a licensed professional can really get you individualized help - we call it Medical Nutrition Therapy, and in the US it's generally our purview.

Your signs/symptoms point to possibly some sort of malabsorption going on (esp re: skin/hair/nails [protein], elevated cholesterol, and loss of body fat/decreased ability to regain it [fat], any more specifics and I'm veering into MNT which, again, legally protected), and once you get a diagnosis of what's actually happening, it's much easier to get individualized advice. Digestion/digestive enzymes are one part of the process of assimilating food into nutrients, but it's not the whole picture.

You may be able to work with a US- or UK-based provider via telehealth, and it's possible that hospitals in Spain have interpreter services just like we do in the US to help with getting that information.
posted by OhHaieThere at 3:34 PM on January 15, 2023 [4 favorites]

1400-1500 calories is too low, so it makes sense that you’re losing weight. Recommended minimum for a sedentary 50-60 year old woman is 1600, so if you’re working out, you will need more than that, more like 1800 or even 2000 calories per day, to maintain your weight. Consistent under-eating causes many of the symptoms you listed (hair, nails, skin, bad veins, slow digestion).

Try raising your calories and adding more fat to your diet- maybe an avocado or a couple egg yolks each day.
posted by pseudostrabismus at 3:47 PM on January 15, 2023 [20 favorites]

Seconding gallbladder as a thing to check out.
posted by brainwane at 2:22 AM on January 16, 2023 [1 favorite]

Do you have abdominal pain?
posted by cotton dress sock at 8:51 AM on January 16, 2023

You say “negative for celiac.” What was your diet at the time you were tested? Because keto has the potential to also be very low gluten, which could mean that a blood test is not sensitive enough to detect your body’s reaction, but you could still be consuming enough gluten to cause intestinal damage.

They advise you to be eating at least the equivalent of a slice of wheat bread each day for at least 3 weeks prior to testing for the test to show positive if you have celiac (and it would still miss like 20% of celiacs unless they had even higher gluten consumption). A slice of bread has about 5g of gluten (5,000mg).

But just 50mg of gluten can cause intestinal damage if you have celiac disease. So it would be easy to fall in that gap between testing positive and having symptoms if you’re eating low-but-not-no gluten. Which kind of describes keto…
posted by Kriesa at 11:36 AM on January 16, 2023 [1 favorite]

A late add to my above comment -even if you reconsider the possibility of celiac disease, I would *not* advise you to tinker with your diet or try to go gluten free - it would take months to years to heal even if celiac is the cause, and it’s only one possibility. I’d lean more toward loosening all your restrictions and seeking retesting. (You also say that you can put on weight when eating “junk” but don’t want to for obvious reasons - it’s not at all obvious to me under your circumstances - especially since I doubt you mean living on Cheetos and Lucky Charms).
posted by Kriesa at 11:47 AM on January 16, 2023 [1 favorite]

Vitamin C complex deficiency, and probably A, from the Keto diet. If your blood labs go up by many degrees then make sure you are not dehydrated. Keto diet will push up cholesterol. Vitamin C, Rutin, and bioflavenoids help maintain your circulatory system, and Vitamin A skin and inner eye. Here is a discussion of keto diet side effects.
posted by Oyéah at 3:35 PM on January 16, 2023 [1 favorite]

IANYD.

I don’t think one can rule out pancreatic insufficiency. It’s not clear to me that the Solgar product has been assessed by a pharmaceutical regulatory body, or what dose you are taking and whether it’s adequate. I am concerned by your description of an elevated lipase. I believe one cannot rule out pancreatic insufficiency or chronic pancreatitis based on your description and I would try to get this question answered by a gastroenterologist.
posted by chiquitita at 3:14 AM on January 17, 2023 [2 favorites]

Just ran across this today: Risks and burdens of incident dyslipidaemia in long COVID: a cohort study.
posted by jocelmeow at 7:30 AM on January 17, 2023