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About mslee

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  1. 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 answer if I have both or just celiac....some Drs say yes both, some say untreated celiac caused lupus, now they say they doubt it's lupus. Anyways with autoimmune conditions if you have one you are likely to have others. Some scarier than others. I do have hashimoto's, celiac, arthritis, allergies, asthma, colitis, are other autoimmune conditions that run in my family... that's another thing they do run in families. For many autoimmune conditions the treatment is the same regardless of the name they put on the condition...they are all some form of your immune system attacking your own body. I think spinal tap is needed to dx MS but they can run MRI's & nerve tests to see if they find any abnormalities. Those tests are less invasive I've had them...no so bad.Had never heard of syringomas, but just googled them & have seen them before...look like in most cases they are harmless. Also lots of people I know with lupus have enlarged lymph nodes that are not because of cancer or anything. Probably good to have it checked out but try not to worry too much. ANA is the basic autoimmune condition test but as I have found out celiac & hashimoto's can cause this too, as well as having a family member with an autoimmune condition, or it's just normal in some people. A Rheumatologist is supposed to be the Dr to see for autoimmune conditions but I have found they focus mostly on arthritic conditions. Have very little input on non arthritic autoimmune conditions - like celiac...they send ya to the GI who focuses on the gut not the other symptoms...so sometimes it feels like there is not a specific Doc to help with the confusion of autoimmune illness. Still I would see if your primary will refer you, if your Dad had MS it's probably worth looking into. They can run a bunch of tests, some pick up on specific autoimmune conditions other are more general. Hope your having some luck! Feel free to ask me questions any time.
  2. 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 minor inflammation. My GI thought my liver labs would normalize going gluten free...& they have! It did take almost a year. But they have stayed normal since. Now healing varies from person to person, I'm one of those who needed to do alot more than just gluten free & two year later still have alot of healing to go. I found out pretty quick my body would not tolerate soy, cow dairy, or most grains. I had a bunch of new food allergies & sensitivities. My Drs now think leaky gut is a problem. So don't get discouraged it's a major life change & takes some experimenting but over all we feel much better off gluten-free than while consuming gluten. As for the autoimmune stuff...I also have hashimoto's, colitis, raynaud's, sjogrens & possible lupus. & Yes they say if you have one autoimmune condition you are likely to have more. Most are not too serious (a few are but they should see those in labs/symptoms) most are treated the same way...prednisone & it will reduce inflammation, help the pain & make you gain weight. If you are on it long term it has some side effects so try to stick with it as needed. I get mixed info about my autoimmune combo, some say I have all some say some, some say the untreated celiac caused them & they may get better with time & being gluten-free. Just wanted to share, hang in there! Ask any questions you need...hope you feel better!
  3. mslee


    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 the food sensitivities. Check in with us if you like, it's nice to have support. Well I have talked to a couple more Doctors, I still get mixed info. some say celiac ould have caused lupus, some say hey are a common combo, some say no that's very uncommon to have both, some say you may "only" have celiac. I see a new Rheumatologist next week, hope it goes well & I get some good info. just wanted to touch base I feel like a feak of nature. lol wahhhh my new GI did acknowledge leaky gut & said it could be why I have a ton of other food sensitivities.
  4. 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 luck! hope you are feeling better!
  5. 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 opinion next week, but if you start showing symptoms of more serious autoimmune conditions see a Rheumatologist, some show up in labs I'm pretty sure scleroderma does. Good luck!!! Sure hope you don't have to deal with that.
  6. mslee

    Hashimotos Relation?

    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 I feel...my limbs do feel warmer that's about it. Oh I did see a new GI yesterday he & a couple rhematologists have told me celiac & hashimotos are a common combo.
  7. 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. My liver enzymes were high & they thought for sure I had autoimmune hep right before they found the celiac. They even did a liver biopsy which confused them because it came back very healthy despite what my blood labs showed. My enzymes quickly normalized after going gluten free. Anyways, I saw your post & wanted to say HI! Curious how your apts have gone. I get to see my new Rheumy in a little over a week to get another opinion on the whole issue. Will post what I find out. I had posted about Lupus there were a few others with input if you are able to find that thread it may be helpful too you. Good luck! Hope you feel better!
  8. mslee

    Mast Cell Activation Disorder

    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...finally! Mother I'm glad they finally put a name to your condition, sounds interesting...sorry it's been no fun. Will look into it more, had never heard of it until you brought it up. Anyone ever hear of Oral Allergy Syndrome? I'm wondering if I'm dealing with that as well. Seems everything I eat makes me sick in some way or another. Glad to hear your ok & have a dx, will be in touch... have a good one!
  9. mslee


    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.., http://www.news-medical.net/news/20090908/...s-identity.aspx
  10. 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 just like that pic you posted with rough patches I have also learned that the sun sensitivity does not always mean you get a rash, it causes dizziness, headaches, drained feeling, intense sleepiness. Typically the treatment for most connective tissue/overlap/lupus like conditions is the same regardless of the exact condition...so you are on the right track. Gemini, Hi we spoke a while ago...hope you are feeling better. I hope you can find a GOOD rhuemy, just to make sure everything is ok. I know it's no fun, but the earlier lupus is caught the safer we are. Just make sure your organs are in good shape. The Lupus Foundation has this page to help find Drs in your area... http://www.lupus.org/webmodules/webarticle...4&zoneid=35 Chez, I agree going about it as a naturally as possible is the best route. I am young, so I have opted not to take the pain meds or any meds I don't need to save organs. As of now I am med free...but think things are progressing so I don't know how long that will last. Plaquanil is supposed to be one of the safer drugs to take, the eye damage is typically reversible once the med is stopped. But it never helped me, so I don't take it. I do take the omega3's & heavy duty antioxidants to fight inflammation, plus vitamins & eat lots of those spices you listed. The gluten-free diet has forced me to eat pretty ridiculously healthy
  11. mslee


    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. Lyme sounds so complicated, but I have heard they think it can trigger autoimmune conditions (which I do have a lot in the family too.) The symptoms are so similar to Lupus, I guess it can be hard to pin point if it's one or the other or both...so hard to be patient but I'm trying! They found I had celiac about a year & a half ago, before that they dxed me with autoimmune hep. since going gluten free my liver labs have normalized...hopefully yours will too, nasalady. Sounds like we have alot of similar symptoms/conditions if you like keep me posted I will let ya know what my Drs say...if they come up with anything interesting. Have Happy Holidays you guys!
  12. mslee


    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 week, I am happy to have someone to talk to about all this...sorry that you have to go through it Wolicki, That is wonderful news! My ana has remained abnormal for over a year but it's time to have it checked again, still I have started getting the malar rash for the first time in my life & have pleurisy, joint pain that has gotten worse even since going gluten free. I'm not giving up hope, will continue to be patient & hope with time things get better. At least my liver labs have normalized that is positive.
  13. 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 like to talk to you. Thanks!
  14. 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. 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, but it seems to be coming out that like celiac if you have the gene + triggers you end up sick. There is a drug induced lupus, I am not sure if antibiotics are on that list, if I find out I will post it for ya. Do you still see a Rheum.? Do the still suspect lupus or do they say it was celiac instead? good luck to you! take care!