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up late

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Everything posted by up late

  1. up late
    The rhuematology workup was normal except for high calcium, it's been both high and normal before so he's retesting. He also said if I have another flare up I can get seen straight away so I'm not going to be left to deal with it all on my own like I was back when all this started.
  2. up late
    I'm having a LOT of trouble loading this site, can someone post a link to the low fi version? *crossed fingers I don't lose this post too* Alergy clinc today, they did a diet review, I am totally gluten-free. Amines, preservatives and dairy are now removed completely on a month trial. I had some improvement cutting down from what info I had over the...
  3. up late
    I would definitely talk to your doctor about this and I'd be extremely careful if they increase your dose. Alcohol increases the effect of medications, it can also increase the effects of food intolerances. Rum has a reputation for making people aggressive but I think that's a bit of an urban myth. I can't take Lexapro. I tried it once, took just one tablet...
  4. up late
    I've been getting this for years, the nightmares, yelling, waking up, even sleepwalking, it's worse when I'm under stress or overtired. I got told I had PTSD :/ (combined with anxiety and odd sensations that went away gluten-free) I'm starting to think now it's not that at all.
  5. up late
    My knees and calves have started to go down a bit, the bottom of my calves tho feel hard as a rock. I've managed to get things to settle a bit with the anti inflammatory, strong OTC pain relief, wearing tight stockings and staying off my feet, fingers crossed nothing else happens before I get to the specialists. I've just stripped my diet back to something...
  6. up late
    Hi Loey, You're in good company, seems a lot of people on the board have had similar problems. I don't know how routine blood tests are after a coeliac diagnosis, I had to ask to have my vitamin levels checked becuase of vitamin deficiency symptoms, I also requested a bone density scan because I was getting bone pain, not to alarm you but I have osteoperosis...
  7. up late
    I didn't leave alcohol out of the equation. I usually try cider, wine or champagne and don't often get to the 2nd drink before I feel like I have a blinding post bender type hangover that lasts several days, I tried top shelf scotch once and got the same reaction. Needless to say it's not something I've done often.
  8. up late
    I'm already booked into the allergy clinic for review next month but I'm pretty sure it's not gluten, if anything I'd be looking at amines which I had a mild reaction to, I'm ok to eat it but it might be causing me some problems if I'm eating too much of it. Things like the fruits, salads, veg and Asian style foods I substituted for the cake/deserts, bread...
  9. up late
    You're not going to believe it but I had another flare up just before the weekend. After 3 ER visits, 2 drs rooms, 4 chemist shops, a rhumatologist, 3 medication reviews and much gripeing about the healthcare system (mostly from the drs) I finally landed on a drug combination that's showing some promise (prescription anti inflamatories, something to kill...
  10. up late
    Ack, now my computer's decided to play up. I've just read the referral to the rhumatologist, my Dr's put in the neurologist report, it suggests I should be referred to a psychiatrist!!! It's pathetic, I'm suffering and the people who are supposed to be getting to the bottom of it are off speculating about my sanity? I'm sick of drs who write patients...
  11. up late
    I went back to the Drs, he thinks it's most likely Fibromyalgia, I'm not just going to accept a diagnosis if I can't see sufficient evidence that I have it though. Especially when it doesn't fit the profile, doesn't respond to treatment and is progressing, so for what it's worth I'm off to a rhumatologist next. I'm going back to the allergy clinic later as...
  12. up late
    I was negative for the antibodies but positive for the genotype, apparently that's something that happens with the igA deficiency. A Dr I spoke to recently said they have a new blood test they do when they test antibodies because the one I was negative for wasn't reliable. Shingles could be a possible, my grandmother used to get it, she was actually hospitalized...
  13. up late
    I go back to the GP tomorrow. I expect the next referral will be to a rhumatologist who'll likely check my thyroid again, I'm pretty sure my GP didn't do T3. B and parathyroid were fine. Could my ovaries have anything to do with it? My free testosterone is slightly high (cholesterol, BP, estrogen and progesterone normal) I've had problems with cysts before...
  14. up late
    What's the treatment for Lyme? I've already had several kinds of antibiotics for various other things (keflex, flagyl, doxycyline, and trimethoprin) and multiple courses including long term low doses. This started after I got out of hospital when I was on trimethoprin, the first symptoms I had sound like viral encephalitis before it suddenly turned into what...
  15. up late
    RPA was where I went, I did the elimination diet too. So many kids there, for a while I thought I was their only adult patient. .
  16. up late
    Well the official line is that Australian ticks don't carry Lyme disease, but here's a local article Open Original Shared Link if it isn't here yet I'm sure it's only a matter of time. I don't think it's that though, considering 2 gastrointerologists and multiple GPs missed coeliac for 18 years when in hindsight it was blindingly obvious I had it (anemia...
  17. up late
    I had a similar problem, unexplained weakness and tingling like you described and carb intolerance (not just weakness but also fluid and tingling after eating carbs). I recently had some kind of attack and now I've got more symptoms (I posted on it in it's own thread if anyone wants to look it up in my posting history) I found low carb helped at first...
  18. up late
    I get them too, oddly more when it's cold, it's when I get shivering with them I go to the Dr. Low grade fever could cause night sweats. Did the dr check your urine for a urinary tract infection? They can be chronic and don't always have pain with them.
  19. up late
    Hi, I'm in NSW as well. The coeliac society has some pretty comprehensive material but they charge for it, apparently they have a book with all the brands in it, Open Original Shared Link they also give some advice over the phone, the number's on their website. Gravox, Massel (stock), Country life bakery, While's (soup), Merriram (cereal) and fountain...
  20. up late
    There are also allergy specialists and allergy clinics who are well equated with coeliac and it's complications. Don't be surprised if you're sharing the waiting room with a lot of kids though, they treat adults but tend to deal with a higher volume of children. I don't know what immunologists do, I think they're more in the lab.
  21. up late
    The antibody test can produce false negatives even in a coeliac eating gluten, it's generally the biopsy that's considered diagnostic with drs. There is more than one way to skin a cat however. There is another blood test you can have that isn't diet dependent. It's the gene test, from memory there are 2 markers on the HLA strand of DNA that indicate a...
  22. up late
    Sjogren's syndrome did cross my mind, could dry mouth be what's causing the gum recession? Apparently Sjogren's can also attack other parts of the body too but I haven't found much online that goes into that to see if my symptoms are similar. I've been getting chest pain and heart disturbances too but normal resting ECG, low BP, cholesterol etc. Low absorption...
  23. up late
    I spoke too soon on the TCA, it's stopped working (seems all it did was make me sleep better and I lost that effect once I started to get used to it), I'm on codeine to hold me over till I see the doc next week. My pain's started getting worse, I'm back to being cold intolerant, my ears are ringing really loud, my eyes are so dry the inner corners are sunken...
  24. up late
    Dry mouth can be something as simple as a side effect of medication. Chewing gum sometimes helps and there are artificial saliva substitutes, a lack of sufficient saliva can contribute to dental problems like cavities so it's a good idea to treat it. Excessive thirst could indicate another (not uncommon and very treatable) autoimmune so I second checking...
  25. up late
    That was the diet I did, I was an outpatient at Royal Prince Alfred Hospital. It took several months to complete, I was methodical in taking the notes and did it exactly as they said. I got a + for a preservative and some intolerance to amines. I've booked in to go back in November (the first appointment I could get) so I might find out something then. The...
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