Not looking for a diagnosis, just for an idea what kind of doctor to make an appointment. I’ve been visiting doctors for the following issues for over a year now and I still can’t find the problem causing it all.
I (25m) am very weak and my neighbor that’s 75 years old seems to have more strength than me, I currently don’t exercise, but even back when I did exercise for months, I was always way too weak. I used to work in a factory previously and guys with the same small and weak body constitution as mine were much stronger than me.
Daily, especially when I lay down for 10, 20 minutes and in any time of the day, I get this special kind of tiredness and sleepines accompanied with something that feels like neuropathy (feeling as if I have warm water in my legs and hands, even though I’m not swelled at all) and when I get this feeling, I must sleep. It however seems like it is not related to “regular sleepiness” itself, I can sleep normally for 8 or 9 hours, be refreshed and then after a few hours randomly get this tiredness, or maybe get it in the evening or maybe not get it at all that day. I always get it after I eat pasta, so that points to gluten, but I can also get it randomly in the morning before eating, even if I didn’t eat gluten for the last few days. I can get it sitting or laying down, but mostly when laying down.
This sleepiness/neuropathy continues for as long as I am laying down, it stops only when I move my body for some 15, 20 minutes by walking. It doesn’t however go away if I just start exercising, I think it might have something to do with spending longer times in an upright position, like walking for a longer time.
My appetite is very low and I barely eat the minimum required calories
I often lack concentration and forget things
My nose is stuffy every day for years now
As I said, I’ve been to loads of doctors and I’ve done pretty much every regular blood test, diabetes, hepatitis, thyroid, neuropathy test and so on, but everything comes out as perfectly fine. I’ve done 2 gluten intolerance tests and both came out negative, but I’ve also done an ELISA food intolerance test that has like 40 different food categories and it showed I have high intolerance to basically every type of food including Gluten, so that’s the only thing pointing to celial/intolerance other than pasta causing my sleepiness.
Proper antibody testing and biopsy can pretty much rule out celiac disease; identifying non-celiac gluten intolerance is much less straightforward and largely relies on strictly eliminating gluten from your diet for up to six weeks and seeing if symptoms improve. If they resolve but recur on reintroducing suspect foods containing gluten, that’s a pretty good indicator that you have a problem with gluten.
There are a number of unreliable “food intolerance” tests, so beware of lab reports indicating widespread food incompatibility.
The symptoms you describe overlap considerably with non-G.I. syndromes, so a comprehensive medical workup hopefully would identify what’s going on.
The problem is that I’ve already done pretty much every test that I and my doctors could think of and I am out of ideas, all I could find are consequences, for example I used to have anemia before I started taking iron supplement, I had resolving gastritis and proctitis, I still have constipation from time to time, this sleepiness thing I described above and so on, but none of those are the issue itself, but things that are consequences of something.
I have tried a gluten free for about two weeks, but I couldn’t keep it up and stopped, but in that period I had no changes in symptoms, maybe it was too short of a time frame, so I’ll try again when I think of a better diet, more recipes and prepare better for the next time.
Then you need to bump things up. Ask your doctor for a referral to an internal medicine specialist, and prepare to ask them for a neurology referal if needed.
A friend of mine was certain there was “something wrong” but his doctor made vague recommendations, like “get more sleep”. He eventually got a referral to a neurologist who did lots of tests but came up empty. The first neurologist referred him to a second neurologist, who finally diagnosed my friend with mesial temporal sclerosis.
He’s not cured, but at least he knows what is wrong.
Have you ever tried natural probiotics (not pills, real naturally fermented foods)? There’s a lot of interest in fermented foods these days and a lot of claims of health benefits. I’ve been making kimchi and sauerkraut at home but there are good grocery store brands available if you look for them. The idea is that many people don’t eat much raw foods these days and are lacking the natural gut bacteria that aids digestion; a couple of bites a day is all it takes.
Depending on where you live you might be able to buy kimchi, sauerkraut, fermented pickles, etc. Look for stuff that contains probiotics – something like kimchi will be in the refrigerated section and the label with state “Open carefully over the sink” because it is still fermenting and will bubble up when you open it.
Kimchi comes in mild and spicy versions and also in vegan versions that eliminates the fish sauce.
Bubbies.com is one national brand of sauerkraut that contains live cultures; there are some others, but be aware that most of them are pasteurized and don’t contain live cultures.
I have no idea if a healthier gut biome is what you need, but if you try that, don’t overlook yogurt and kefir. Those are my go-to treatment for gas and other mild intestinal annoyances.
This remark stands out to me; I’d think that being generally malnourished could explain the weakness/tiredness, and that getting a decent ‘normal’ diet going would be the first step, prior to removing gluten, or adding probiotics.
I second trying a GF diet; two weeks isn’t long enough to know if this is right for you. I know people who must follow that diet, and if you emphasize what you CAN eat vs. what you can’t, it’s really not that difficult or expensive. It’s definitely easier and cheaper than feeling terrible all the time.
The only concern I have with you going on a gluten-free test is that doing so can initially lead to eating less, which would not be good if your having trouble making your caloric requirements. So, if you so attempt it, make sure you don’t eat any less.
But your lower appetite could definitely be a problem. I’ve had that as a GI symptom, and it made existing issues worse. I found it was actually nausea, and antinausea stuff helps. Also, I drank a lot of sugary drinks, as I could drink them much more easily without feeling full, though I still had to spread it out. (That’s my general advice on getting in more calories, BTW. Spread things out.)
I don’t know if any of this is helpful, but I do wish you good luck. I know how much it sucks to be sick with weird symptoms and not know what the problem is.
I was going to guess diabetes, but that’s been ruled out.
I know people who have weird food intolerances that aren’t “gluten” or allergies. Wheat intolerance is fairly common, and you could have that without being sensitive to gluten, per se.
I would start with a good internal medicine doctor, but perhaps you’ve tried that. If you think it might be food related, a nutritionist might be a good specialist to try.