Lost The Vision In My Right Eye!

[iluvfupa]

I am 21 year old male. I was diagnosed and have been gluten free for about 2 1/2 months. About 4 weeks ago I was getting a sharp pain in my right eye when I would look sharply with it. I was also seeing floaters. I was told it was an inflamed optic nerve, and underwent an MRI scan. This scan came up negative, and I was then told my problem was being caused by a sinus infection. After a few days on antibiotics my vision started to decrease and my eye was bright red so I went back in to get checked. I then was referred to retina specialist and was informed that I have ACUTE RETINAL NECROSIS, and that it is very serious and rare. Basically, they told me the chicken pox virus, came out from being dormant and attacked my eye causing the retina to detach. I was admitted to the hospital immediately to be put on anti-virals. After a few days, my vision was so so bad that I did not even know if my eye was open and I underwent surgery to reattach my retina. They put a buckle around my eye, and took the jelly out and replaced it with silicone. After surgery I remained on an antiviral IV for another ten days, and had to keep my head face down. I am now 20 days in, on oral anti virals and the steroid prednisone along with some eye drops. The good news is my retina is still staying attached and although my vision is very little, it has improved since surgery. Also, my left eye has thankfully remained unaffected. However it is a long road ahead, and I will have surgery again in the fall to remove the silicone. But I am left with some questions I was hoping someone on here might know.

This disorder/disease(I don’t really know what it is labeled as), can affect healthy individuals, but many times it can affect people undergoing chemotherapy or HIV positive people or someone with a decreased immune system. I got tested for tons of stuff and everything came back negative/normal, except one antibody was high, and they figure that was from celiac. They said they do not think celiac caused it and said that diet does not affect the immune system as much as I would think. So my question to you is, have you heard of celiac causing this disease in you or anyone you know? This is supposed to be pretty rare, so it would be very interested if anyone else was affected.

Also, I am otherwise a pretty healthy guy. Since being diagnosed with celiac I was working out regularly, eating healthy non-processed foods. I do not think I was glutened before this happened. I was drinking 1-2 days week binge college style before this happened. Any input would be great!

[Fiddle-Faddle]

This disorder/disease(I don’t really know what it is labeled as), can affect healthy individuals, but many times it can affect people undergoing chemotherapy or HIV positive people or someone with a decreased immune system.

First of all, welcome to the board! I hope you continue to improve.

What you're describing (what I've highlighted) is shingles, when the chicken pox virus reactivates. In addition, it seems to be common in people whose immune system is not decreased, but rather disfunctional. Celiac disease is an example of a sidfunctional immune system. It is not an allergy. It is the immune system freaking out in response to gluten, and then attacking the body.

Most of us on this board have more than one immune system problem. I have Hashimoto's disease, for example, andI have also had shingles.

Could celiac cause retinal necrosis? The doctors in this country are only just getting a tiny idea of what celiac CAN do to the human body. Most of them seem to have no clue how celiac rally works, anyway. I do wonder WHAT you were drinking "binge college style," as you put it. That could definitely screw things up for you even worse than you are already experiencing. And if it was beer, then you WERE glutened, of course!

Good luck, and keep us posted!

[Judyin Philly]

WELCOME TO THE BOARD. YOU WILL THE FOLKS ON HERE SO HELPFUL AND MANY ARE EXPERTS ON CELIAC AND REALATED DISEASES.

WHEN YOU FIRST WERE POSTING I THOUGHT 'DETACHED RETINA' BUT NEVER HEARD OF THE RARE DISEASE. GLAD YOU POSTED ALL THE TESTING ETC. SOUNDS LIKE YOU AND YOUR DRS WERE VERY THROUGH...I HAD A DETACHED RETINA AND HAD IMEDIATE SURGERY TOO BUT NOTHING AS SEVERE AS YOU WENT THROUGH.

I DON'T HAVE ANY ADVICE AS IT SEEMS YOU ARE GETTING GOOD CARE. THE ONLY THING I CAN SUGGEST IS YOU TRY TO ADHERE TO THE gluten-free DIET AND IF IT WAS BEER YOU WERE DRINKING...SORRY BUT THAT WILL HAVE TO GO...PEOPLE ON HERE TALK ABOUT THE gluten-free BEERS. YOU CAN FIND SOME POSTINGS ON WHAT BRANDS ETC.

AGAIN WELCOME AND HANG IN THERE AND WE'LL HELP YOU THROUGH THIS.

JUDY IN PHILLY

[iluvfupa]

First of all, welcome to the board! I hope you continue to improve.

What you're describing (what I've highlighted) is shingles, when the chicken pox virus reactivates. In addition, it seems to be common in people whose immune system is not decreased, but rather disfunctional. Celiac disease is an example of a sidfunctional immune system. It is not an allergy. It is the immune system freaking out in response to gluten, and then attacking the body.

Good luck, and keep us posted!

Thanks for the replies

It is NOT shingles, but similar in that for unknown reasons the chicken pox virus reactivates and manifests itself by attackng the eye. The other herpes type viruses can also cause this acute retinal necrosis, but instead of coming out as a cold sore, it attacks and kills the retina.

I only drank distilled liqours and rice beer, but it was excessive when I did. Obviously I am not going to be drinking like that anymore because this can attack both eyes, and I am going to do everything in my power for that not to happen.

I wonder if my body's reaction to not having gluten anymore could been a factor in developing this.

[BRUMI1968]

I don't know how long you have to be on prednisone, but you should definitely bone up on the vitamins and minerals that it steals from you (I forget what they are, to be honest, but the Internet never forgets). I was on high doses for a week or two then tapered to small doses for a year for ITP, a different autoimmune disease.

Hopefully you're only on it for a short while.

[iluvfupa]

I don't know how long you have to be on prednisone, but you should definitely bone up on the vitamins and minerals that it steals from you (I forget what they are, to be honest, but the Internet never forgets). I was on high doses for a week or two then tapered to small doses for a year for ITP, a different autoimmune disease.

Hopefully you're only on it for a short while.

I have been on since at least the 4th, it could have been a few days earlier if the steriods they gave me through IV was prednisone. I think they are tapering me off 10mg a week, started with 60 then 50 and currently on 40mg, which is two pills. I take GNC Megaman for vitamins and an antioxidant loaded with vit A and C.

Did it give you crazy dreams? I have had a very vivid dream every night from these pills, it is crazy. They actually wake me up.

[BRUMI1968]

That stuff is murder. I could not sleep yet was physically and emotionally exhausted. I had to take sleeping pills. Also, it made everyone and everything ugly and stinky...I used to have to ride the bus when i was on it, right at the time of day that I was at my lowest, and I had never before been so negative about anything. When you go off it, they have to test your adrenal glands to be sure they still work after having bee replaced by the prednisone. The test is interesting - it tastes funny. They give you an IV of adreneline or of something that makes your adreneline come on, I forget which. Anyway, I hate that stuff. The dreams, the anger, the tiredness -- I prefer my own adreneline, thanks. (I've been on it two separate times, longer the first time, but more harshly the second time - through IV which stings like the devil!)

Anyway, take care. Be thankful you'll be off it soon enough. Yuck.

[iluvfupa]

Wow, sounds like the side effects are not hitting me as hard. I have been getting angry sometimes, but I figure it is from being around my parents every day and having one eye does not help things either:P

[Judyin Philly]

Wow, sounds like the side effects are not hitting me as hard. I have been getting angry sometimes, but I figure it is from being around my parents every day and having one eye does not help things either:P

NOPE, THERE IS EVEN A NAME FOR IT...I DIDN'T KNOW TILL MY HUSBAND WENT BIRDING WITH OUR DR. AND HE WAS TELLING HIM OUT OF CONTROL I WAS GETTING ON THE PREDIZONE..DR SAID.." WELL YOU KNOW THERE IS A NAME FOR THIS...." IT'S CALLED 'ROID-RAGE' JIM MY HUBBY WAS RELIEVED AS HE THOUGHT I WAS LOSEING MY MIND...I'D EITHER BE SCREAMING AND YELLING (EVEN THE CAT TOOK COVER) OR I'D BE IN BED CRYING OR I'D BE SCRUBING AND CLEANING LIKE A MAD WOMAN...HATE THAT DRUG BUT IT DOES SAVE OUR LIVES.

JUDY IN PHILLY

HANG IN THERE..

[tarnalberry]

while 'roid-rage is more common with anabolic steroids than corticosteroids like prednisone, it certainly does happen with prednisone. as I tell my doctor, leave me on that stuff more than a week, and I get b%$@#y. (I have asthma, and often find myself on two week bursts, going from 50mg a day, down to 10mg a day over two weeks.) it happened to my father's whole side of the family when they were on it - it seems to be a side effect that runs in families. there's not a lot you can do about it but try extra hard to avoid tense/stressful situations and remind yourself that you will overreact far more easily than you ever thought possible.

good luck.

[Fiddle-Faddle]

Drink as much as you can (water, juice, herbal tea, NOT ALCOHOL)--it'll help you excrete some of the toxic effects.

[iluvfupa]

Argh, I think the prednisone is making me break out like a 14 year old. All of a sudden I have acne all down my back and my chest and on forehead. I guess it should be the least of my worries, but it is still one more thing to deal with

[SurreyGirl]

...ACUTE RETINAL NECROSIS, and that it is very serious and rare. Basically, they told me the chicken pox virus, came out from being dormant and attacked my eye causing the retina to detach... ...This disorder/disease(I don’t really know what it is labeled as), can affect healthy individuals, but many times it can affect people undergoing chemotherapy or HIV positive people or someone with a decreased immune system. I got tested for tons of stuff and everything came back negative/normal, except one antibody was high, and they figure that was from celiac. They said they do not think celiac caused it and said that diet does not affect the immune system as much as I would think.... So my question to you is, have you heard of celiac causing this disease in you or anyone you know? This is supposed to be pretty rare, so it would be very interested if anyone else was affected.

Hi iluv.., welcome - and what a scary experience you have had!

I have been recently reading a lot about immune complexes and this might help to add some input into what might potentially be going on (just ignore thyroid reference in the link name and look at the link):

Open Original Shared Link

You might want to search some more about these immune complexes, also under tissue-bound immune complexes (in pubmed or similar). My understanding is that gluten (and other antibody events) can lead to a build-up of these complexes in the blood stream, then they either flow about or get attached to tissues and if they do, they lead to inflammation and damage. My interest stemmed from looking into an autoimmune inner ear disease, where there is a loss of hearing over a few months, this is in a genetic condition that has a faulty DNA repair, thankfully this was not my son (yet), although he has the same genetic condition, so I am naturally concerned and trying to intercept (avoid?) the problem. I am actually writing to my son's neurologist to find out how the autoimmune load in the body can be accurately assessed and/or removed. I have heard about plasmapheresis, but I have no idea whether this is at all a practical solution for my son as we haven't had any tests on this yet.

I also want to find out whether this attachment to certain organs is random or is it due to other factors - protein similarity perhaps?

I suspect that if you are celiac, then the prolonged presence/build up of these gluten-specific complexes was probably significant. It's interesting though that the problem occurred after you went gluten-free. I wonder whether anyone is knowledgable enough to link this somehow?

In my readings, I have also come across mention of lectins, that they increase stickiness of these complexes (bean family, peanuts, grains too). We are trying to limit those (already cut out gluten and most dairy).

Sending you my best wishes.

[Fiddle-Faddle]

Argh, I think the prednisone is making me break out like a 14 year old. All of a sudden I have acne all down my back and my chest and on forehead. I guess it should be the least of my worries, but it is still one more thing to deal with

Hi, I'm just checking in on you--how are you doing?

[iluvfupa]

I am doing pretty well. Just went to the doctor on Friday. Everything is stable, and the virus "spots" in my eye are getting smaller. My left eye is still unaffected. I feel like my vision is improving, but I still can not see much. They say we wont know if/or how much eye sight I might get back until after my next surgery. I am trying to not get depressed too much, but it is hard when I have been cooped up at my parents’ house so long. Luckily, the girl I am seeing is great and has come to see me every weekend even though she goes to school 2 hrs away.

So I found out I am going to be on the anti-virals long term. They are called famvil and cost 384 a month after insurance . As of now, we have a prescription for four months, and they did not say how much longer after that they want me on. I am hoping to switch to oral acyclovir, which is only a 10 buck co pay for 3 months. I have to talk to the Dr. about it, but I would think it would be a suitable replacement because they had me on acyclovir via IV for the first 2 weeks. Anyone have any experience that Doctor’s are not really aware of how expensive the medicine that they are prescribing is?

This is pretty interesting. My parents told me when this started that their neighbor has a glass eye. So I figured if my sight did not improve, I would talk to him to get some tips on living with one eye. Well a few days ago, my dad came in and said he just talked to him, and it turns out he had the exact same thing I have! I guess his was caught a little later than mine, and after six surgeries and not having his sight he just had them take it out because of complications of cataracts and stuff. He said he would be happy to talk to me but it might make me depressed because he lost his eye, lol. Anyway, it is pretty crazy because this is pretty rare. I am getting treated at the Eye Institute at Froedert hospital in Milwaukee (which is where my parents’ neighbor got treated), and it is something like 8 floors, and each level is a different eye specialty. Well my floor is the retina floor, and they said they only see 1 or 2 cases a year.

[ravenwoodglass]

I am doing pretty well. Just went to the doctor on Friday. Everything is stable, and the virus "spots" in my eye are getting smaller. My left eye is still unaffected. I feel like my vision is improving, but I still can not see much. They say we wont know if/or how much eye sight I might get back until after my next surgery. I am trying to not get depressed too much, but it is hard when I have been cooped up at my parents’ house so long. Luckily, the girl I am seeing is great and has come to see me every weekend even though she goes to school 2 hrs away.

So I found out I am going to be on the anti-virals long term. They are called famvil and cost 384 a month after insurance . As of now, we have a prescription for four months, and they did not say how much longer after that they want me on. I am hoping to switch to oral acyclovir, which is only a 10 buck co pay for 3 months. I have to talk to the Dr. about it, but I would think it would be a suitable replacement because they had me on acyclovir via IV for the first 2 weeks. Anyone have any experience that Doctor’s are not really aware of how expensive the medicine that they are prescribing is?

This is pretty interesting. My parents told me when this started that their neighbor has a glass eye. So I figured if my sight did not improve, I would talk to him to get some tips on living with one eye. Well a few days ago, my dad came in and said he just talked to him, and it turns out he had the exact same thing I have! I guess his was caught a little later than mine, and after six surgeries and not having his sight he just had them take it out because of complications of cataracts and stuff. He said he would be happy to talk to me but it might make me depressed because he lost his eye, lol. Anyway, it is pretty crazy because this is pretty rare. I am getting treated at the Eye Institute at Froedert hospital in Milwaukee (which is where my parents’ neighbor got treated), and it is something like 8 floors, and each level is a different eye specialty. Well my floor is the retina floor, and they said they only see 1 or 2 cases a year.

I am so sorry this has happened. It must be so hard to be couped up. I wanted to mention something about your meds and the expense, you could try calling the manufacturor of the drug and tell them that your doctor thinks it is the best one for you but that you may need to switch to a different drug because of the cost. Sometimes they will 'donate' drugs to keep their business and as a good will gesture. It's worth a shot.