Eye Problems

[gooser]

Hello,

I'm new to this board and don't really know if I have celiac disease. I have had problems with acid reflux for years, but wasn't officially diagnosed till last year.

About 2 years ago I had episcleritis. My right eye was very painfull and had a bulge in it. None of my doctors seemed too concerned with it and it went away.

Just recently, my new optometrist told me that episcleritis is usually associated with autoimmune disorders (arthritis, crohns disease, ibs).

About every month or two my right eye just decides to go bright red. it only lasts for a day or two and my eye feels dry. This really disturbs me. Does anyone else have this problem?

It seems to coincide with really bad acid reflux episodes but my acid reflux is mostly burping not burning. I also sometimes have diarhea.

I would never have thought of celiac disease but last winter I developed a rash on my knees, elbows and knuckles. I thought it some cleaner I was using cause it went away but i would still get itchy spots on my knuckles. Then about 2 months ago, it came back. It itched terribly with blisters and when I scratched the blisters, they had clear fluid and would fill back up quickly. THe only thing i found on the internet like it was HD.

Sorry this is so long. I just wondered if anyone else had problems with their eyes. I tried to talk to my doctor about it but he just refered me to a dermatologist for the rash and I cant get in see them till sept and I'm so tired of feeling terrible.

I have a brother with Graves disease and am having a thyroid test but the thyroid test i had 2 years ago was normal. I know something is wrong with me and it all seems to be related to food. I feel like crap after i eat.

Thanks for letting me vent.

gooser

[lovegrov]

I don't know about the eye problem, but let me tell you that as a long-time DH (not HD) sufferer, the rash you have sounds exactly like DH. You need to see a dermatolgist when you have active blisters with fluid in them. If he diagnoses DH then you need to go gluten free because you either have or will have celiac disease. You might take dapsone for a while to help with the blisters, but going gluten-free is the only real answer.

richard

[joem5644]

The fact that the eyes are involved would indicate that it could be "cicatricial pemphigoid". Do a search on the internet for "pemphigoid" and there should be a reference to this. But you should have your dermatologist test for celiac disease or pemphigoid. The areas affected are the mucous membranes which could be the eyes or the mouth, throat, and any other mucous areas. Blisters are formed and if it is celiac disease, eliminate gluten from your diet. If it is pemphigoid, you may need steroids. Act quickly because it may affect your sight. Good Luck

[judy04]

Hi Gooser,

Just wanted to let you know that the only symptoms I

had for 3 years before being diagnosed is problems with

my eyes. It all started when I had a benign nodule

on my thyroid.After surg, I went to my allergist who

tested me for environmental allergies, trees ,grass,etc.

I was allergic to these things, but the problem with

the eyes never got better, they were red, itchy,dry,

burning, and I had stabbing pains in them. I went

to an Opthamologist who also diagnosed me with

seasonal allergies. My allergist got so angry when I

continued to complain that one day he just threw up

his hands and said "this project isn't working"! I

ran out of the office and never went back. He never

once offered to do a Celiac Panel, but did a wheat

scratch test which was neg. To make a long story short

I began to have GI problems, I found after I had a

scope that I had severe acid reflux (Barrett's disease)

and I tested positive on one of the tests for Celiac.

I started on a gluten-free diet and almost immediately my

eye symptoms improved, my allergies have not bothered

me very much and I don't need to go for shots every

week. What makes me so mad is that my allergist was

board certified but never tested me for Celiac, had he just

followed through I could have been spared these last

three years of hell!

[lbaroosh]

I found that allergists think they know everything about food allergies and that if you don't get hives or have breating issues your are not allergic. Delayed food intolerances don't come into play. I don't think they even believe they exist. If it isn't diagnosed with an easy scratch test forget it!

Doctors are so frustrating!!!!!

[judy04]

Ibaroosh,

Amen!!

[bonnieo]

How have you gone about identifying food intolerances?

[plantime]

I used an elimination diet with a very specific food journal. I kept track of every little headache, right down to what time it set in, and how long it lasted. Muscle cramps, fatigue, constipation, every thing was noted. Time consuming, yes. But I figured out what not to eat to make myself feel better. Now, I am taking allergy shots, but I feel miserable. I have a headache that won't go away, and muscle cramps again. The allergist said the shots are not the cause, but I wonder? Does anyone know exactly what is in allergy shots?

[bonnieo]

Did you eliminate all suspect foods then add things back one at a time? Or did you just keep eating normally and keep track of everything? How long did you eliminate a food before you tried it again?

Are your allergy shots related to your food intolerances?

[plantime]

I started by eliminating everything processed (except ice cream, it is my big weakness!). I ate only meat, veggies, fruit, and dairy. After two weeks eating just that, I felt much better, so I added back in foods, one at a time (just like the pediatrician told me to do when starting my babies on solid foods). The first thing I added back in was bread, which caused an immediate problem: swollen sinuses and abdominal pain. I took it back out, waited two more weeks, and tried it again. Since I had the same reaction, I took it back out, and made an appointment with my doctor. She had me tested for a wheat allergy, which came back negative, but a grass allergy test came back positive. Since wheat is a member of the grass family, and rice is also a member (I have anaphylactic reactions to rice), I am wondering if the wheat problem is because it is a grass. If it is, then the allergy shots would be related to my food issues, and perhaps just making me worse. I don't like second-guessing my doctor, but my health is my responsibility. I know how much my head has hurt since I started allergy shots, and how fatigued I have been, and it is hard to explain to someone that has never been through it. For most people, allergy shots work wonderfully. My body does not tolerate many convential medical treatments, though, I always seem to be in the "2%" that has adverse reactions!

Just to make sure I am being clear, I eliminated all suspect foods at first, and did not add them in until after I felt better.

[Guest ~wAvE WeT sAnD~]

I've had very dry eyes lately too...sometimes my contacts are foggy...maybe it's the gluten but I don't know. I read the posts about toiletries containing gluten and found out my shampoo AND conditioner contain....WHEAT GERM. Maybe it's getting in my eyes. Any thoughts?

~Jill

[gooser]

Thank you for all the replies. I finally saw a dermatologist today and she said it was DH. I didn't even tell her thats what I thought it was, she just said it after only 5 minutes. She did a biopsy to confirm it but she said she was sure thats what I have. She said I would need to go on a gluten free diet and would need to see a nutritionist. I have to go back in 2 weeks to discuss it and the biopsy. She told me to research it on the internet in the meantime.

I've read someplaces that to have DH is to have celiac disease and some other places say that's not always so. It's confusing. Either way the treatment is the same.

My husband is diabetic so I buy diabetic foods and now I will need to buy gluten free foods. My 11 year old is not going to like this. He wants us to buy donuts and chocolate cake all the time.

I'm just not sure where to start. Do I buy a bread machine to make my own bread? Any help is appreciated.

THanks,

Gooser

[karen149]

Hi,

I have dry eyes too. And dry mouth, etc. I was recently diagnosed with Sjogren's Syndrome. All kinds of celiac info links Sjogren's, but Sjogren's sites say nothing about celiac. I am scheduled to have plugs put in my eyes soon so I don't have to be using eye drops every hour. I'm glad you found an answer, though.

Karen

[celiacfreeman]

just red eyes for me after going gluten free. my only symptom now is red eyes.

used to have to much saliva every once in a while. Not since going gluten-free, and my breathing long deep breath is greatly improved.

[natalieb]

I see you posted a while ago but I hope you read this. I have been posting all over here because over a year ago I was diagnosed with celiac disease, however, even after being gluten-free, I developed sores in my mouth, achy joints, bad red swollen eyes, and a dry nose, (I became nasal for the first time in 39 years), I would occasionally become hoarse as well. My number for gluten (blood work) came down in some areas and spiked in others. I had horrible doctor care here in Pgh. I then developed extreme stiffness in my thumbs. I also had joint pain everywhere, but partic. in my hips, and hands. I finally had had it and went to the cleveland clinic. They diagnosed me with sjogrens syndrome. by the way, sjogrens can accompany celiac disease. I am still gluten-free, but now I take an immunosuppressor called plaquenil. They have given me a steroid eye drop called restasis, however, I have recently had some problems with the drug so I have to call my doctor on monday. What made me want to write you is when you said your eyes. I just thought that it was normal for my eyes to look red, I mean blood red. I would also have sun sensitivity with my eyes and will forever. That is all due to sjogrens syndrome. Also, I had pain in my jaw, its not as bad now that I take the immunosuppressor. Actually, what sjogrens is, is an autoimmune disease that destroys your salivary glands which produce moistre in your mouth, nose, eyes, etc. I trust my doc from the cleveland clinic. He has given me something that no doctor here in my town of pittsburgh could do, he gave me a better quality of life.

[judy04]

Natalieb,

I've always had a problem with my eyes, redness, pain, sensitivity

to sunlight, etc. I have suspected sjogren's but I never followed up

on it. Would you mind telling me what kind of Dr. you went to and

what tests he performed? I would like to get this resolved, they have improved

on a gluten-free diet but problems have not gone away completely.