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
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
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

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

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
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
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
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

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

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
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

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
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

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

Open Original Shared Link

ShayFL Enthusiast

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.

  • 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. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    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

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.