Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 28

Thread: New here... not yet diagnosed.

  1. #11
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Hi Digger...

    You're welcome. On the Benadryl..I believe it is 25mgs..take two. Take it early so you can wake on time....Sleep tight.

    If you use aftershave..cologne..avoid skin contact till the rash resolves.

    Sweet Dreams....
    Oluwa
    I have Lupus. So *^#@! what.

  2. #12
    Join Date
    Sep 2008
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    One more question before sleepy-time.

    The sores that are associated with Lupus... can they appear anywhere in the mouth? Mine always seem to prefer the right side of my tongue for some reason, but I've also gotten them on the inside of my cheeks, lips, and gums. Painful little suckers. White in the middle and really red around the outside.

    Dig

  3. #13
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Dig..

    Yep anywhere. I don't get the mouth sores, ulcers... but I do get the nasal ones. And what a stinky mess those are...and painful too.

    For the nasal ones, I keep moist with a bit of lube...

    Mine erupt out of stress...another thing we must manage. Lupus or not it is a good thing to manage..makes life more harmonious....

    While you sleep, keep your room cool..perspiration agitates the rash...

    Enjoy your dreams...
    Oluwa
    I have Lupus. So *^#@! what.

  4. #14
    Join Date
    Feb 2008
    Location
    Nova Scotia, Canada
    Posts
    1,692
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Hello and welcome digger

    I use Fletcher's liquid sore-mouth medicine. You can buy it off the shelf at the drug store.

    It works really well for me. I tend to get the mouth sores around the gum and on the inside of my lip. The tongue is a hard place to treat.

    I usually put the fletcher's on first then there is a paste called orabase. I use that if the sore is in an area that gets rubbed constantly. It coats and protects.

    It's gritty and discusting but it works :lol:

    One other thing I should mention...if you use colegate toothpaste....please switch to crest or another product. There is a chemical in colegate that can actually cause sores. I found this out from my dentist :shock: I had just started using colegate.

    Also if you are sensative to wheat or gluten, colegate contains glutens.
    Oh look ... a cookie

  5. #15
    Join Date
    Sep 2008
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi and thanks for the welcome,

    I use Ultrabrite actually, but I see on the tube that it is made by Colgate.

    I've never been diagnosed with a wheat/gluten allergy but interestingly enough I recently went on a low-carb diet to try and drop some pounds, and discovered that my chronic diarrhea went away. I've been thinking about eliminating grains altogether to see what happens. I also went completely dairy-free for a short time and it seemed to help my chronic sinus and ear infections. I've had inflammation of my left maxillary sinus since 2003 and my docs pretty much gave up trying to treat it. Even sinus surgery didn't help. That more than anything is what I really want fixed.

    Thanks again,

    Dig

  6. #16
    Join Date
    Feb 2008
    Location
    Nova Scotia, Canada
    Posts
    1,692
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Check the packaging of the Ultrabright, see if it names the filler they use. Should say gluten or something similar. If you have any doubts switch your brand of toothpast.

    Check and see if there is a local Celiac's society near you. If there is an office drop in and ask for one of their shopping guides.

    My sister has lupus and celiacs (that is a wheat intolerance). We went to the local office here and she got the shopping guide. It helps you to identify brands that use wheat products as filler. This can include medications.

    If you are going to be tested for celiacs, the doctors will not want you to mess with your diet as it will affect the testing. In other words they want to see how misserable wheat makes you.

    It might not be the wheat in the colgate that is bothering you. It could be another chemical. It's just very harsh on our delicate skin lol.
    Oh look ... a cookie

  7. #17
    Join Date
    Sep 2008
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks again everyone for the kind words and advice. Went to the ER the other day and got the rash treated and it's a little better. They put me on prednisone (short-term) which I don't particularly care for but I might as well get used to it I guess. Also got an appointment with a specialist at the end of the month and will hopefully get some testing and some answers. Just gonna hang in there in the meantime.

  8. #18
    Join Date
    Sep 2008
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi All,

    I got all of my bloodwork back today except the three Celiac tests which were sent off to Mayo.

    All of these were negative:

    Anti-Nuclear Antibody (ANA)
    Creatine Kinase (CPK)
    C-Reactive Protein, quant (CRPQ)
    Comprehensive Metabolic Panel (CMP)
    Rheumatoid Factor (RF)
    Sedimentation Rate (ESR)
    TSH reflex (TSH FLEX)

    These are still pending:

    Anti-gliadin Antibodies
    Tissue Transglutaminase IgA
    Anti-endomysial Antibodies

    The ANA was less than 1:40. Everything else was right down the middle of the reference range. At this point my doctor strongly suspects Celiac based on my symptoms, and we'll have those results next week.

    Just wanted to say thanks so much for the expert advice and support, and I wish everyone here the best possible health.

    Dig

  9. #19
    Join Date
    Feb 2008
    Location
    Nova Scotia, Canada
    Posts
    1,692
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Hugs Dig,

    How are you feeling today? Celiacs is quite possible. My sister has both lupus and Celiacs. The Celiacs went undetected for a long time as both my sister and our doctor put the symptoms down to lupus. Very similar.

    They finally caught it and now that she has been diagnosed and has changed her diet (which they do NOT want you to do untill you have been diagnosed, incase they need to do further testing and dont want the tests messed up) she has been feeling 100% better.

    Hugsss and keep us posted
    Oh look ... a cookie

  10. #20
    Join Date
    Sep 2008
    Posts
    14
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    That's nice of you to ask, sits_inthe_corner,

    I'm not feeling that great to be honest, but I will gladly accept a Celiac diagnosis if it explains my symptoms and gets me on the road to recovery. I just can't wait for all the testing to be done! I've remained heavily glutened for the process (I am a bread-o-holic), and I'll stay that way even if the blood work is positive so that it can be confirmed by biopsy, which means I have another 30 days or so. It's kinda tough consuming something that you know is possibly hurting you, but I was told it's always better to try and get a formal Celiac diagnosis if possible, rather than self-diagnosing and instituting the diet on my own. That way it's in my medical record.

    You take care!

    Dig

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •