I wanted to introduce myself. I am 34 years old and am in the process of being looked at for lupus. I was diagnosed as non-Celiac gluten-intolerance October 2004, and have been gluten free ever since (minus the occasional unintentional ingestion). I had learned my gluten intolerance is an autoimmune disease so I went to my GP to check in and have him run some basic tests on thyroid, arthritis, etc. I didn't expect anything to come up because I have been feeling pretty good, maybe a little tired, and IBS/migraine from any of the several foods my body doesn't seem to tolerate.
Right after my appointment my hands started getting weird sensations. I had previously in my life been diagnosed with Raynaud's phenomenon, which I went through for about 4 years before it just stopped. About that same time I learned of my first food intolerance, nightshade veggies, and quit eating them. I wonder now if this was connected?
After I got my first labs back, everything about my thyroid and everything else (RH factor, sed rate, etc) was normal but I had a high titer 1:320 ANA, with nucleolar pattern. I looked that up and freaked - found it highly correlated with scleroderma, esp. with Raynaud's. My GP referred me to a rheumatologist and I went July 15.
We went over my symptoms - weird feelings plus aches and stiffness in my hands and ankles, fatigue (which I'm sort of used to now, but compared to the normal person I don't have the same energy...), pleurisy-like sensations in my left chest, migraines, former Raynaud's, major IBS, sciatica, mouth sores (he thinks those are related to my gluten problem, I was surprised he'd know about that), and periodic hair loss, not patchy, just 2-3 times a year a bunch comes out in the shower for about a month.
He said he could give me a med for my joint sensations but wanted to wait to see if I had lupus first as it would not work with lupus. So he had a bunch of other labs run and so far I am still waiting on most, though the ANA came back positive again, 1:160, still nucleolar. My sed rate and c-reactive protein were still negative, urine analysis was normal.
I think on paper it does sound like I might have lupus but am waiting for results to come back in. I have another appointment on the 5th of August and hope the rheumy will have some answers. I am not in a bad way but hope I don't have lupus. On the other hand it would explain a lot.
I am wondering if my inflammation seems low-to-non-existent because I take turmeric and fish oil daily already. My hands acted up for about 5 weeks and now have calmed down - not sure if they are having any trouble now. I am still having pleurisy-like issues which are worsening, becomming more frequent, though not any more intense.
Anyway, that's me... I have been enjoying reading your posts and look forward to getting to know you all better, well, if I end up being dx'd with lupus or another connective tissue disease.
At last, another "turmeric taker"! I also take fish oil - but that's a lot more common. Turmeric is a great anti-inflamatory/anti-pain spice, I do believe it has helped me do without pain meds most of the time. I take tylenol or aspirin from time to time, not nearly daily.
We've had others here talk about food intolerances and lupus, which has led me to getting a referral for allergy testing. I already know I'm lactose intolerant (but LOVE cheese, so occassionally put up with it). I wonder about gluten, soy, other beans and corn. Since I'm vegitarian (other than occassional fish - and those fish oil caps!) I rely on soy and beans for protien. I like nuts, but don't eat them quite as often.
I hope your testing continues to provide some results - NAMES can help in and of themselves, can't they? At least you know why, then you can begin to deal with it.
Hugs and welcome --
Thank you for the welcome, HatLady! I started taking turmeric after I took it in a blend supplement and it lowered my cholesterol 40 points. My doc wanted me on a statin, but after that he changed his mind. That was very cool!
My rheumy is East Indian and he said turmeric is very interesting, there is preliminary research that it might not only prevent but also reverse fibrosis in the lungs with scleroderma patients. He said he was very interested in any research that would come out of India because they all eat so much turmeric in their curry.
Anyway, sounds to me like a good supplement for everyone!
So I went to my rheumy on Friday and he says I am not having a lupus flare (most of my tests were negative) and right now has nothing to really offer me but wants me back in three months to re-test my C3 which was barely low. My ANA was still positive, but 1:160, down from 1:320, and he doesn't think much of ANAs. I said, what about my joint aches/stiffness, fatigue, migraines, IBS, chest pains? He said Motrin. Actually, he said that any of the meds he could prescribe me have many potential side effects and until he sees more evidence, he would prefer to hold back on treatment with them. I can see his point and I am not in bad shape but would like to feel more solid answers. I guess it's a waiting game. At least he didn't blow me off entirely and wants to see me back for some more tests.
Oh, the pain and anguish we suffer while on the "diagnosis" merry-go-round. We are either told to wait until we get sicker before we can start treatment or we are told to start treatment now and suffer side-effects just in case it is Lupus! :cry:
I wish you the best of luck, keep us informed of how you are progressing
Peace and Blessings
My ANA's go up and down as well. I've found that when they're low, I often feel like (ahem) CRAP, and when they're a bit higher I feel fine. Weird.
My doc has decided that it is lupus, so put me on plaquenil. I feel it made a HUGE difference, and now in addition to the turmeric will take tylenol arthritis or aspirin from time to time.
Hugs and keep your chin up - we're in this together!
Thanks Hatlady and SaySusie... I get to see my regular doc next week so I'll grill him as much as I can about this whole process... hopefully he'll be helpful.