Omg - Could I Have Lupus?

[jnclelland]

My main symptom - which has dramatically improved on the gluten-free diet - has always been rashes on my face and one hand. I've always assumed it was just eczema - and it definitely isn't DH - so I've just been glad that going gluten-free finally made it go away! But today I came across some pictures of lupus on the internet that look JUST like what I had, so now I'm totally freaked out!

Here's my history: about 8 or so years ago, I had a butterfly-type rash on my nose and cheeks, very much like the picture here:

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And I remember very clearly that it got worse after exposure to sunlight, because I thought that was really bizarre - who ever heard of an allergic reaction to sunlight? I was doing NAET treatments at the time, and believe it or not, it got dramatically better after I did an NAET treatment for sunlight.

My rashes were better for a long time after that, but then for the last year or two before going gluten-free, I started having rashes like this picture:

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Not quite so much on my cheeks, but EXACTLY this pattern along the sides of my jaw and neck, and a little on my forehead as well.

So now I'm all freaked out! I have never had any systemic symptoms of lupus, but apparently it can occur with only these skin symptoms. So now what? Obviously stay the hell off gluten, but what else? Since my symptoms are gone now (which means nothing to biopsy), is there any point seeing a doctor about it? Am I getting all worked up over nothing?

Jeanne

[Rachel--24]

It could be nothing. If its something that will continue to bother you (it would probably bother me to some extent) they can easily test you for lupus with a bloodtest. They tested me a few times for lupus but I never had a butterfly rash.

[Fiddle-Faddle]

Hi, Jeanne,

I'm wondering the same thing about myself, so it looks like we're in the same boat. I've always had rosy cheeks, but lately it looks less rosy andmore rash-like, though it's smoother than the pictures you showed on the links in your post.

I'm glad to know there's a blood test for it--I didn't know there was one. The other thing you might look up is rosacea, which at least seems a bit more benign. I did come across a mention of rosacea and H. Pylori in the stomach--wonder if it'll end up being connected to celiac?

[Guest Robbin]

I don't want to say this is true for you, but I am sensitive to sunlight and get a rash when I am in the sun sometimes. I have had this happen since childhood. I'm thinking it goes with extreme sensitivities/fair skin, but not sure. Hope you get it resolved with something benign.

[jnclelland]

  Rachel--24 said:

It could be nothing. If its something that will continue to bother you (it would probably bother me to some extent) they can easily test you for lupus with a bloodtest. They tested me a few times for lupus but I never had a butterfly rash.

From the little I've read online, it sounds like a blood test only detects systemic lupus, not discoid (cutaneous) lupus. That has to be diagnosed from a skin biopsy of the lesions, and I no longer have anything to biopsy. (Which is a GOOD thing!) I seriously doubt that I have the systemic type, although I guess a blood test to rule it out wouldn't hurt. But I'm kind of reluctant to ask my doctor for one; I don't want him to think I'm a hypochondriac or he won't take me seriously about anything!

Jeanne

[Nancym]

There is a drug induced Lupus too, so perhaps you were reacting to a drug you were taking?

Talk to your doctor, he'll probably order a few tests. Do you have other symptoms?

I thought I had Lupus too, turned out I had a different autoimmune disease. :\

[mommida]

Lupus, like Celiac is very hard to diagnose. Get a Dr. refferal for a specialist for further testing. There are medications that are prescribed for Lupus patients and a gluten free diet. Do your research on Lupus.

Laura

[jnclelland]

  Nancym said:

There is a drug induced Lupus too, so perhaps you were reacting to a drug you were taking?

Talk to your doctor, he'll probably order a few tests. Do you have other symptoms?

I thought I had Lupus too, turned out I had a different autoimmune disease. :\

What kind of drugs can cause it? I don't think I was taking anything other than birth control 8 years ago, and haven't taken that for over 6 years now.

No other symptoms - and now that I'm gluten-free, no symptoms at all!

Jeanne

[Guest jhmom]

Hi Jeanne,

If your rash went away after going gluten-free I would bet it was DH and not a lupus rash but you should still mention it to your doctor but you are right they look similar. They should run some tests and refer you to a specialist if necessary. Not everyone with Lupus has the butterfly rash, I have Lupus and don't have a rash on my face however I do break out in a rash on my legs if I'm in the sun too long (photosensitivity).

Let us know how you are getting along. Take care

[Carolita]

Hello, I'm Carol. I'm new to the forum.

I have been tested for Lupus and it is not something that is easily diagnosed. A rheumatologist could perform the necessary test such as ANA and others. Talk to your doctor. It can also be yeast. Some people are allergic to yeast and they develop sking rashes after a while. I'm on a yeast free diet at the moment and it has helped me a lot with the Celiac symptoms I have. I just found out today that my Celiac test came back positive but the yeast free diet has helped me control some of the symtpoms. I will be starting a Gluten free diet as well. Talk to your doctor but don't panic, if you are feeling better after following a gluten free diet maybe your body is getting back to where it needs to be. My ANA came back + before I started the yeast free diet but it is now negative. ANA + does not mean you have Lupus but it does mean you could have Lupus or any other disease associated with an overactive immune system.

Hope you find answers soon.

Carol

[jnclelland]

Thanks for all the replies. Now that I've had some time to calm down, I can't decide whether it's really worth going to the doctor. What am I going to say? "I don't have any symptoms now, but I USED to have a rash that looked just like this picture I found on the internet." If *I* were my doctor, I'd ask me what on earth I expected him to do then? (I don't have any systemic symptoms, and the skin-only type can apparently only be diagnosed through a biopsy of my now-nonexistent rashes.) I'll probably mention it the next time I'm in for a routine physical, but I think I'd feel too silly to make a special appointment for that.

Interestingly, I went back and found my old NAET records, and I had totally forgotten that lupus was one of the things that came up for me to be treated for! It took a bunch of treatments to clear, but my face rashes got a lot better after that. I've always been kind of on the fence about whether I actually believe that NAET is for real, but going back and finding that was kind of spooky!

Jeanne