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mslee

Member Since 18 Aug 2008
Offline Last Active Sep 30 2010 10:42 AM
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Posts I've Made

In Topic: Is There A Type Of Dr That Specializes In Autoimmune Diseases?

25 September 2010 - 04:34 PM

Thx for your response. Yeah, that is very technical- so are you saying that CD4+ and CD8+ T cells are the same cells that are in the celiac intestine? That is very weird! I wonder if a Rheumatologist would know of this connection.

It just seems that these syringomas are so rare and I found an article saying that the first case of eruptive syringomas was reported in 1987, that is so recent. I doubt a lot of Dr's would have insight to this since it seems so abnormal/rare.

It does seem coincidental though. I have my follow up appt to go over the endo biopsy Friday with the GI Dr, so I will ask him, but I doubt he will know :(

I've just had so many weird symptoms this year, I am wondering if they are all connected somehow. My other weird symptom was 2 enlarged left axillary lymph nodes that no one could figure out. They were painful too. They were enlarged for about 6 mos, but on my last ultrasound they were back to normal size. It was scary, I was referred to an oncologist for fear of lymphoma.

Thanks!


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.

In Topic: Celiac And Now Autoimmune Hepatitis

06 September 2010 - 07:49 PM

On Aug 13, I was officially diagnosed with Celiac Disease and 12 days later, was diagnosed with Autoimmune Hepatitis with Stage 4 Fibrosis...wondering what is next???

I have only been on my gluten-free diet for 2 weeks and 2 days ago, started taking Prednisone and 6-mp for the AIH and am having issues again with everything that I eat! I have dropped 6lbs in 2weeks and scared to lose anymore weight but eating is making me very sick.

My whole story is on my profile page but I would love to hear if others are/have been in the same boat. I just don't know what to expect with all of this.

TIA,



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!

In Topic: Lupus

26 August 2010 - 06:41 PM

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.

In Topic: Does Anyone Else Have Costochondritis?

26 August 2010 - 06:30 PM

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!

In Topic: Scleroderma - What's The Connection?

26 August 2010 - 06:20 PM

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.