Testing For Other Autoimmune Disorders

[nasalady]

  Mother of Jibril said:

What about other tests for autoimmune disorders? I was tested for ESR, RF, SS-A and SS-B. Do numbers that are above zero, but not "positive" have any predictive value? It's not like I want to have Sjogren's (or some related disorder like lupus)... I just wonder what else seems "normal" for me, but is not really normal I also wonder if having another baby would put me and/or the baby at risk... lupus anticoagulant (SS-B antibody) is a known risk factor for miscarriage. Pregnancy seems to have been the trigger for most of my autoimmune problems.

Hi Mother of Jibril,

I guess I'm answering your question a bit late, but from www.sjogrens.org, 30% of those with proven Sjogren's Syndrome test negative for SS-A and 60% test negative for SS-B. Also, 30-40% test negative for RF.

So, yes, you can certainly have Sjogren's and have negative bloodwork, just like celiac disease. I have RA (diagnosed via X-Ray) but I test negative for the antibodies....same sort of thing.

I too am starting to believe I have Sjogren's. I'm having terrible problems with dry mouth/dry eyes, and I know that Sjogren's is frequently associated with RA and with autoimmune hepatitis, both of which I have.

There are other tests for Sjogren's: an opthamologist can test for dry eyes and there are various saliva tests too.

Best of luck with everything!!

JoAnn

[Jestgar]

  nasalady said:

So, yes, you can certainly have Sjogren's and have negative bloodwork, just like celiac disease. I have RA (diagnosed via X-Ray) but I test negative for the antibodies....same sort of thing

Nasalady,

I'm curious how they/you decided it was RA, as opposed to all the other arthropathies?

[nasalady]

  Jestgar said:

Nasalady,

I'm curious how they/you decided it was RA, as opposed to all the other arthropathies?

My rheumatologist said he decided that it was RA because of elevated levels of an inflammation marker in my bloodwork (can't remember exactly which one), plus my extensive family history of RA (father, aunts, cousins, sister, etc.). I asked him why I tested negative for the antibodies, and he said that at least 15% of those with RA test negative....he also stated that he expected low levels of antibodies since I was (and am) on immunosuppressants for autoimmune hepatitis.

[Jestgar]

Thanks.

I have arthritic issues myself, and am negative for everything. I'm not really interested in getting a label at this point, since I wouldn't pursue any treatment, but I'm all for getting info for later on down the road.

[nasalady]

  Jestgar said:

Thanks.

I have arthritic issues myself, and am negative for everything. I'm not really interested in getting a label at this point, since I wouldn't pursue any treatment, but I'm all for getting info for later on down the road.

Yes, I know what you mean about labels....I'm starting to realize what a liability it is to have all of these official diagnoses now. I'll be in big trouble if I ever have to switch to a different health insurance.

[Jestgar]

  nasalady said:

Yes, I know what you mean about labels....I'm starting to realize what a liability it is to have all of these official diagnoses now. I'll be in big trouble if I ever have to switch to a different health insurance.

I kinda try to diagnose myself, then do online research to see what the treatments are. For example - I have some sjogren-like symptoms, but there isn't really any treatment for it (unless it attacks your organs) so I don't see any point in seeking medical intervention.

Not the best approach to healthcare, perhaps, but I seem to be doing OK so far.

[Mother of Jibril]

The rheumatologist I met with is convinced that my dry eyes are related to allergies, not Sjogren's. Possible... I've started taking antihistamines on a daily basis to see if it helps with the anaphylaxis, and it does seem to be helping my eyes. The true test will be if I can stop using Restasis without a return of the blurry vision and painful, bloodshot eyes. That would be nice! I can buy a six-month supply of generic Zyrtec at Target for 25 dollars. Restasis is 40 dollars a month with insurance and more than 200 dollars a month without it. Yikes

I agree that it makes sense to educate yourself about what might happen "down the road." It takes soooooo long to get proper treatment for an autoimmune disorder when you don't know what you're looking for. If only I had known that BOTH of my grandmothers had thyroid disorders...

[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 autoimmune inflammation you are having, sjogrens included...in fact it's one of the few treatments for so many A.I. conditions that some docs give up on pin pointing & just do a round to get all inflammation under control.

lets hope it doesn't come to that!

good luck!

[Gemini]

  Quote

Of course beyond that you would have to see a Rheumatologist who would probably run other blood work to try to pin point exactly what you are dealing with...but it sounds like it's possible some could be from celiac...although I wonder if you are gluten free would you still produce positive ANA???

That seems to be the million dollar question! I am not convinced that once you go gluten-free, EVERYTHING returns to normal. I also show a high protein count in my blood work, which can be an indicator of blood cancer. Off to the hematologist I go, who was one the BEST doctors I have ever had the pleasure to meet, and after some more "in-depth" testing, notably the SPEP blood test, she assured me that nothing really bad was going on and made me promise not to worry about it. She is convinced that it is totally due to having a systemic autoimmune disorder (Celiac) and not all people have normal blood work when diagnosed with celiac disease.....ever. It is such a crap shoot with autoimmune problems and the diagnostic tools that are available are only going to take you so far and then it's guesswork.

On the bright side, my success at being gluten-free has been so overwhelmingly good that I have recently halved my dose of thyroid hormone because I am absorbing so well now, I was slipping into hyper-thyroidism. My doctor even commented that maybe, just maybe, at some point, I may not need to take Levoxyl anymore. For this to happen to someone who is older kind of blew me away. As I was end stage Celiac, I never thought this could happen. It has taken 4 years to get here but I am happy about that, at least. As for the rest of my family, they are such a mess it's pathetic. How deep denial can go......none of them are interested, except my younger sister, in going gluten-free or trying to improve their health. Such a pity.......