I am an absolute medical mystery. I’ve been to Dr after Dr and none of them have the skillset to fix me, this includes the national health service and private.
My problems started 100% after I started a high meat diet a few years back, similar to that of an atkins diet. Within weeks of starting this diet I got hair loss, greying hair and numerous throat ulcers. My neck also swelled into what looked like some sort of goitre just to the right of my throat. I stopped the high meat and the ulcers stopped, but other issues have remained. My stools aren’t as easily passed as before, occasionally with a black stripe in them. I notice this black stripe if I have a cigarette (I don’t smoke but sometimes have one with a friend).
Nobody has ever been able to figure out why. The only things that come back with tests are low Vitamin D, despite me supplementing megadoses of it for about 4 years. Calcium in blood came back low in my last test about 6 weeks back, in previous hair mineral analysis calcium has come back high.
We did suspect malabsorbtion problems with the vitamin D and I had an ultrasound for gallstones – nothing. And my other fat solubles were fine, so I assume that was ok. I am absolutely at a loss what to try next, what other tests I could have etc etc. Please help even if you give me some other things to get tested for or to rule out in a process of elimination.
Oh goodness, so sorry you are having so much trouble! Here's everything I've got!
I'd get checked for Celiac Disease - simple blood panel, and symptoms resolve with a diet change, not drugs. It's a disease that makes you have a physical reaction to gluten (wheat, rye, barley, or oats). I assume that you probably dropped a lot of the wheat and such in your diet on the high meat diet, yes? Well, when you go off of gluten, as a celiac some rather odd things can happen. One, it can heighten your reactions to any wheat, rye, or barley you consume after that point (we don't know why, just know it seems to happen). So you can feel sick, have issues, with any subsequent gluten eating.
Also, when you are eating the gluten, your body's immune system attacks your intestines and you are nutrient deficient as a result. So when your gluten level goes down, like on the high meat diet, then you start to heal, and your body's immune system may be able to focus on the rest of your body again. At that point, many people suddenly have other issues that crop up, because their body actually has the resources to respond all of a sudden.
Vitamin and mineral absorption issues - your absorption as a celiac is all over the map. Some things absorb more because you'll usually have a leaky gut, some absorb less. You will usually be low in vitamin D. Calcium is another one that you will absorb oddly - some celiacs seem to metabolize it wrong, so that they have a higher chance of stones, but I don't know if that will give you a high calcium reading, as well. But I do know that many celiacs end up with low calcium levels after a certain point, too.
Hashimoto's Disease might be a secondary issue. Celiacs have a heightened chance of getting this. It involves your thyroid and an enlarged goiter is often a symptom. It was thought that you could only get this after a certain age, but celiacs can be prone to developing it earlier. Hair loss can also be involved with this. If you went essentially low gluten, your body might have suddenly had enough resources to start reacting as THIS disease wants, which is to attack different parts of your body.
the black stripe - if you aren't absorbing things properly, perhaps you are ingesting something along with the cigarette that is simply flushing all the way through your system?
mouth/throat ulcers - they can be a symptoms of celiac disease. But again, it can be weird. Some people get these when they go off of the gluten, some have it before they do, some people only get them if they are off gluten and accidentally ingest it. It depends on if your body has enough of the immune system in reserve to react to gluten, etc....
allergies - celiacs are also more prone to allergies. My son, a celiac, gets mouth ulcers if he eats gluten AND dairy - it can be very strange and difficult to track down that sort of thing, but might be worth looking into as well.
Even if the test is negative for celiac disease, I'd recommend trying the diet (you can easily google it. It's just a matter of avoiding certain foods). There is growing evidence of numerous people suffering from non-celiac gluten intolerance that causes essentially the same symptoms.
Have they done a full PARATHYOID panel in addition to the Vit D tests + a FULL thyroid panel? The calcium issues and the throat and all that may be thyroid or parathyroid related (hair loss/constipation).
The allergic reaction may have skewed things across your entire body and now things are reacting differently in other areas.
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