Sjogren's

[june27]

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"...

[pricklypear1971]

My eyes have improved greatly going gluten-free. I suffer from dry eyes (and live in the desert). They are MUCH better now, and my allergies are better.

I still have seasonal allergies, and notice my eyes are one of the first symptoms. Both do continuously improve.

I've never had an ophthalmologist suggest corneal erosion, but they have given me drops and suggested collagen plugs. This was Pre dx, and I am overdue for new glasses (I think my vision may have improved, oddly).

You can undergo Sjogren's testing if you are truly wanting to know.

[Gemini]

I have Sjogren's Syndrome and have for years. I will write more later and can give you some information on testing and treatment but it is late and I have to get to bed. I'll post on Monday, during the day.

[Gemini]

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"...

OK....you should be tested for Sjogren's but keep in mind that the antibody testing can be like Celiac testing....you can have Sjogren's and test negative for it. How were you diagnosed with Celiac? Blood work or biopsy or both? Is your mouth dry also? Sjogren's usually involves both the eyes and the mouth, the salivary and lacrimal glands, which produce tears. I have severe dry eye and mouth but I have to admit, it is not as bad as it was when I was first diagnosed with Celiac. It will never go away but after removing gluten, which is the aggravator to the immune system, things have calmed down a bit and I have managed mine as well as can be expected. And yes...Sjogren's occurs commonly with Celiac, along with many other AI diseases. Lucky us, huh?

The testing for Sjogren's is blood work and it's the SS-A and SS-B antibody test. I have never suffered a corneal erosion as I have mine under control and hope to never get to that point. It is probable that you do have Sjogren's because of that and the fact you need the humidifier for eye comfort. If you start to notice things like that, and your allergies seem to bother your eyes a lot, then there could be this underlying issue. Are you light sensitive? That is another problem for people with Sjogren's. I never go anywhere without sunglasses.....Rx sunglasses.

I would suggest that you get a Rx for Restasis eye drops because they help tremendously with the inflammation. You cannot do natural medicine with Sjogren's. You have to take this very seriously because if dry eye gets bad enough, vision can be affected. You have to use them every day, morning and night. I doubt I will ever be able to stop but if it means my eyes don't get really screwed up, so be it. I am not a medication minded person but I value my eyesight.

My allergies have improved but they are still there and most likely will never go away completely. I take nothing but the occasional Benadryl, at night before bed. I did allergy shots and they helped tremendously but no longer take them. You need a rest from them occasionally. My eyes are very much affected by ragweed and mold. They are so dry that allergens just make them go bonkers. They get very red. That doesn't happen as much but it still is a problem from time to time. But the Restasis helps a lot so I would encourage you to use it. Corneal erosion's are no joke and I bet the result would be noticeable.

If you have any other questions, ask away!

[june27]

Thank you both for the responses!

As I read them today, I realize that I was feeling a bit of self-pity as I wrote last night. Overall, my eyes are doing much better than they were a few years ago (before humidifier and nighttime ointment), but I was feeling a bit disappointed that the dryness is back

I was diagnosed with bloodwork. Doctor didn't see any need for biopsy - so I started gluten-free as soon as I could.

I have always felt my allergies in my eyes very strongly, but also suffer with major sinus issues too. Most people here in New England don't have to start taking allergy meds until April or May. I have to start in February, and need to keep taking it until the ground freezes. I take both Zyrtec and Nasonex during this period and Benedryl at night as needed (which I did for the entire spring/early-summer). With the gluten-free/DF diet and this 'cocktail' I am able to keep things under control - symptoms not completely gone, but not too bad. I am also still getting allergy shots (I think I am allergic to basically everything for trees/grasses/weeds except for pine)

I would say that my mouth is probably drier than many folks, but not nearly as bad as I have read it can be with Sjogren's. Before the new diet, I used to drink a fair amount of water with every meal. That seems to have improved with the diet.

I also have eyes sensitive to light, but I always attributed it to my blue eyes.

When I was in my mid-30's, my eyes started to be more problematic. In addition to the normal allergy eyes, I had my first cornea erosion. I was out of work for an entire week, and had to sit with my eyes closed for the first 3 days to avoid the pain of opening/closing my eye. The second one happened sometime within the next year and had similar duration for healing. I stopped wearing contacts. After one episode in December, I remember going to work in January and keeping a diary of eye symptoms - I would mark down when I had issues (which eye, and severity of pain). Typically, the pain would be in one particular location (different on each eye). At that point, having a single beer at night would often make my eyes hurt the next day. Sometimes they would hurt so much when I got home from work, that all I could do was put in some ointment, and lay on the couch with my eyes closed. It was several months before I had a full week with no symptoms.

During one episode, the on-call eye doctor that I called because the pain was unbearable mentioned the term "recurring cornea erosion". Again, I was out for a week before I could look at a computer screen again. Once I was healed up, I started doing research on RCE. I decided to take matters into my own hands, and searched on-line for anything that I could do to make it better. I started using a humidifier at night during the drier months, and eye ointment every night year round. Once I started with this routine, things have gotten much better. The next few episodes happened in spring/summer months where my allergy eyes were unhappy. After one of these episodes, the eye doc put me on steroid drops. I go in for a visit a few times a year because these drops can cause pressure issues - so far things looks good though.

It has probably been about 1.5 years since my last episode, and I am hoping to keep it that way!!

I am curious how important it is to get the Sjogren's test done, or am I just as good to keep managing it the way I am? I would like to have it tested, but I am skeptical that anyone will order it for me. Are there other things that would be monitored if there was a positive diagnosis? Is there anything else I should be on the lookout for?

I will definitely ask the eye doc about the Rx drops that you mentioned. Right now I am using preservative-free vials that they recommended. Some days I go through a few of them...

Sorry for the long response - just so much to get out

[pricklypear1971]

Some people find antihistimines suppress autoimmune responses-not just alletgy responses. It does that for me.

Not to mention steroids suppress AI.

I suggest you get tested for Sjogren's.

[Gemini]

Thank you both for the responses!

As I read them today, I realize that I was feeling a bit of self-pity as I wrote last night. Overall, my eyes are doing much better than they were a few years ago (before humidifier and nighttime ointment), but I was feeling a bit disappointed that the dryness is back

I was diagnosed with bloodwork. Doctor didn't see any need for biopsy - so I started gluten-free as soon as I could.

I have always felt my allergies in my eyes very strongly, but also suffer with major sinus issues too. Most people here in New England don't have to start taking allergy meds until April or May. I have to start in February, and need to keep taking it until the ground freezes. I take both Zyrtec and Nasonex during this period and Benedryl at night as needed (which I did for the entire spring/early-summer). With the gluten-free/DF diet and this 'cocktail' I am able to keep things under control - symptoms not completely gone, but not too bad. I am also still getting allergy shots (I think I am allergic to basically everything for trees/grasses/weeds except for pine)

I would say that my mouth is probably drier than many folks, but not nearly as bad as I have read it can be with Sjogren's. Before the new diet, I used to drink a fair amount of water with every meal. That seems to have improved with the diet.

I also have eyes sensitive to light, but I always attributed it to my blue eyes.

When I was in my mid-30's, my eyes started to be more problematic. In addition to the normal allergy eyes, I had my first cornea erosion. I was out of work for an entire week, and had to sit with my eyes closed for the first 3 days to avoid the pain of opening/closing my eye. The second one happened sometime within the next year and had similar duration for healing. I stopped wearing contacts. After one episode in December, I remember going to work in January and keeping a diary of eye symptoms - I would mark down when I had issues (which eye, and severity of pain). Typically, the pain would be in one particular location (different on each eye). At that point, having a single beer at night would often make my eyes hurt the next day. Sometimes they would hurt so much when I got home from work, that all I could do was put in some ointment, and lay on the couch with my eyes closed. It was several months before I had a full week with no symptoms.

During one episode, the on-call eye doctor that I called because the pain was unbearable mentioned the term "recurring cornea erosion". Again, I was out for a week before I could look at a computer screen again. Once I was healed up, I started doing research on RCE. I decided to take matters into my own hands, and searched on-line for anything that I could do to make it better. I started using a humidifier at night during the drier months, and eye ointment every night year round. Once I started with this routine, things have gotten much better. The next few episodes happened in spring/summer months where my allergy eyes were unhappy. After one of these episodes, the eye doc put me on steroid drops. I go in for a visit a few times a year because these drops can cause pressure issues - so far things looks good though.

It has probably been about 1.5 years since my last episode, and I am hoping to keep it that way!!

I am curious how important it is to get the Sjogren's test done, or am I just as good to keep managing it the way I am? I would like to have it tested, but I am skeptical that anyone will order it for me. Are there other things that would be monitored if there was a positive diagnosis? Is there anything else I should be on the lookout for?

I will definitely ask the eye doc about the Rx drops that you mentioned. Right now I am using preservative-free vials that they recommended. Some days I go through a few of them...

Sorry for the long response - just so much to get out

Good morning, fellow New Englander! I am outside of Boston. Your story is very similar to mine, only I have not had a corneal erosion. I have had pain in my eyes like you describe but I go to an ophthalmologist twice a year and she has never mentioned that. I actually have healthy eyes but they are extremely dry due to Sjogren's.

I would suggest you get tested just so you'll know but it sure sounds like Sjogren's to me. The mouth dryness can be of different severity with each individual. My sister has Sjogren's also and hers is not nearly as bad a mine. However, the fact that you really need a humidifier for eye comfort is telling. I don't use the ointment because I tried it and didn't like putting goo in my eyes. I just use Restasis eye drops and lubricating eye drops during the day, as needed.

I am impressed that you, like myself, take the bull by the horns with the problem. Thee is no difference in treatment for Sjogren's whether you are diagnosed or not. There is no treatment, other than finding the combo that works for you. You will find that with allergies, your eyes will be affected and it can be dramatic. When your eye is that dry, allergens floating around in the air are sure to stick to and bother a dry eye. Most people have enough fluid in their eyeball to wash away junk that floats into the eye but not for those with Sjogren's. You know that yellow crap they out in your eye to dilate it?

Within minutes, with a healthy eye, it washes away but not me. It stays yellow until I apply lubricant eye drops. So, I wait for my eyes to dilate, in the waiting room, looking like a hell hound. Lovely.

I did 12 years of allergy shots and it did help immensely. I only use the occasional Benadyl when I really need it but I can't take any allergy meds as they further dry my eye out and then I am in pain. I have a good eye doctor but I must admit, I am not one to run off to a doctor very often. I find they push too many drugs on people today and if you don't comply, then it gets tense. I am sick of trying to defend my health issues. Meds dry me out....very bad for Sjogren's. I am lucky I do not take much of anything but trying to explain that to these people is annoying. No one without the problem ever will get it. But my eye doctor does not push me into anything....she lets me make my choices because she always says that when people really need the help, they will ask. I find that the eye drops plus drinking a lot of water and staying hydrated helps. I love the rain....my eyes feel so good.

Staying strictly gluten-free will really help but it takes awhile to reap the benefits. Be patient but I would really suggest asking for the test. Keep in mind a negative does not rule the disease out but you seem to have a really good handle on it. My eyes are far more comfortable than they were 6 years ago. Except for when the mold and ragweed start flying.....

Ask about the Restasis too. It has helped so much. Not happy about using a Rx eye drop for the rest of my life but it sure beats abrasions and pain. The difference was that big for me. I hope you have luck with getting tested....it will be interesting to see how that pans out. As you were diagnosed for Celiac via blood work like me, that means you may pop on the antibody test. I have 3 other AI diseases and I am one of those antibody positive people. It always shows in my blood work.

[june27]

Gemini - I am outside of Boston as well. It is nice to finally have someone who understands the pain associated with dry eyes. Most people just don't get it. Thank you so much for listening, and providing very useful info.

When I was first diagnosed with Celiac, I asked my eye doc about Sjogren's - he told me that "my eyes aren't dry enough for it to be that". I have another appointment with him in a couple of weeks, and will definitely ask again. This time I will make sure he understands how much I am doing as prevention so they may not seem that dry to him. Knowing that the diagnosis won't really change much, makes me less concerned about pushing too hard for the test - though I am curious.

I will also ask about the Restasis. I have heard of it, but never asked specifically about it. I have used drops for allergies for so many years, that one more drop won't be a big deal. I really don't like taking meds if I don't need to, but I will go to great lengths to prevent another episode with my eyes.

Knowing that the gluten-free diet might take longer to reap all of the benefits is also good information. I have been working with a Naturopath, and I know the plan was to hopefully get off the allergy meds by the end of the year - I am not certain I am there yet, but we'll see. I am also going to do some reading on Sjogren's - I really don't know much about it. As the old saying goes...knowledge is power.

PricklyPear - I didn't realize that about antihistamines, though I guess it would make sense that it would help autoimmune responses like it does 'vanilla' immune responses. I was hoping to get off my allergy meds at some point, but I will need to make sure I pay attention to how my eyes feel if/when I do.

Thanks so much!

[Gemini]

Gemini - I am outside of Boston as well. It is nice to finally have someone who understands the pain associated with dry eyes. Most people just don't get it. Thank you so much for listening, and providing very useful info.

When I was first diagnosed with Celiac, I asked my eye doc about Sjogren's - he told me that "my eyes aren't dry enough for it to be that". I have another appointment with him in a couple of weeks, and will definitely ask again. This time I will make sure he understands how much I am doing as prevention so they may not seem that dry to him. Knowing that the diagnosis won't really change much, makes me less concerned about pushing too hard for the test - though I am curious.

I will also ask about the Restasis. I have heard of it, but never asked specifically about it. I have used drops for allergies for so many years, that one more drop won't be a big deal. I really don't like taking meds if I don't need to, but I will go to great lengths to prevent another episode with my eyes.

Knowing that the gluten-free diet might take longer to reap all of the benefits is also good information. I have been working with a Naturopath, and I know the plan was to hopefully get off the allergy meds by the end of the year - I am not certain I am there yet, but we'll see. I am also going to do some reading on Sjogren's - I really don't know much about it. As the old saying goes...knowledge is power.

PricklyPear - I didn't realize that about antihistamines, though I guess it would make sense that it would help autoimmune responses like it does 'vanilla' immune responses. I was hoping to get off my allergy meds at some point, but I will need to make sure I pay attention to how my eyes feel if/when I do.

Thanks so much!

This is funny...we are probably very close to each other!

I wanted to add that some meds may interfere with AI testing. Steroids will or anything that suppresses immune response. Doctors will tell you that it doesn't but they are wrong. I know, I do not have MD after my name but if you are testing for an autoimmune disease and are taking meds that may suppress the response.....that's kind of a "DUH" moment, if you ask me. People will get a negative response on testing and you'll never know if it's accurate or not.

The response you got from your eye doc is typical. They ignore symptoms and complaints and tell you your eyes are not dry enough. What the hell does he/she think is causing the corneal erosions? That is typical of dry eye or Sjogren's. I know this is why many people never get diagnosed....they are told their symptoms aren't bad enough. However, you have the right attitude....you are taking care of the symptom end of things to make your eyes better and are probably doing a good job so that's what you would have to do if you were diagnosed with Sjogren's anyway.

If you want to try Restasis, ask your doc and don't take no for an answer. It REALLY made such a HUGE difference with my eyes.

I never want to lose my vision so I use them without complaint.

One last thing....don't get too freaked out when you read up on Sjogren's. It doesn't just affect the eyes but I am not one to buy into fear. I am very positive about outcomes but some doctors can be such downers. Read to educate but don't worry too much. I have not suffered from some of the other problems with Sjogren's and don't worry about it. Good luck!

[cyberprof]

June, I have some suggestions and a question:

Have you had a full eye exam? Some of your symptoms sound like Fuchs Dystrophy, which is a serious eye disease that causes corneal erosion and eventual blindness without treatment. Some opthomologists aren't experienced enough and may miss it. I advise that you don't take chances and have an MD look at your eyes. You should also have the test for Sjogren's and not just have the doc issue opinions without the test. If it is nothing, the prescription Restasis should prevent further injury.

Second, if it is Sjogren's, I've read studies that say daily flax seed oil (or in capsule form - not flax seed meal) can give major relief to some people. It certainly can't hurt as it's a healthy oil.

Hope you get some relief.

[june27]

i have a full eye exam every year. and i see my opthamlologist 2-4 times a year because he needs to monitor the pressure in my eyes when taking these steroid drops. for a while, i was going in more frequently because i was having either erosions, infections, or ulcers.

i have been doing all of my eye issues through my opthamologist, and not my primary care, because i believe that he should know more about things in that area. the problem, is that the eye docs that i have had don't seem to care about finding the root cause. the first doc, was not a cornea specialist opthamologist, and she wasn't much help at all. she treated the current problem, but didn't see to think anything of the fact that i was having so many problems. it was only because i kept asking that i was sent to the cornea guy. when i first saw him, i asked what was likely causing this, and he said that i likely have a genetic issue that causes my cornea to not stay stuck (or something like that). when i was diagnosed with celiac, and asked if maybe i had sjogrens too, and that was causing all of my erosions - he thought that my dryness was not severe enough for sjogrens.

i found a little write-up that i put together in 2010...

first erosion: april 2005

2nd erosion: dec 2007 (this was extremely painful! and it took several months before my eyes didn't hurt on a daily basis. at this time, i started with the humidifier during the colder months, ointment at night year round, fish oil and flaxseed oil daily, drops as needed - for a while every hour)

3rd erosion: march 2010

4th erosion: may 2010 (in different area of eye, and caught before it got really bad). he thought this one was due to bumps on my lower eyelid (due to allergies)

over these years, i have had numberous eye infections as well. it has been better this year though - maybe gluten free is helping

i would love to get to the bottom of the underlying issue, but i am not sure how to go about doing that. i haven't had a big erosion in a while (knock on wood), so in that respect it does seem to be better. however, it does not seem normal to have to go through the precautions that i need.

any thoughts on how to get my eye doctor to listen? do i need to find a new one?

[Gemini]

Hi June27......I am on my third ophthamologist and I like her very much but I ditched 2 prior ones who weren't listening to me. The first refused to let me try Restasis because she "knew" that it would not help me. She could tell by just looking at my eyes. What kind of BS is that? The Restasis has been the only thing that has helped improve my eyes, along with the gluten-free diet. I do not even go there with any doctor because they just don't understand that eating gluten-free when you have a gluten problem will help ALL associated AI problems. That has been my experience but it's doubtful they will ever understand that.

The other tip I will give you is that people with Sjogren's all have differing levels of dryness. My sister also has been diagnosed with Sjogren's yet she does not use Restasis because she says she doesn't need to. She just doesn't have the extreme symptoms I have yet she has Sjogren's. You will have to grab the bull by the horns and DEMAND to be tested for it because of these serious eye problems you have had. I would look into Sjogren's and the other eye problem that was mentioned....Fuchs Dystrophy. I have never heard of it but it's worth looking into.

I may be in the minority here but I manage my own AI problems and push doctors to give me what I want. They do a less than exemplary job of it and I have seen enough doctors to make that judgement. You know what? I go when I need to and stay away otherwise because I am sick and tired of getting the runaround. My latest eye doctor I like...she has helped and listened the best of all. There isn't much you can do for Sjogren's except go gluten-free and use the hydrating eye drops and Restasis. I can give you the name of the doctor I see as you are close to Boston so could try her, if you like. She is at Emerson Hospital in Concord and her name is Dr. Mandy Kunen. She is like all eye doctors out there...they are busy and you end up waiting too long to see her but she has been managing things and making sure my eyes don't get too much drier. That's all she can do. But she doesn't harass you into doing things you are unsure of and makes gentle suggestions. She's a good listener too, which is important. I agree...it's very hard to find someone good.

But you have to find out what the underlying problem is and you already have Celiac and Sjogren's is HUGELY linked to Celiac. Don't ever let a doctor tell you that your eyes aren't dry enough for Sjogren's...I heard that also and I did have it!

[june27]

so, i finally got to see my opthamologist. he still thinks that my eyes don't look that bad, but this time he finally understood that i am doing a lot of precautions to make them better.

i asked about sjogren's and this time he seemed to think it was likely that i have it. he expressed concern about the inaccuracies of testing (negative doesn't mean that you don't have it) and also mentioned that the treatment really won't be different with versus without the diagnosis.

i did get one last piece of info from (not sure why he didn't think to mention this before). the last two episodes were actually ulcers (and there were different than the first two that i thought were called erosions) and these were very likely autoimmune in nature (other causes of ulcers are infections). when i looked up cornea ulcers online, it looks like RA and lupus were two the AI conditions that can cause them (but i am sure there could be others)

he suggested that i talk to my rheumatologist about further testing.

oh, he also gave me some restasis to try to 6 weeks - then back for another appointment.

so, we'll see what happens...

[Gemini]

so, i finally got to see my opthamologist. he still thinks that my eyes don't look that bad, but this time he finally understood that i am doing a lot of precautions to make them better.

i asked about sjogren's and this time he seemed to think it was likely that i have it. he expressed concern about the inaccuracies of testing (negative doesn't mean that you don't have it) and also mentioned that the treatment really won't be different with versus without the diagnosis.

i did get one last piece of info from (not sure why he didn't think to mention this before). the last two episodes were actually ulcers (and there were different than the first two that i thought were called erosions) and these were very likely autoimmune in nature (other causes of ulcers are infections). when i looked up cornea ulcers online, it looks like RA and lupus were two the AI conditions that can cause them (but i am sure there could be others)

he suggested that i talk to my rheumatologist about further testing.

oh, he also gave me some restasis to try to 6 weeks - then back for another appointment.

so, we'll see what happens...

Hi june27!

What you will find interesting is that RA and lupus have the same strong connection to Celiac that Sjogren's does and Sjogren's is also classified as an arthritis type condition...along with RA. I would think that if RA and lupus are linked to ulcers of the eye, ditto for Sjogren's. Just remember that the AMA's knowledge of AI disorders is limited so they may not even think that you could have an ulcer from Sjogren's because it isn't listed in the book.

As for testing, your doc is correct....a negative does not rule the problem out. That's true of most AI disorders because testing is just not that precise. However, it's a simple blood test so it would be a good idea to have the test run. Why all the fuss about a simple blood test?

I am happy you are trying Restasis because it has worked wonders for me. I am so against taking any meds and that is the one I take because my eyes are sooooooo much better using it and I really hope you find the same. I know how bad dry eye can be. In the year before I had my Celiac diagnosis, I was a mess. My eyes were so dry and light sensitive that I would wear my sunglasses inside because of the damn flourescent lights. They killed me. I kept my eyes shut alot because they hurt so bad from the dryness. Now they are much better from the gluten-free diet (it knocks down inflammation, body-wide, so that helps with inflammation in your problem areas)and using Restasis. Just give it a month, at least, to start working. It can't hurt to give it a whirl.

[GFinDC]

Hi June,

I don't have Sjogrens but I do have allergies. My allergies wer bad before going gluten-free but they have improved a tremendous amount. One thing I wanted to suggest is the possibility of food causing some of the dryness. Food intolerances can result in many varied symptoms. Maybe at some point it would be helpful for you to try an elimination diet for a wwwhile to see if any foods are affecting the dryness. Jsut a thought and I don't know if it will help. But with food reactions being so varied it is hard to tell without trying.

[Gemini]

June27.....I am sitting here reading the Autumn 2012 edition of the Journal of Gluten Sensitivity, which is published quarterly by Celiac.com and there is an article on the association between Sjogren's and Celiac. What jumped off the page at me?

This statement.....complications of Sjogren's include tooth decay and corneal ulcers. So.......it looks like another piece of the puzzle is coming to light for you. Maybe you should take a copy of the article to your doctor to further educate them. This should convince them that you need the blood work!

[cyberprof]

June27.....I am sitting here reading the Autumn 2012 edition of the Journal of Gluten Sensitivity, which is published quarterly by Celiac.com and there is an article on the association between Sjogren's and Celiac. What jumped off the page at me?

This statement.....complications of Sjogren's include tooth decay and corneal ulcers. So.......it looks like another piece of the puzzle is coming to light for you. Maybe you should take a copy of the article to your doctor to further educate them. This should convince them that you need the blood work!

Wow, good catch Gemini!

[Gemini]

Wow, good catch Gemini!

Anything having to do with Sjogren's always catches my little dry eyes!

Actually, you have no idea how many times this has happened throughout my life. When I was diagnosed with Celiac, the first food shopping trip after dx, I was wandering around the store trying to figure out what was safe to eat and I nearly ran my cart into a new display that Whole Foods had. The display was for their new Gluten Free bakehouse items. They had just started it up and had products in the store to sell. I looked up and saw my first ever loaf of gluten free bread. That's when I thought this whole thing might not be as bad as everyonbe else seemed to think it was.

It's strange, though.....many times when I have had problems or been seeking answers, they have come to me in strange ways. I will see an article in a magazine I ordinarily never read...the answers or information just seem to appear out of nowhere, sent to me at the right time. I think it's the little guardian angels at work!

[Gemini]

Here's another article that mentions corneal ulcers with Sjogren's Syndrome....Open Original Shared Link. It is from the Lupus Foundation so the source is a good one. Scroll down and read the info under Sjoigren's Syndrome.

[june27]

Gemini - thanks for all of the great info!! I am just returning from a weekend in warm Orlando (and was quite disappointed to return to 30-something degree weather at the airport. To make matters worse, I couldn't for the life of me remember where I had parked, so they had to have someone drive me around to locate my car - how embarrassing!!).

Once I get myself some dinner, I am going to settle in and read those articles...

[Gemini]

Gemini - thanks for all of the great info!! I am just returning from a weekend in warm Orlando (and was quite disappointed to return to 30-something degree weather at the airport. To make matters worse, I couldn't for the life of me remember where I had parked, so they had to have someone drive me around to locate my car - how embarrassing!!).

Once I get myself some dinner, I am going to settle in and read those articles...

You should have told them you are suffering from brain fog because of Celiac Disease and that's why you couldn't find your car.....watch their eye balls spin!

Logan is tough for parking so I usually take the Logan Express in. Airport parking is scary....

[june27]

thanks again for all of the info - i will make sure i am armed before my next doc appt

i wish i could blame it on the celiac. unfortunately, i think it was just too early when i got to the manchester airport (i had a 7am flight when i left), and just not awake enough to pay attention to where i parked. first (and hopefully last) time for that.

[june27]

I figured I'd post an update...

I finally made an appt with my primary care doc to ask about a referral to a rheumatologist. I was prepared to fight for this, expecting her to push back (the eye doc has not been very proactive on this front). She was awesome, and all of my worrying was for nothing. She suggested Sjogren's before I had a chance to, and she asked about other symptoms that I might have indicating Lupus, RA, Reynaud's, etc. Then she had my blood drawn today to test for SSA, SSB, ANA, and two others (I think one might be for RA, and the other for general inflammation). If anything comes back positive, she will send me to rheumatologist.

So, hopefully I will have some information (and ultimately answers) soon...

I guess I have been asking the wrong doc for help all of these years. I thought that the eye doc was the right channel to go through for eye issues, but it turns on my primary care is much better!! I need to remember this for the future!

Thanks for all of the support!

[Gemini]

I figured I'd post an update...

I finally made an appt with my primary care doc to ask about a referral to a rheumatologist. I was prepared to fight for this, expecting her to push back (the eye doc has not been very proactive on this front). She was awesome, and all of my worrying was for nothing. She suggested Sjogren's before I had a chance to, and she asked about other symptoms that I might have indicating Lupus, RA, Reynaud's, etc. Then she had my blood drawn today to test for SSA, SSB, ANA, and two others (I think one might be for RA, and the other for general inflammation). If anything comes back positive, she will send me to rheumatologist.

So, hopefully I will have some information (and ultimately answers) soon...

I guess I have been asking the wrong doc for help all of these years. I thought that the eye doc was the right channel to go through for eye issues, but it turns on my primary care is much better!! I need to remember this for the future!

Thanks for all of the support!

I am so glad you got what you wanted and, it sounds like, a positive experience. That is rare indeed for us. Just remember.....RF (rheumatoid factor) and ANA can be elevated from Sjogren's alone. Mine are and I don't have lupus, although I do not go to a rheumatologist. I have zero symptoms of lupus so no lupus.

Let us know what the outcome is...I am very interested to see what the Sjogren's antibodies show! Good luck!

[june27]

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!