Eye Troubles

[BRS-07]

So I've been gluten free for about 7 weeks. I've been dealing with my actual eyes being overly dry for about two years, but about 10 weeks ago my eyelids and the inner part of the bottom of my eye have been really really dry and occasionally itch. I have a tendency to rub my eyes alot when I get tired and the more I mess with my eyes the more scaley they look. I wash my face everyday and any liquid touching my eyes, no matter contact solution of water, stings. I talked to my doctor and he said my vitamin A deficiency could cause it, but I have not heard of vitamin A causing skin problems around the eye and he just shrugged it off. I have also just switched my eye makeup to the bare minerals brand to see if makeup was the problem, but nothing has changed. Does anyone else have any eye issues or know what this could possibly be caused from?

[GFinDC]

I think this could be related to a condition call sjogren's. You might try a search on it and see what turns up on the board. Quite a few posters seems to have it or symptoms like dryness.

[flourgirl]

Does sound like it could be Sjogrens to me. Look it up and see what you think. There are tests for it, but the down side is that there is no "cure". It is another immune system disorder....they seem to travel in "packs", so to speak. You could use eye drops for relief. I do. I carry them with me everywhere. Hope this helps

[BRS-07]

Wow I've never heard of that before, but I'm definently going to make an appointment to talk to my doctor and get tested. My doctors have shrugged off my dry eyes and my eye doctor has had me on Restasis for over a year already but just said some people live with dry eyes. Thank you both for your help.

[mamaw]

Here are two other things to look for as well: rosacea ( it can make scaly crusts) & a rare disease Dysthyroid Obitopathy...... this can be accompanied before a thyroid issue or after a thyroid issue or neither......

hth

mamaw

[Jestgar]

Wow I've never heard of that before, but I'm definently going to make an appointment to talk to my doctor and get tested. My doctors have shrugged off my dry eyes and my eye doctor has had me on Restasis for over a year already but just said some people live with dry eyes. Thank you both for your help.

There is no treatment for Sjogren's. The symptoms it causes are treated (like, Restasis for dry eyes). How will have a label benefit you?

[AWonderTree]

Do you have any eye inflammation?

I'm allergic to dust mites, and the only symptom I notice from it is eye inflammation.

[BRS-07]

Do you have any eye inflammation?

I'm allergic to dust mites, and the only symptom I notice from it is eye inflammation.

I don't really have inflammation. It's just chronic dry eyes and all around my eye seems to be really dry, scaley almost, itchy, and depending on the day it may burn when any type of liquid touches the eye area. I've been paying really close attention to everything that touches my eyes to mark out any types of reactions from products, but it doesn't seem to be an allergic reaction that I can pinpoint at least. Plus the problem around my eye is fairly new, about 2 - 3 months I think.

[BRS-07]

There is no treatment for Sjogren's. The symptoms it causes are treated (like, Restasis for dry eyes). How will have a label benefit you?

It's not that I'm looking for a label, cause I really don't want anything else to go along with celiac. I'm trying to pinpoint what could possibly be causing the breakout around my eyes. It has been getting worse, so I figure anything I can ask the doctor about to get to the bottom of this problem would be helpful. I'm not going to assume I have anything till I know for sure, especially since that is how little problems sometimes become bigger ones because self diagnosis can be wrong.

[Gemini]

So I've been gluten free for about 7 weeks. I've been dealing with my actual eyes being overly dry for about two years, but about 10 weeks ago my eyelids and the inner part of the bottom of my eye have been really really dry and occasionally itch. I have a tendency to rub my eyes alot when I get tired and the more I mess with my eyes the more scaley they look. I wash my face everyday and any liquid touching my eyes, no matter contact solution of water, stings. I talked to my doctor and he said my vitamin A deficiency could cause it, but I have not heard of vitamin A causing skin problems around the eye and he just shrugged it off. I have also just switched my eye makeup to the bare minerals brand to see if makeup was the problem, but nothing has changed. Does anyone else have any eye issues or know what this could possibly be caused from?

I have Sjogren's Syndrome and my eyes got pretty bad before I started on the Restasis eye drops. They make a huge difference for many people. Fish oil is also good to take and is most potent when you get it from it's natural food source, but the caps are good too.

The tests you would want to request are the SS-A and SS-B antibody tests. However, some people, even with full blown Sjogren's, may test negative on the blood work. I am one of those people who test positive, like clockwork, on all my antibody tests so answers are easy for me. Not always welcome, but easy!

Use warm compresses on your eyes at night so ease the symptoms and also use OTC eye drops to lubricate during the day. If you have seasonal allergies or are allergic to mold or dust mites, this will aggravate the condition. I have bad allergies but the only symptoms I get are with my eyes. Not too much congestion of the sinuses or chest but my eyes pay the full price during allergy season. It can be controlled once you learn your triggers.

I would advise seeing an ophthalmologist for this as Sjogren's can really mess your eyes up. If they become too dry, it can affect your vision. I go yearly and am glad I do.....one of the few doctors I've had luck with. She also does not push other dry eye treatments on people if she feels they will not benefit or the side effects might be really bothersome. It's important to take good care of your eyes.

Don't worry about the make-up. I wear eye make-up and it has absolutely no effect one way or another on my Sjogren's. What does is how I treat the problem. You may have outbreaks of scaliness or redness and irritation but overall, it can brought under control so you'll be more comfortable.

Good luck to you!

[BRS-07]

I have Sjogren's Syndrome and my eyes got pretty bad before I started on the Restasis eye drops. They make a huge difference for many people. Fish oil is also good to take and is most potent when you get it from it's natural food source, but the caps are good too.

The tests you would want to request are the SS-A and SS-B antibody tests. However, some people, even with full blown Sjogren's, may test negative on the blood work. I am one of those people who test positive, like clockwork, on all my antibody tests so answers are easy for me. Not always welcome, but easy!

Use warm compresses on your eyes at night so ease the symptoms and also use OTC eye drops to lubricate during the day. If you have seasonal allergies or are allergic to mold or dust mites, this will aggravate the condition. I have bad allergies but the only symptoms I get are with my eyes. Not too much congestion of the sinuses or chest but my eyes pay the full price during allergy season. It can be controlled once you learn your triggers.

I would advise seeing an ophthalmologist for this as Sjogren's can really mess your eyes up. If they become too dry, it can affect your vision. I go yearly and am glad I do.....one of the few doctors I've had luck with. She also does not push other dry eye treatments on people if she feels they will not benefit or the side effects might be really bothersome. It's important to take good care of your eyes.

Don't worry about the make-up. I wear eye make-up and it has absolutely no effect one way or another on my Sjogren's. What does is how I treat the problem. You may have outbreaks of scaliness or redness and irritation but overall, it can brought under control so you'll be more comfortable.

Good luck to you!

Thanks for the information. Can eye troubles be the only symptom for Sjogren's, or does the dry mouth and swollen glands accompany the dry eyes? I'm asking cause my eyes seem to be the only thing bothering me, could I still have Sjogren's or would that mark it out?

[Gemini]

Thanks for the information. Can eye troubles be the only symptom for Sjogren's, or does the dry mouth and swollen glands accompany the dry eyes? I'm asking cause my eyes seem to be the only thing bothering me, could I still have Sjogren's or would that mark it out?

Typically, dry mouth and swollen lymph nodes are coupled with the dry eyes in Sjogren's but I never had the swollen lymph glands. I have severe dry mouth and eyes but none of the other. I personally think it's because I take baths instead of showers and use a wash cloth to massage my neck area, like a person would in Shiat'zu massage. This is a common technique used in Chinese medicine to drain the lymph system and keep it moving. My niece, on the other hand, who also has Sjogren's as badly as I do, blows up like the Hindenburg around her face area but she is not being good about her health. Very bad habits and a refusal to believe she has celiac disease so her symptoms are out of control. Drinking a lot of water and good fluids helps very much also.

I think that there are people who don't have ALL of the typical symptoms but maybe a few. Same as celiac disease and I just think it's the quirky nature of autoimmune disease. You may want to have the blood work done anyway to see what comes up. Just remember you could have Sjogren's, even though the blood work may be negative. I also noticed that eye doctor's seem to know anyway if you have it or not. When an eye specialist looks into your eyes and says.... "Your eyes are SO VERY DRY!", it did not inspire a warm, fuzzy feeling in me!

[cyberprof]

I have a lot of the Sjogrens symptoms but my eyes and mouth have gotten so much better recently.

Try flax seed oil (capsules or liquid). My eye doctor told me to take the dose listed on the bottle for six weeks, and that'd I'd see a difference. Fish oil, he said, wasn't as useful for eyes. He also said six weeks on and then four-six weeks off, so I do that and when I'm not taking the flax oil I take fish oil.

I tried it and it worked.

I recently stopped using Zyrtec and generic Zyrtec for my allergies and went back to the Claritin I'd used for years. That has made so much of a difference. Of course, I knew that antihistamines could cause dry eyes and mouth but since I've been on them for 30 years, I didn't realize that changing from Claritin to Zyrtec could make a difference but it did. The long-winded point I'm trying to make is that you might ask your doc if other meds you're taking could be the problem. Or maybe it is allergies that is doing it. You could be allergic to the moisturizer that you use, for example.

Best of luck.

~Laura

[Gemini]

I have a lot of the Sjogrens symptoms but my eyes and mouth have gotten so much better recently.

Try flax seed oil (capsules or liquid). My eye doctor told me to take the dose listed on the bottle for six weeks, and that'd I'd see a difference. Fish oil, he said, wasn't as useful for eyes. He also said six weeks on and then four-six weeks off, so I do that and when I'm not taking the flax oil I take fish oil.

I tried it and it worked.

You know, that's interesting you should say that about the flax seed oil. Another eye doctor I used to go to said the same thing regarding flax seed vs. fish oil and after doing a trial run, I didn't notice any difference whatsoever between the fish oil and the flax seed oil. Both seemed to help as much as the other. I know they are metabolized differently but maybe not the case with me.

The best thing I have done is use Restasis. If you have true Sjogren's, it will help out tremendously.

It's the first medication that actually helps with the more profound symptoms. I hate using meds but if it's a choice between that and possibly losing my eyesight due to complications, I will take the meds.

Staying on a strict gluten-free diet has been an amazing help also. It really does make a difference!

[Yellow Rose]

Could be Chronic Blepharitis. It is a mild eye irritation. Characterized by slight redness, itching and burning, and small, white crusts that form at the base of the lashes. It is caused by excessive oily secretions on the eyelid margins and may be worsened by bacteria around the roots of the eyelashes. It is not contagious or painful.

To control clean the eyelid margins in the morning and at bedtime with moist washcloth or a Qtip moistened with warm tap water diluted with baby shampoo. Then apply a very warm moist washcloth to the eyelid for 5 minutes and then massage the eyelids. After several days of treatment the eyelids may become more red and swollen this will gradually diminish. Symptoms will be helped by using Preservative Free Artificial tears as needed

After the second week of treatment there should be marked improvement. Continue the treatment for 3-4 weeks and keep using the hot soaks as a routine part of face washing. Treatment requires persistence and must be done over a period of months or more. If symptoms return resume using the scrubs and compresses again until gone This info comes from the San Antonio Eye Center.

[Yellow Rose]

Could be Chronic Blepharitis. It is a mild eye irritation. Characterized by slight redness, itching and burning, and small, white crusts that form at the base of the lashes. It is caused by excessive oily secretions on the eyelid margins and may be worsened by bacteria around the roots of the eyelashes. It is not contagious or painful.

To control clean the eyelid margins in the morning and at bedtime with moist washcloth or a Qtip moistened with warm tap water diluted with baby shampoo. Then apply a very warm moist washcloth to the eyelid for 5 minutes and then massage the eyelids. After several days of treatment the eyelids may become more red and swollen this will gradually diminish. Symptoms will be helped by using Preservative Free Artificial tears as needed

After the second week of treatment there should be marked improvement. Continue the treatment for 3-4 weeks and keep using the hot soaks as a routine part of face washing. Treatment requires persistence and must be done over a period of months or more. If symptoms return resume using the scrubs and compresses again until gone This info comes from the San Antonio Eye Center.

[BRS-07]

Thanks for all the replies.

Blepharitis is what I was looking into also since I have no other syptoms for sjogrens. I called my doctor and he said he couldn't do anything and refered me to a dermatologist. Very Frustrating since this whole time he has told me that it was a side effect from being vitamin A deficient. I haven't made an appointment with the dermatologist yet because I won't be able to get in until July. Instead I've been doing the warm compresses and using olive oil on my eyes which makes them moist enough that I can open my eyes all the way! I'm really hoping that it will go away with all the moisturizing from the olive oil, but I plan on making an appointment for the dermatologist if it doesn't. As far as my actual eyes go, I have been using Restasis for almost two years and can't live without it. When I wake up in the morning, my eyes are so dry I can't open them all the way until the drops are in them. As for night time, if I stay up past my normal time, or put the drops in earlier than getting in bed, my eyes start to get hard to blink, dry and achey because the moisture is no longer there. The restasis is a life saver, but not a cure for sure.

[Gemini]

Thanks for all the replies.

Blepharitis is what I was looking into also since I have no other syptoms for sjogrens. I called my doctor and he said he couldn't do anything and refered me to a dermatologist. Very Frustrating since this whole time he has told me that it was a side effect from being vitamin A deficient. I haven't made an appointment with the dermatologist yet because I won't be able to get in until July. Instead I've been doing the warm compresses and using olive oil on my eyes which makes them moist enough that I can open my eyes all the way! I'm really hoping that it will go away with all the moisturizing from the olive oil, but I plan on making an appointment for the dermatologist if it doesn't. As far as my actual eyes go, I have been using Restasis for almost two years and can't live without it. When I wake up in the morning, my eyes are so dry I can't open them all the way until the drops are in them. As for night time, if I stay up past my normal time, or put the drops in earlier than getting in bed, my eyes start to get hard to blink, dry and achey because the moisture is no longer there. The restasis is a life saver, but not a cure for sure.

If your eyes are that dry, then it's almost a slam dunk for Sjogren's. It is never normal to have eyes that dry and just having blepharitis would not cause that much dryness. Blepharitis is most often linked with allergies. I would also recommend that you see an ophthamologist instead of a dermatologist. Dermatologists, from my own personal experience, are there to diagnose skin cancer and are not much help with anything else. If you have a problem around or in your eyes, you should see an eye doctor. I never got help with anything or found anyone who knew what they were talking about until I saw an ophthamologist.

Unless you are 70 years or older or have Sjogren's, dry eyes should not be a problem. Noticing that much of a difference using Restasis means you have inflammation in your eyes, which Restasis really helps. I agree, it's not a cure but a lifesaver and how hard is it to use eye drops anyway? Sjogren's can be hard to diagnose, like Celiac, so don't automatically discount the diagnosis if a doctor tells you that you don't have it. Good luck and I hope you get some relief....I know how painful extreme dry eye can be!

[OptimisticMom42]

Just a thought but have you checked out Celery (and it's plant family)?

I'd never had itchy eye lids until last week when I tried to bring ketchup back into my diet. My eyelids turned purple, itched and burned like crazy. The itching is higher up on the bony area under my eyebrow now and my eyes feel dry. So there was probably celery in the sloppy joe mix I ate a couple nights ago also. Carrots and parsnips (same plant family) now give me blisters on the back of my head. I haven't even thought about parsley and fennel.

I ate tons of carrots and celery before celiacs with no obvious problems but tested positive for allergy a couple months ago.

Celery is a common allergy in Europe according to Wikipedia. The strongest reactions being to celery seed.

While waiting for the Dr.s to do thier thing, you could eliminate the celery family and see what happens.

[BRS-07]

I think I will go ahead and look for an opthamologist (sp?) instead of a dermatologist. I have had one bad experience with a dermatologist being of no help already, so anything to avoid waiting a month just for that again. As far as age goes, I just turned 23. My last eye doctor was surprised and said she had never met someone as young as me on restasis, yet she still didn't have any other comments as to why I have such dry eyes. I agree that I don't think dry eyes is just another unsolved problem, I think that their should be a reason, it is just finding a doctor knowlegable enough to connect the dots.

Also, I am not a celery eater, but I will watch my fruit and vegetable intake in comparison to how my eyes are acting.

Thanks for all the help.

[Gemini]

I think I will go ahead and look for an opthamologist (sp?) instead of a dermatologist. I have had one bad experience with a dermatologist being of no help already, so anything to avoid waiting a month just for that again. As far as age goes, I just turned 23. My last eye doctor was surprised and said she had never met someone as young as me on restasis, yet she still didn't have any other comments as to why I have such dry eyes. I agree that I don't think dry eyes is just another unsolved problem, I think that their should be a reason, it is just finding a doctor knowlegable enough to connect the dots.

Also, I am not a celery eater, but I will watch my fruit and vegetable intake in comparison to how my eyes are acting.

Thanks for all the help.

I would have to agree with you on the dermatologist issue. In my opinion, they are some of the worst doctors on the planet, unless you have skin cancer.

That is what they diagnose best because it's pretty easy. Many people with DH are told they have psoriasis and are given creams and lotions that rarely help much and these doctors NEVER look at a persons diet. My father is sometimes covered with rashes and he was always told it's psoriasis, even though I am a diagnosed Celiac. Annoys me to no end!

At 23 years old, you should NOT have any dry eye problems. The non-Sjogren's dry eye is pretty much a condition of aging and shows up in people over 60.

I just turned 50 so some of my problems may be slightly due to the aging process but I was serum tested for Sjogren's, at my request, and my antibody numbers were pretty high. It's dry eye to the extreme and will cause the problems you are having. One reason you may not be experiencing the dry mouth problem is your age.....you may not have accrued enough damage to get that far and I hope you never do. The immune system attacks the glands which produce saliva in your mouth and tears for your eyes. Do not let any doctor put the diagnosis in a box and tell you that because you only have the dry eye, it couldn't possibly be Sjogren's. I did not have some of the major symptoms of Sjogren's, like gland swelling in the face, but had others. I also did not have diarrhea with my Celiac until the LAST 4 MONTHS before diagnosis but was a poster child in every other way. They blew me off when I said I didn't have the Big D and it took me 20 years to be diagnosed. If I wasn't so intent with healing and getting on with my life, I would sue them for malpractice.

Make sure you stress to any eye doctor that you are Celiac. If any blood work is negative for the antibody, I would repeat it yearly if your symptoms worsen.

Keep using the Restasis because it works well and will keep your eyes from getting dangerously dry. I am glad I saw an ophthamologist because she did a complete eye exam and, although my eyes are extremely dry, they are absent of any other disease which would cause eye sight loss. That's good to know!

[mamaw]

Gemini

what serum test did you do for Sjorgen's?

thanks

mamaw

[Takala]

Definitely sounds like Sjogren's syndrome. Dry eyes, mouth, sticky thick saliva, mucous membranes, lung secretions....

Jestgar, the reason some of us would like to be acknowledged as having this is that it is associated with having other auto immune problems, and the entire syndrome means that it will effect how a patient needs to be treated by a medical doctor.

As an example, I have it, and it is acknowledged by my dentist and eye care practitioner, who can see its results. (going on the gluten free diet really helped knock back the eye symptoms and I don't need daily eye drops now ! ) But it can also be associated with iritis, an inflammation of a flare auto immune reaction of the eye which is a medical emergency requiring steroid eye drops.

This is something that eye care professionals and regular doctors should all be aware of, so they know to warn their patients to be watchful for symptoms.

I also cannot wear contact lenses and need sunglasses outside just to protect my super dry, sensitive eyes from wind and blowing dust and debris.

It is also associated with the auto immune seronegative spondylarthropy type arthritis syndromes, in fact, it is a hallmark symptom. Yet I was told by some dingbat "rheumatologist" that I could not have arthritis nor Sjogren's, because my blood test did not show the antibodies. This in spite of my mouth, my eyes, my other health care professionals concurring, and my arthritis being OFFICIALLY diagnosed on the basis of this and x rays and obvious inflammation 20+ years earlier.

Where it can become a problem is that it also effects how your body handles a viral infection that gets into your lungs, because it's then harder to clear a chest cold. If you take an antihistamine at the wrong time you can make it even harder to clear mucous because this dries you out further. If you take one brand of antihistamine over another, you can make this problem even worse. Before claritin went to over the counter status, I had to get into battles with HMO doctors to proscribe what brand of antihistamine which would do me the lesser harm, and that was not what was on their formulary, and if I don't "officially" have a disease , then it's harder for them to agree to proscribe it- oh, I got my claritin eventually, but I paid a ridiculous price for it. It now costs half of that in the retail stores, 10 years later. I am very allergic to certain things, the air quality here in the summer is horrible, and a quick dose of antihistamine can sometimes ward off an asthma attack, this isn't just for clearing up a stuffy nose, but keeping me breathing and letting me hear as my ears are prone to clogging up.

A wise nurse practitioner explained to me about 3 years ago why I should not take antihistamines if I am starting a chest cold, but to come in for treatment of chronic coughing bronchitis immediately, as I am more prone to trouble, and now I am sharing that information with the hope that others can avoid being stuck with a horrible, nagging cough for weeks. So far this has worked, trading off a runny nose for a few days and having the colds clear my body much faster.

[Gemini]

Gemini

what serum test did you do for Sjorgen's?

thanks

mamaw

I believe the testing for Sjogren's are called SS-A and SS-B antibody. Simple little blood test. However, like Celiac, it may be negative while a person does have Sjogren's. I always test positive on blood work, if I have the disease, so I am lucky to be able to have answers. Doctors take you more seriously too, which is pretty pathetic. An older test used is a biopsy of one of your salivary glands but I opted for the blood work and it was very positive. Lucky me.

Takala.....I never, ever use any OTC meds that will dry you out. It's torture for me, my mouth and eyes get sooooooo dry. I got sick over Christmas with a virus and just let it run it's course. However, that meant a month recovery time. I had a cough so bad, I pulled a muscle in my back and then had to visit the chiro for 3 visits. What a pain in the arse! You are correct, with Sjogren's, when you do get sick, it can be a long recovery time. To be honest, the Sjogren's makes my Celiac feel like a walk in the park. You can live symptom free and well with Celiac but not with Sjogren's. I won't even go into the money I have spent on my teeth.......

[mamaw]

Thank you. My sister has a dry throat conatantly & is always making noises like she is strangling to death. Very dry without mucous. I will hav eher ask the doc fo rthese tests.... I told two years ago that I thoought she had sjorgen's.SHe has never smoked.... thanks again

mamaw