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Sjogren's

june27

By june27
in Related Issues & Disorders

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Gemini Experienced
Gemini
Posted

Test results:

ANA - positive

SSA, SSB, rheumatoid factor, and ESR all negative.

I have an appointment with rheumatologist in February.

I also talked to my naturopathic doctor - she has some other natural remedies to try to help with the inflammation as well. So, we'll see what happens next.. I will bring up the additional food allergies as well. We did do a IgG panel before this whole process started, and I have been avoiding all of the ones that came back high. But might be worth revisiting...

Thanks!

Well...that's interesting! I hope you still try the Restasis, even though your antibodies are negative. You may want to be tested again down the road to see if things have changed.

ANA can be elevated from Celiac so that might be the cause.

So you found a Rheumatologist?

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june27 Apprentice
june27
Posted
  • Author

Well, my primary care referred me to someone. Someone I know told me about another one nearby, but since I have HMO, insurance won't cover him. So, we'll see how this guy is :)

I have been on the Restasis for a few weeks now. No real notable difference yet (not sure how long it takes to work). My eyes still have a fair amount of inflammation and are dry - though not sure which is the chicken/egg in this scenario.

Gemini Experienced
Gemini
Posted

Well, my primary care referred me to someone. Someone I know told me about another one nearby, but since I have HMO, insurance won't cover him. So, we'll see how this guy is :)

I have been on the Restasis for a few weeks now. No real notable difference yet (not sure how long it takes to work). My eyes still have a fair amount of inflammation and are dry - though not sure which is the chicken/egg in this scenario.

Restasis needs a bit of time to kick in and work. It is used to suppress inflammation and we all know that can take longer than we like. I think it was at least 6 weeks before I noticed any difference but it usually takes a while and then you start to notice that your eyes feel better....it's not a hugely dramatic thing like going gluten-free and having the Big D stop! ;) Some people see no difference but others do. It's one of those things you have to try for awhile to see if it makes any difference.

Good luck with the Rheumy crapshoot! I always go in with some hope that this doctor will be different but I am usually disappointed. If you find a keeper, please let me know in case I need one down the road. I hate going in blind. :o Good luck with everything!

  • 3 weeks later...
Laenie Newbie
Laenie
Posted

I have a question regarding dry eyes, but will start with some background info...

I was diagnosed with Celiac in February after starting to see a Naturopathic Dr for signs of inflammation. I have suffered with seasonal allergies for at least 25 years, taking prescription drugs for them for almost 20 years, and getting allergy shots for the past 6 years - and still had allergy symptoms worse than most people (both in severity, and in duration). In the past 5-10 years, I have been having cornea erosions (which are the most painful thing I have ever endured). When I get them (even a small one), I am out of work for a full week. The cornea erosions have really changed my life - I will go to extreme measures to prevent getting anther one. Once it starts getting cold in the fall, I need to have a humidifier going in my bedroom (and bring one along if I travel anywhere). I use ointment in my eyes every night before going to sleep. I use Systane drops in my eyes frequently at work when the air gets dry. At one point, my eye doctor commented that some of the erosions seemed to be caused by inflammation in my eyes (during allergy season), and that if we could get that under control, we might be able to control the erosions as well. This inspired me to see if Naturopathic medicine might be able to help me since it seemed that my problems were systemic. The Naturopathic Dr is the one that made the Celiac diagnosis.

I have been gluten/dairy free since February and have noticed a big improvement in my allergies (though they are not completely gone yet). I am hoping that next year will be even better, since I will have had more time to heal. It is starting to get colder/drier, and I have noticed that my eyes have been really irritated lately. I was hoping that maybe I would not need the humidifier any more, but I was wrong. Last night I put the humidifier on, and my eyes are much happier today.

So, my question is about Sjogren's...

I have heard that there is a connection with Celiac and Sjogren's and have been wondering if there is a possibility that I have Sjogren's as well. When I asked my eye doctor, he said he didn't think the dryness was severe enough to be Sjogren's. When he told me this, I believed it. But, now that my eyes are as dry as ever, I am starting to wonder again. I know that it is possible that my body is probably still healing from the damage of Celiac, but I am curious what other people with Sjogren's have experienced, and if it is worth pursuing getting tested. I don't really know much about Sjogren's - I first saw it when I was researching the recurrent cornea erosions. When I was diagnosed with Celiac, I saw it again on the list of 'companion auto-immune diseases"...

Hi, I have Sjogren's and have a gluten intolerance, I also have many allergies and about 10 years ago (before either diagnosis) began have dry eyes along with bouts of dehydration. It took 8 years to diagnosis the Sjogren's and another year for the gluten-intolerance. I tried Restasis with some relief but after both diagnosis my eye doctor prescribed an allergy eye drop that really helps! I put in 2 drops each eye every evening and in the morning I can open my eyes easily, and I have begun wearing contacts again! Just an idea if you want to ask your eye doctor. laenie

june27 Apprentice
june27
Posted
  • Author

Thanks Laenie - I have been using Lotemax for over 2 years now. It is a steroid drop for allergies - he chose that one over some others because it can be used long term. However, I do have to go in every 6 months or so to make sure the pressure in my eyes is ok (a side-effect of this drop). When he gave me the Restasis, he was concerned that it might not do the trick when my allergies kick in - so I suspect I might be on a combination of drops for a while until I can get things under control. The Lotemax definitely helps, but by itself it just wasn't doing the trick :)

My naturopathic doc is having me try some different supplements to try to help so I can get off the steroid prescriptions (eye drops and nasal for allergies). I plan to start after the holidays...

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