It seems like one of the big pointers for autoimmune disease is weight loss rather than weight gain, but I seem to be gaining. I'm still being assessed by both neurologists and rheumies for a variety of symptoms. I have a strong family history of autoimmune disorders, the classic malar rash, what looks like livedo reticularis, and various other lupus like symptoms. In the past, I was diagnosed with coeliac disease (another autoimmune thing) about 10 years ago, and rather than having weight loss with that, again I gained a lot of weight, which dropped off me again once I was diagnosed and went on the gluten free diet. Now again I am gaining weight fairly rapidly as I go through yet another flare of this mysterious illness. I thought it might be fluid, but went to GP who said it was just wind that was making my belly so much fatter (waist measurement increased 4 inches in a couple of months). My face also feels like it is swelling, particularly after lying down in bed at night, but my ankles aren't swollen. I'm not particularly active due to mobility problems, but do move around as much as possible, and I'm hardly eating much at all due to continual GI problems (dificulty swallowing, feeling full really quickly, nausea, etc). From my much reduced calorie intake I should be losing at least a pound if not two a week, but I'm not losing anything at all. What confuses me is that everything is saying that I should be losing weight, rather than gaining, and thats not the case. Can anyone offer any explanations?
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My update
Thanks for all your input. Just to add a few more things:
Re: diet. I think I am doing all the right things here. I don't eat late at night, have small meals, etc. I have counted calories the last few days and haven't had more than 1600 cal a day, and that would be average at the moment. I'm not particularly active, but do use an exercise bike a little and move about as much as I can. I haven't been active for two years or more, but the weight gain has really only happened in a big way in the last few months. Before that I was fairly steady.
I did wonder about fluid retention, but my GP pooh poohed that idea. I don't have swollen ankles, but my belly has got really fat (4 inches waistline gain in a couple of months), my face seems fatter (GP said not) and I have virtually lost all facial creases. I used to have quite deep creases around my mouth, and now there are none. This is particularly bad in the morning when I wake up, and what I think is swelling almost seems to block my sinuses and make it a bit difficult to breath until I sit up. My fingers seem fatter particularly in the mornings with not being able to move my ring at all. My GP also doesn't see the need to do repeated blood tests, even though I'd like him to check kidney function as on several occasions I have had protein in my urine. My urine varies from fairly strong to very very weak. If I have dipstick done on weak urine it doesn't show anything, but on average strength it has definite protein. I pass around 3.5 litres a day, so I suspect that on balance I could be passing quite a bit of protein a day if I had a 24 hour urine done, which again, GP doesn't see the need to do.
Re: drugs. I am currently on meds for neurological symptoms (undiagnosed). I take baclofen 80 mg a day, paracetamol and codeine and ibuprofen for pain, and diazepam when muscle spasms get too much. I also take metoclopramide (I think it is the same as reglan) for nausea and stomach problems (but haven't seen a gastro specialist since diagnosed with coeliac nearly 10 years ago)
My symptoms aren't new. This has all been going on, and increasing for 3 years now, with what I now realise have been shorter episodes in the past for many many years. I once had a positive anti-cardiolipin antibody test, but when repeated by GP here it was normal. My last ANA was 1:40 nucleolar speckled. Anti DsDNA neg, and lupus anticoag neg. Complement normal, but at the bottom end of the range. None of these tests have been repeated in the last 18 months (again GP doesn't see the need). I have now been re-referred to a rheumie and will prob see him in September. He is a generalist though and not a lupus specialist. I am also waiting for another neuro opinion, and to get a suprapubic catheter put in (currently have indwelling cath because of neurogenic bladder, and too many infections when doing intermittent cathing up to 8 times a day).
Thanks for all your input. Just to add a few more things:
Re: diet. I think I am doing all the right things here. I don't eat late at night, have small meals, etc. I have counted calories the last few days and haven't had more than 1600 cal a day, and that would be average at the moment. I'm not particularly active, but do use an exercise bike a little and move about as much as I can. I haven't been active for two years or more, but the weight gain has really only happened in a big way in the last few months. Before that I was fairly steady.
I did wonder about fluid retention, but my GP pooh poohed that idea. I don't have swollen ankles, but my belly has got really fat (4 inches waistline gain in a couple of months), my face seems fatter (GP said not) and I have virtually lost all facial creases. I used to have quite deep creases around my mouth, and now there are none. This is particularly bad in the morning when I wake up, and what I think is swelling almost seems to block my sinuses and make it a bit difficult to breath until I sit up. My fingers seem fatter particularly in the mornings with not being able to move my ring at all. My GP also doesn't see the need to do repeated blood tests, even though I'd like him to check kidney function as on several occasions I have had protein in my urine. My urine varies from fairly strong to very very weak. If I have dipstick done on weak urine it doesn't show anything, but on average strength it has definite protein. I pass around 3.5 litres a day, so I suspect that on balance I could be passing quite a bit of protein a day if I had a 24 hour urine done, which again, GP doesn't see the need to do.
Re: drugs. I am currently on meds for neurological symptoms (undiagnosed). I take baclofen 80 mg a day, paracetamol and codeine and ibuprofen for pain, and diazepam when muscle spasms get too much. I also take metoclopramide (I think it is the same as reglan) for nausea and stomach problems (but haven't seen a gastro specialist since diagnosed with coeliac nearly 10 years ago)
My symptoms aren't new. This has all been going on, and increasing for 3 years now, with what I now realise have been shorter episodes in the past for many many years. I once had a positive anti-cardiolipin antibody test, but when repeated by GP here it was normal. My last ANA was 1:40 nucleolar speckled. Anti DsDNA neg, and lupus anticoag neg. Complement normal, but at the bottom end of the range. None of these tests have been repeated in the last 18 months (again GP doesn't see the need). I have now been re-referred to a rheumie and will prob see him in September. He is a generalist though and not a lupus specialist. I am also waiting for another neuro opinion, and to get a suprapubic catheter put in (currently have indwelling cath because of neurogenic bladder, and too many infections when doing intermittent cathing up to 8 times a day).
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