Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Light Sensitive Upon Waking

ms-sillyak-screwed

Recommended Posts

darlindeb25 Collaborator
darlindeb25
Posted
Unfortunately after gluten free stuff still can come out.
Sad, but true! Unfortunately, I think the damage is done while we are trying to figure out what's going on, going gluten free helps stop further damage, but once other autoimmune conditions get in, they are there. Hypothyroidism is not reversible, you can try to handle it, keep it under control, but you will be on meds forever--once you have Raynauds, you have it, it may go in remission for a time, but it's always there, just as Parkinson's is always there. Neuropathy is always there, although, sometimes nerves can repair themselves, some of us have too much damage, like me.

As for the dry eyes, this week, I may ask him for something else, they are driving me nuts and the Refresh or Systane just are not cutting it. Feeling like there is sand in your eyes all the time just sucks, especially when your boss can fix the problem for you!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tiffjake Enthusiast
tiffjake
Posted
Again, this is another symptom and common problem for people with Sjogren's Syndrome. My eyes were so light sensitive pre-gluten-free that I had to wear my Rx sunglasses inside. They are still light sensitive but it has improved dramatically after going gluten-free and allowing my body to re-balance and heal. As I have stated before, you can never get rid of an autoimmune problem but you can become almost asymptomatic if you do not cheat on the diet and take care of your eyes. Many people with celiac disease have Sjogren's.....it's almost guaranteed!

You quoted me when you replied to this, so I wasn't sure if you were directing your comment to me, but I don't have dry eyes, and from what I understand, Sjogren's is a drying-disease, right? Dry skin, dry eyes, etc?

I am light sensitive, but after talking with my doctor, I found out that is is (more) common in people with light eyes, which I have. But they are not dry.

tiffjake Enthusiast
tiffjake
Posted

I just noticed that the original post was deleted and replaced with a "-" mark (???) but you can see on Post #5 (my post) where I quoted mssillyackscrewed and she was asking about light sensitivity, not dry eyes, so I don't know what happened with the thread ;) but it looks like it took a turn to dry eyes, now I understand why the last post I saw was talking about dry eyes!

And about sleeping in contacts, I have worn the 30 day Focus Night & Day contacts for 2 years, usually for 30 days straight (all day and all night) and sometime for 6 weeks if I forget to take them out, and I have never had any problem with them. I have had my eyes checked yearly, and no problems. And I work with two D.O.'s now, as an optician, so I know they would have said something if they didn't want me to do that. We sell a LOT of the Night & Days and I have never heard of someone coming back with complaints (while I am sure that some do, I just haven't heard them first hand). So...I totally understand what you are saying darlindeb, I think it is a personal thing, because I have not had any problems with wearing my contacts for 30 days (and nights) straight.

Just a note of caution for those of you who wear the Night/Day contacts. I work for a contact lens specialist and he is adamant with our patients--ABSOLUTELY NEVER SLEEP IN CONTACTS!!!!! Even if the companies tell you it is safe, it isn't. If you think about it, truly think about it, why would it be safe for your eyes to sleep in contacts? Blinking is what keeps your eyes moist, and you never blink while sleeping. Some people, many people sleep with their eyes open a crack, or even more, and that allows even more drying. It's never good to sleep in contacts and more people get eye infections because they sleep in contacts. We have patients who get their contacts stuck on their eyes because of sleeping in them--never good. So, please, think about removing them before going to bed, for the safety of your eyes, they are the windows to your world.

Also, for dry eyes, the best product I have found is Refresh Liquigel, it is over the counter, so anyone can get it. My doc recommends using it at bedtime because it does blur your vision a little for a few minutes, only because it is a gel, but it does relieve the eyes so much. There is a Refresh that is not a gel that works very well too, I just love the gel. He also highly recommends Systane, also over the counter. He doesn't recommend any other product on the market, says they are not as good as these 2. I do know both of these, they work very well, I have been diagnosed with dry eye, so I have them on hand at all times. The patients love Dr. Z., so he must know what he is talking about!

Deb

darlindeb25 Collaborator
darlindeb25
Posted

Well Tiffany, that's great for you, but I still stick with my original post and what Dr. Z says. I truly believe that for the safety of your eyes, you should not leave contacts on them for 24 hours a day and absolutely NEVER for 30 days at a time. I have a son that wears contacts and a nephew and we have talked about this often. My nephew had a contact stuck on his eye and it was very scary for him, we have had people do damage to their eyes by leaving contacts in while sleeping. You have been very lucky Tiffany. We see patients every week who have major infections going on because of sleeping in their contacts and we too, sell a lot of the night/days--I wonder if it depends on the climate in the area you live in too--who knows, BUT, it stands to reason, it's not a good thing.

Sorry mssillyackscrewed, that we ran away with your thread, I guess we thought we were helping you out and it became an eye discussion. My eyes are light sensitive too, very much so. Some people are more light sensitive than others, if it is a very severe problem, ask your doctor. I know we do not have a lot of faith in doctors here, but sometimes light sensitivity is an adrenal problem. I have an adrenal problem and I have major problems with light.

tiffjake Enthusiast
tiffjake
Posted
Well Tiffany, that's great for you, but I still stick with my original post and what Dr. Z says. I truly believe that for the safety of your eyes, you should not leave contacts on them for 24 hours a day and absolutely NEVER for 30 days at a time. I have a son that wears contacts and a nephew and we have talked about this often. My nephew had a contact stuck on his eye and it was very scary for him, we have had people do damage to their eyes by leaving contacts in while sleeping. You have been very lucky Tiffany. We see patients every week who have major infections going on because of sleeping in their contacts and we too, sell a lot of the night/days--I wonder if it depends on the climate in the area you live in too--who knows, BUT, it stands to reason, it's not a good thing.

I hope my post didn't sound snippy, because that was not my intention, and it is not my intention here, but I just want to say that this is NOT about my OPINION, BUT THE FACT that Focus Night and Day contacts were approved by the FDA to be worn for 30 days and nights straight. The vast majority of people can and do wear those for that 30 days.

You work in a doctors office, so naturally the people you see will be people who have a PROBLEM with their eye or contacts, not the millions of people who wear them with NO problems at all, like me. I understand your concerns, I just think it is an inapproperate jump to conclude that wearing contacts at night is dangerous for ALL people when the FDA and governing agencies have tested the contacts and the people to make sure it is safe, and most people do not have a problem with it.

Again, my intention is not at all to argue with you or to continue a conversation about something we will not agree. I just don't want other people who read this thread to fall under the impression that you can not wear contacts at night, when you obviously can, as millions of people do. Companies like Vistakon (Ciba Vision) and Johnson & Johnson would not be allowed, by the FDA, to promote and market products for night wear if they were not found to be safe for the majority of patients that wear them.

BUT, I agree with you that sleeping in your contacts is not good for your eyes (,unless you are in a contact lens that is made for night wear.)

Hope I didn't ruffle any feathers. :(

Gemini Experienced
Gemini
Posted
Again, my intention is not at all to argue with you or to continue a conversation about something we will not agree. I just don't want other people who read this thread to fall under the impression that you can not wear contacts at night, when you obviously can, as millions of people do. Companies like Vistakon (Ciba Vision) and Johnson & Johnson would not be allowed, by the FDA, to promote and market products for night wear if they were not found to be safe for the majority of patients that wear them.

That statement is not quite true.....the big pharmaceutical companies have long promoted many drugs that, after a short time, were pulled from the market for life threatening side effects. We are constantly barraged on TV with these ridiculous ads and many of these drugs are not safe for many people. The FDA sometimes pushes through a drug quickly with bad results.

You would have to have a pretty healthy eye to not have problems from wearing contacts all night. If you do have any eye problems, the majority of physicians will tell you not to do that but everyone has the right to assume their own risk level.

On a different note, light sensitivity is common and a side effect of Sjogren's Syndrome, so that was the reason I originally stated that. The only way to tell if a person has it is to do the blood test.....it can't be diagnosed by looking at the eye only.

tiffjake Enthusiast
tiffjake
Posted
That statement is not quite true.....the big pharmaceutical companies have long promoted many drugs that, after a short time, were pulled from the market for life threatening side effects. We are constantly barraged on TV with these ridiculous ads and many of these drugs are not safe for many people. The FDA sometimes pushes through a drug quickly with bad results.

You would have to have a pretty healthy eye to not have problems from wearing contacts all night. If you do have any eye problems, the majority of physicians will tell you not to do that but everyone has the right to assume their own risk level.

On a different note, light sensitivity is common and a side effect of Sjogren's Syndrome, so that was the reason I originally stated that. The only way to tell if a person has it is to do the blood test.....it can't be diagnosed by looking at the eye only.

I spoke with my doc today (as I actually needed a new eye exam to renew my contacts Rx) and he agreed that wearing contacts at night can increase the changes of an eye infection, but that these contacts are high oxygen silicone-based contacts, and that is why they are approved for night wear. While they need to be removed to be cleaned, they are not dangerous to wear at night. Everyone has their own opinion, and their own doctors instructions. As long as I take them out weekly to clean them with Aeosept, then I am good to go. I don't feel like I am taking a risk at all, based on what I have read, seen, and been told by my doc. To each his own.

And on the different note, I thought that Sjogrens was a "drying" disease? I did not know that it had anything to do with light. Interesting. Wouldn't the initial symptoms be dry skin, dry hair, dry nailbeds, things of this nature? Just wondering. Thanks for the info! :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

And on the different note, I thought that Sjogrens was a "drying" disease? I did not know that it had anything to do with light. Interesting. Wouldn't the initial symptoms be dry skin, dry hair, dry nailbeds, things of this nature? Just wondering. Thanks for the info! :)

darlindeb25 Collaborator
darlindeb25
Posted

Well Tiffany--I stick to my original warning--wearing contacts while sleeping is dangerous. Yes, I work for an eye doctor, an optometrist, who is a contact lens specialist, one who comes highly recommended by many other doctors. We do fit many patients with the Focus Night/Days and we always recommend they do not wear them to bed, absolutely never. Dr. Z is adamant with all patients on that fact! Just because a company says it is ok, does not mean you have to do it. Just as my mom always used to say, "Just because someone tells you to jump off a bridge, does not mean you have to jump off a bridge!!!" If you honestly wear your contacts for 6 weeks at a time, you are very lucky that you have not damaged your eyes, very lucky in deed. Please do not tell others it is ok to do the same thing!

tiffjake Enthusiast
tiffjake
Posted
Please do not tell others it is ok to do the same thing!

I don't believe that I have, here, or anywhere else. I tell people to do what their Dr suggested they do, and for me, that was to take them out weekly to clean them. I never suggested anyone wear them for 6 weeks. I simply said that I had, in the past, forgot to take them out, and wore them for longer than the 30 days suggested by the contact lens company.

And I don't equate following the FDA and Contact Lens manufacturer's recomendations to "jumping off a bridge"......especially when confirmed with MY doctor.

I don't want to "fight" with you, and I don't really understand what the hostility is all about. You have your (and your Doctors) opinion, and I have my (and my Doctors) opinion. No harm, no foul, as far as I can see, right? :(

PS- I apologize if I have done ANYTHING to piss you off...that was never my intention. Just trying to share another point of view, which I think it always a good thing, even if we disagree.

darlindeb25 Collaborator
darlindeb25
Posted

Tiffany, I am not insulted by you or pissed off, simply stating a fact. I'm sorry that you are insulted by the opinion of the doctor I work for--he is a specialist and does not receive any kickbacks from any of these companies. So, he has no reason to argue one way or the other, his opinion is based strictly on the health of the eye and if my son was wearing Focus Night/Day, I would absolutely advice he take them out every night and not sleep in them. Your eyes are the windows to your world--their safety is of the utmost importance! What benefit do your eyes get from wearing a contact to bed???

tiffjake Enthusiast
tiffjake
Posted
Tiffany, I am not insulted by you or pissed off, simply stating a fact. I'm sorry that you are insulted by the opinion of the doctor I work for--

I am not, and I didn't say that I was.

And I am not sure that they benefit (?) at all, but it is easier for me, and since I was told that it was ok with this brand, I don't worry about it. But that is like asking if I benefit from eating gluten-free chocolate. No, I don't benefit really, but it is ok, so I do. I am sure some people see harm in it, with all of the sugar and chemicals. And some people and doctors are very passionate about not eating so much sugar, and they are not wrong, and I am not right, we just have different opinions. :)

  • 5 months later...
paul120 Newbie
paul120
Posted

Its a very good discussion..i am glad to ba a part of this..

Open Original Shared Link

ShayFL Enthusiast
ShayFL
Posted

Just throwing this in here. I wear contacts. And for years, I wore the extended wear and I slept in them. Only taking them out once a week for a soaking. Well, I started to have some infections with my eyes and went to my eye doctor. The infections were easy enough to treat, but he said that my eyes were "growing new blood vessels" to make up for the "lack of oxygen" they were getting by extended wear. He said my case was not bad yet, but if I kept wearing them at night, that it could get really bad and effect the function of my eyes. I forget what it is called. Anyway, that scared me. I am an artist and very visual. So I take them out every night and I must say that I do not get infections anymore and my eyes are not as "fatigued". They feel fresh.

Regardless of what the FDA says, common sense sometimes has to take over. Your eyes need to "breath" and nighttime is when cells do most of their repair work. It just makes sense to take them out.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      The Dark Side of Gluten-Free: Counterfeit Labels and Global Food Safety Failures

    2. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      Most people are already deficient in minerals. I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter. I happen to get over 100% of rda vitamins and minerals. I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined....
    3. knitty kitty
      - knitty kitty replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      Reverse osmosis water pulls electrolyte minerals out of the body. If used for cooking, RO water will even pull even more electrolytes out of the food. If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance. The symptoms of Electrolyte Imbalance are similar to those that occur...
    4. Wheatwacked
      - Wheatwacked replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      Library paste and paper mache. I have in passing read of wheat based glue used to glue fish tank filters together so it is not surprising they might be in refridgerator filters. Seems the issue with bottled water would be at the personal filters rather than the mass filtering. Just have to boycott the brands that effect you. Gatorade drinks all have...
    5. YoshiLuckyJackpotWinner888
      - YoshiLuckyJackpotWinner888 replied to YoshiLuckyJackpotWinner888's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Water filters are a potential problem for Celiac Disease

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,577
    • Most Online (within 30 mins)
      7,748
    Claire Carucci
    Newest Member
    Claire Carucci
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      Most people are already deficient in minerals.  I can understand the concern. However, if you do happen to get enough through supplementation, drinking pure distilled water is not going to matter.  I happen to get over 100% of rda vitamins and minerals.   I push myself to get 4000 mg of potassium a day through food, drinks, and supplements combined. I don’t know anyone else that does. The rda is closer to 4700 mg a day. For anyone else that might be deficient, I suppose tap water might be a better option.  I personally can’t stand the taste of most city tap water sources.  I don’t mind mineral water and prefer it when possible. I recently found out we would need to drink 5 liters of San Pellagrino mineral water a day to get enough lithium to satisfy the suggested 1 mg a day. Unfortunately, this and other mineral waters can also have trace amounts of uranium that occur naturally in nature. Uranium is not a good thing to have in your water. I wouldn’t want that or naturally occurring lead in my water.  There is no perfect solution for drinking water.  Smart water distills and then adds back in some electrolytes.  I could evaporate two gallons day of tap water or mineral water and the remaining sodium, potassium, calcium, magnesium, iron, etc… wouldn’t amount to what I already consume on a daily basis. I’m not worried about drinking distilled water. 
    • knitty kitty
      Water filters are a potential problem for Celiac Disease

      By knitty kitty · Posted

      Reverse osmosis water pulls electrolyte minerals out of the body.  If used for cooking, RO water will even pull even more electrolytes out of the food.  If you're not replacing electrolytes because you're eating food cooked with RO water, you can suffer from Electrolyte Imbalance.  The symptoms of Electrolyte Imbalance are similar to those that occur with being exposed to gluten.   Also consider that many people with Celiac disease have malabsorption issues and may already be low in electrolytes.  Exposure to RO water may create some health changes more quickly than in healthier individuals.   RO water impacts the body in many ways.  Read this fascinating study.   Long-Term Consumption of Purified Water Altered Amino Acid, Fatty Acid and Energy Metabolism in Livers of Rats https://pmc.ncbi.nlm.nih.gov/articles/PMC11122726/ Drink mineral water.  
    • Wheatwacked
      Water filters are a potential problem for Celiac Disease

      By Wheatwacked · Posted

      Library paste and paper mache.  I have in passing read of wheat based glue used to glue fish tank filters together so it is not surprising they might be in refridgerator filters. Seems the issue with bottled water would be at the personal filters rather than the mass filtering.  Just have to boycott the brands that effect you.  Gatorade drinks all have either gums, modified starches or stevia that might be affecting you.  Looking for energy or hydration try Red Bull.  It has the vitamins, minerals, antioxidant Taurine, sugar and glucose to process the sugar from mouth to ATP and clean up. Taurine is essential for protecting mitochondria from damage, such as from reactive oxygen species (ROS) or calcium overload. If you are exclusively drinking bottled water you may want to consider taking Lithium Orotate 5 mg.  We need about 1 mg a day of Lithium and mostly it is gotten from ground water.  Lithium deficiency can cause anxiety and suicide.  I find it helpful. Lithium in the public water supply and suicide mortality in Texas: Journal of Psychiatric Research Is Lithium a Micronutrient? From Biological Activity and Epidemiological Observation to Food Fortification
    • YoshiLuckyJackpotWinner888
      Water filters are a potential problem for Celiac Disease

      By YoshiLuckyJackpotWinner888 · Posted

      What non organic or nonorganic molecules from a plastic bottle of water can trigger a reaction that I have only experienced during an auto immune experience? There really should not be any organic molecules in  such a bottle. I seen a thread where it was mentioned that his refrigerator water filter tested positive for gluten when he had it checked. If I went to physician to get checked for other possible triggers from a water bottle, I don’t think that will go anywhere. Again, distilled water containers cause no reactions. I’m not an industry expert, but something is there.  I don’t think that this is a case of microplastics causing this. Too bad we can’t call upon some third party investigation.  
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      It’s understandable to want to be cautious, especially after experiencing symptoms. However, there is currently no scientific evidence that reverse osmosis or standard activated carbon water filters expose people to gluten in amounts that would trigger celiac disease. Gluten is a protein, and if any starch-based binder were used in filter manufacturing, it would not pass through RO membranes or remain in finished bottled water at clinically meaningful levels. Plain water — filtered, RO, or bottled — does not contain gluten unless it is intentionally added (which would require labeling). Steam-distilled water is certainly safe, but it is not considered medically necessary for people with celiac disease. If reactions are occurring, it may be helpful to explore other potential explanations with a healthcare provider rather than assuming filter-related gluten exposure.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.