Another newbie with a few questions

[Blue Hydrangea]

I'm a Sjogren's newbie.  I was never big on doctors because I rarely got sick but recently developed what I thought was a gluten intolerance.  So I found a new internist and went to her convinced I had gluten intolerance.  My primary symptoms were skin related as my scalp would break out in blisters when I ate gluten, sometimes terrible stomach pains but there were short lived and usually right after eating.  

She tested me for what I thought was celiac but ended up being other foods and she ran some auto-immune tests.  I ended up finding out I have Sjogren's along with allergies to wheat, corn, eggs, peanuts and pork.  I came back negative for celiac but think it may be from having gone off gluten. I'd only started eating it again for a few weeks so i could get tested and I've heard false negatives can be common in this case.   I also came back with low Vitamin D (it was 9.1) which she thoug was from my intestines not absorbing it because of the food intolerances having damaged my intestines.

Last week I ate some mixed nuts (very careful to be sure there were no peanuts)and one side of my face broken out in a terrible rash.  Happened to be two days before I went to my doctor.  She said it looked like shingles but there was no nerve pain (actually no pain at all)and it went away in a few days.  I love this doctor and am so happy she diagnosed all this for me after my first visit.  

However, I think she really downplayed the Sjogren's and is focsed more concerned on the food allergies(probably because that's been my biggest struggle).  She just happened to mention(almost in passing)that  I tested positive for Sjogren's which she explained as dry eyes and dry mouth.  I don't think I have either of these, though I do have very dry nasal passages.  I also have a reaction in my parotid gland when I eat the wrong things(sometimes it happens when I've eaten nothing) and it gets very swollen and itches like crazy.  It will stay swollen for a few days then goes back to normal until the next time.(I've had this for the last 8 or 9 years so if it's a result of Sjogren's then I've had it for a while).

I also have the fatigue I've seen mentioned here.  Not every day but when it hits me it's as if I cannot take another step or move another muscle.  Hard to describe unless you've experienced it because it's completely overwhelming.  I never even mentioned these to her because I'd been to doctors before about the parotid and they said nothing was wrong and to just suck on lemon drops and I've always thought the fatigue was a result of menopause so had learned to live with it.

I was wondering if someone could answer a few questions for me.  


1) I'm still in denial and not convinced I have this.  Is it possible to test positive and have it be a false positive?  I just turned 60 last year and I never had a health problem my life.  Nor did I ever have a food allergy.  Now I find out I'm allergic to everything (at least it seems like that to me)PLUS I have Sjogren's.  I'm struggling to believe this is happening and though I know better a part of me wants to believe it will all get better and everything will be fine.  
2)I was dianosed Positive ANA, SS-A positive with a result of 2.2.  SS-B Negative.  Is 2.2 high or low on the spectrum of Sjogren's.  Are there degrees of Sjogren's or a range of values?  This sort of ties back to the prior question thinking maybe I have a very mild case if that's possible.  
3)Should I be seeing a rheumatologist?  Though I'm very impressed that my internist figured all this out from one visit and knew what blood tests to run AND ran the autoimmune test,  I wonder if I should be managed by a rheumatologist.  I don't think I need any drugs rightnow but I want to be sure someone who really understands this is part of my care.  Or am i just being paranoid?

I'm glad I found this group and feel like I shouldn't be worrying about anything because there are so many people here having a much more difficult time with this than I am. It's hard not to worry though when it's happening to you if that makes sense.  Right now I just need advice and people to talk to but hope to return to others as I become more educated on this.

Thank you!!

Thanks very much!

[Debby]

Hi there! I just got diagnosed last week and feel the same way that you do. My Dr. also went over as if it was nothing. I went in for my hashimotos which was making my thyroid run high. I happened to mention the dry eyes hoping he could rec a good eye drop. I too experience days every now and then where I am so exhausted. Just thought it was part of my thyroid issues. I did make an appt next week with a rheumatologist because I want to meet with someone who specializes in this area. Good luck with everything!

[Pisces24]

I wish I had more answers for you. I only know a bit from my own experience. It took me 6 years to get diagnosed. I had the royal runaround with specialists and finally got diagnosed at a research/teaching hospital here in Iowa. I understand your anxiety. I heard everything from "we think it is some type of cancer" to "you probably go something from your cat" and I didn't have a cat then!   

I tested VERY High for ANA, SS-A and SS-B so I definitely have Sjogrens. However at this time (knock wood) I don't have the very troublesome symptoms that many others on the board do. My main thing so far has been teeth cavities that I am nigh on hopelss to resolve - short of not eating.  I have dry mouth, dry lips and dry sinuses. I've been using the NettiPot which has really really cut down on the severity and # of sinus/throat infections I was getting and also use a humidifier at home.  I have some fatigue but I can usually feel it coming on.  I also have delveloped some spots on my lungs that come and go though I have no breathing problems. So I am being monitored by a pulmonologist, rheumenologist and immunologist. I am on NO medications for Sjogrens either. You will find that everyone is different in # and severity of symptoms.

Once you have the Sjogrens accepted in your mind, you can better get long with your life. Just remember that Sjogrens is a "part" of you - NOT the Whole of you. Don't let an illness or disease define totally who you are.
Good Luck