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mslee

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Everything posted by mslee

  1. mslee
    Well after 30 years of symptoms & 16 years of countless Doctors & labs I can tell you pin pointing which autoimmune condition you are dealing with is no easy task. About 9 years ago they dxed me with SLE Lupus, gave me treatments that didn't work for me...I just kept getting sicker & sicker. 2 Years ago they found celiac & I can't get a straight...
  2. mslee
    Hi There! I wanted to let you know you are not alone, I was dxed with celiac in July of '08 I have been gluten free ever since. A couple months before my celiac dx they thought I had autoimmune hep. my labs had shown it for almost a year. So they ordered a liver biopsy, & they said the results really surprised them....my liver was very healthy with only...
  3. mslee

    ARCHIVED Lupus

    mslee replied to mslee's topic in Related Issues & Disorders

    thank you for the replies! Nasalady have you been through treatment for lyme? amcken3, I hope you are doing ok! & have been able to cut gluten out of your diet. I have been fighting with the yeast issue but have come to the conclusion healing my gut is the first step to getting rid of that...the diets did help but only went so far because of all...
  4. mslee
    Hi Nasalady! I think I have it, I have a dx of sle lupus & fibro as well as hashi's & celiac. They have checked out my heart a couple times & my lungs, no cause of pain found so we (Drs & I ) are guessing inflammation somewhere in the chest..which can be a symptom of lupus or fibro. didn't know it could be a symptom of celiac. good...
  5. mslee
    Yes they are both autoimmune, I have sle lupus & have been trying to understand the connection. After talking to a few Dr & other with these medical conditions it seems the when you have one autoimmune condition you are likely to have more than one. A couple Drs I saw said it's possible the untreated celiac might have caused my lupus. I get another...
  6. mslee
    I have both, & sle lupus dx 97 2008 told I've had hashimoto's antibodies since 2001 (no treatment until recently) 2008 celiac dx I never really had typical hypothyroid symptoms other than fatigue, cold body, & dry skin. They found abnormal labs & I have been on levothyroxine for 4 months but haven't noticed any huge difference in the way...
  7. mslee
    Hello, I was dxed with lupus & then with celiac 8 years later. Many symptoms have gone away, but some have also changed... Like I feel more muscle pain now than before going gluten-free, also a bunch of new food sensitivities. I have been strictly gluten-free/soy free for almost 2 years & mostly dairy free as well. My ANA has stayed the same. ...
  8. mslee
    Hi Guys! I don't know if you remember me, but I haven't been around for a while either...but I have a bunch of autoimmune stuff going on too. I posted about Lupus, I have been wanting to get back to you but had an insurance mix up & still waiting to see new Rheumy to get another opinion about lupus & celiac. See him in a little over a week....
  9. mslee

    ARCHIVED Lupus

    mslee replied to mslee's topic in Related Issues & Disorders

    catching up on the links! thank you they are helpful & interesting! I found this one (some up dated info on zonulins) while looking further into it.., Open Original Shared Link
  10. mslee
    Just now getting to this post...lots of helpful info here, Thank You! I'm rusty on the labs, glad you got some answers. Yes as for the 11 dx criteria, it counts if you have had the symptoms in the past. I never thought I had the malar rash (do have sle lpus), because the it was never itchy or raised...looked like rosacea. But recently it looks...
  11. mslee

    ARCHIVED Lupus

    mslee replied to mslee's topic in Related Issues & Disorders

    Hi, Just wanted to let ya know I'm still here, the end of the year is always crazy! I have some apts coming up with highly recommended Dr.s so I am hoping for some more info soon. Have been discouraged by the whole health care bill thing...hoping for the best. I am lucky I have decent insurance...just not any options for one covering an LLMD. ...
  12. mslee

    ARCHIVED Lupus

    mslee replied to mslee's topic in Related Issues & Disorders

    thank you for the replies! I have had a busy weekend & have not had a chance to read up on all the links but will for sure! Nasalady, I too have had some lyme labs come back positive recently...but due to insurance issues I may not be able to get treatment for a while. I'm wondering if the lyme could be the root. I will get back to you t his...
  13. mslee

    ARCHIVED Lupus

    mslee posted a topic in Related Issues & Disorders

    Hi, Just wondering if there are others out there who have lupus (I do), or who were diagnosed with lupus before celiac & had it turn out to be "only" celiac. I am surprised how little info there is here on the subject. I have had 1 Rheumatologist say it is common to have both & another say it is very uncommon. If you have any info I would...
  14. mslee
    oh, wanted to add I had to play with elimination diets to pin point problem foods. I think there was such severe damage that my only chance to get better was to cut out problem foods. It will be a couple months until I have labs run again (for lupus/sjogrens/raynauds/liver etc) but will let ya know if there are changes.
  15. mslee
    Hi Chasbari, I'm guessing with sjogrens your ana remains positive? I'm not sure if I read it on the LFA site, or in one of the many books I read trying to understand all this...but I know lots of people with lupus do claim florescent lights bother them. Sun exposure is a known trigger of lupus. They always said they don't know what causes lupus...
  16. mslee
    Hi, I have SLE Lupus & some autoimmune thyroid activity, also pre sjogrens & was developing autoimmune hep. when they found the celiac. The liver has normalized after being gluten free for a year and a half. But other autoimmune conditions continue. I posted in this thread https://www.celiac.com/gluten-free/index.ph...mp;#entry580569 ...
  17. mslee
    I have sle lupus it was diagnosed 7 years before they found the celiac. I have seen two highly respected GI's, 2 Rheumatologists, 2 Internists & a Natropathic Dr since my celiac Dx. They all think the two conditions are related, 1 GI & 1 Rheumy claimed it was probably "only" celiac all along. But I saw neither of them long term & the other...
  18. mslee
    Hi Lauri! Yes I have SLE Lupus as well as celiac, also allergies, hashimoto's, autoimmune hep & probably raynauds too (waiting on some labs) Check out the thread Mother of Jibril posted, but yes there are more of us here...when you have one autoimmune condition it is common t o have several. lucky us! anyways here if you have questions...
  19. mslee
    Mother of Jibril, You could try the ophthalmologist, like someone mentioned they can do some tests...although I have a friend w/lupus who tried that & she said the test they did was stick a little piece of paper in her eye & it hurt so bad!...she made them stop & gave up. But if they do put you on prednisone it will probably help with any...
  20. mslee
    Oh I hope it's not a sign of glutening! I have had badly chapped/split lips since going gluten free, I have tried everything...no chap stick/lip gloss (in case there was an ingredient I was sensitive to), tried straight olive oil or coconut oil, tried all natural brands like badger balm, tried petroleum based like "chap stick" or nivea, tried taking more...
  21. mslee
    Hi Again! Yes I remember talking to you a little about your niece but lost the thread. I have a few in my family in denial, my sister tried going gluten free all her rashes she has her whole life cleared up but she said it was too inconvenient to continue "maybe someday if it really makes me sick". At least my Mom has gone gluten free & is better...
  22. mslee
    oh! I'm sorry to bring up bad news I know what it's like needing a break for Dr.'s especially when you throw a few jerk Dr.s in there! I would recommend keeping an eye out for a GOOD Rheumatologist in your area, you can find pretty good reviews on citysearch & google maps. Or see an internist & have them run labs. Because now a days it...
  23. mslee
    Hmm that does sound like alot of prednisone, I hope they don't have to put you through that If they do make sure you are taking calcium & D. I'm not sure what they are going to do with me, I left a message for my Doc about my concern of the metotrexate... but he had gone home early so will not know until next week. There are not a whole lot of options...
  24. mslee
    Wow you have been busy! I kinda did the same thing, went & saw a specialist for every system of my body that was having problems. You have mostly good news! good! I'm glad you are seeing a GI, that's when I finally got some answers! Did the Rheumatologist see that your kidney's were releasing protein? Lupus nephritis can cause that. Just be...
  25. mslee
    I did a search most threads are pretty old. Didn't look like there were too many but a small handful of celiacs here with lupus or mixed connective tissue disorder. I've had it for a long time, but it's just now starting to get a little scary. Anyways would love to chat, see how you handle it & what types of treatment they have given you. You can...
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