Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

Eye Swelling And Crusting--help!


Threebrainedbeing

Recommended Posts

Threebrainedbeing Rookie

A little background on me: I have determined two and a half years ago (?) that I have a gluten allergy through a nutritionist putting me on a special 'elimination diet' where I eliminated all possible allergens from my diet and added them back one at a time for a week apiece, for every meal of the day. I had been experiencing respiratory symptoms and wheezing, which is what told me that something was wrong. When I elimintaed gluten from my diet, some magical things happened, like the brain fog I used to experience all my life periodically went away completely. I had more regualr bowel movements. Etc.

I have been currently working with someone who is a full blown Celiac, and he is telling me all sorts of stuff that we can and can't eat that really surprised me. As it is, I have been only eliminating the obvious: Wheat, Oats, Barley, Rye, Spelt, Kamut. I was not aware of all of the potential hazards of mis-labeled products and traces of gluten in foods due to shared processing, etc. I even cheat at times, sometimes without incident, sometimes with.

And now for the question:

I am having an eye issue, where my left eyelid is getting scaly and at the end of the week it got puffy and red around the eye. I have had this before, but with both eyes, to the point where it looks like I've aged 20 years--wrinkling, saggy, puffy lids. But it only has lasted about a day or two and has gone away, and this time it has lasted more or less all week through the weekend, it hasn't shown any signs of going away, and there is the added bonus of itchiness and redness around the outer eye and the scaliness has lasted a bit longer.

I am planning on going to a doctor about this and asking to be tested for celiac disease.

I am wondering if this could be related to celiac disease and/or ingesting or topically applying unknown gluten. I have not had problems with my makeup, the same kind I have been using for years, before. I did think I linked the problem last time to some new products I was using containing vitamin c in them, etc, but maybe not, since it is occuring YET AGAIN.

I am really bummed out about this since I am turning 37 this month and am already not psyched about aging. I don't want to age before my time, too.

Thanks for listening!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular
I am planning on going to a doctor about this and asking to be tested for celiac disease.

I am wondering if this could be related to celiac disease and/or ingesting or topically applying unknown gluten.  I have not had problems with my makeup, the same kind I have been using for years, before.  I did think I linked the problem last time to some new products I was using containing vitamin c in them, etc, but maybe not, since it is occuring YET AGAIN.

<{POST_SNAPBACK}>

I don't remember what it's called, but it's something that happens to people who don't have celiac disease as well - just an eye issue. But do see a doctor about it Monday, and if it's hurting as well right now, you might try to find a walk-in clinic today.

As for getting tested for celiac, you have to be consuming gluten (at the rate of 2-3 pieces of bread a day for three months) to have a decent chance of the blood tests not giving a false negative. (A biopsy on a gluten-free diet would also give a false negative once you had healed.)

Link to comment
Share on other sites
ryebaby0 Enthusiast

"I am really bummed out about this since I am turning 37 this month and am already not psyched about aging. I don't want to age before my time, too."

I'm not a doctor, nor do I play one on TV, but the works-with-children part of me says maybe you have pinkeye!

But your comment about turning 37 was what caught my eye: I am now 43, and when I turned 35 I thought I would just die -- all the usual feelings women have (and guys, too, I guess), etc., etc.. But looking back, I see now that it was very much like the moment when your snooze alarm goes off, and you say "okay, it's really time to get up now" and you do, and it's not so bad after all -- and at times, it is refreshing to drop the excuses in life and get down to work on ourselves. Many women deny themselves that opportunity until middlescence. You enjoy your birthday, and every day after it. They are gifts, so give them to yourself!

Joanna

Link to comment
Share on other sites
LauraZ Rookie

This is EXACTLY one of the things I experienced! At the time, I had no idea it was food related. The dermatologist just told me to put cortaid on it, but the problem was, unless I was putting cortaid on, it just kept coming back. For me, it was mainly my left eye and it was red, puffy, and crevassed. People in the stores looked at me like I was diseased. It was awful. It wasn't until I found a naturopath that pointed me down the food path that things cleared up.

Yes, this was definitely a gluten issue for me. It took about 6 weeks for it to fade entirely away. And as it was going away, because it had been swollen for so long, the skin was sagging around my eye. Which also had me concerned that I would always look this way, but eventually it tightened up, too.

Good luck, and keep us posted!

Laura

Link to comment
Share on other sites
Nicolette Rookie

This is definitely connected to the Celiacs. I've had this problem too, since having my last son two years ago.

It's called blepharitis and it s an inflammation and sometimes infection of your hair follicles around the eyes. The celiacs makes your eyes create more fluid, so the serum just keeps building up which creates scaling. You might also develop itching, swelling and pain, especially if you develop a cyst on the eye, as seems to happen to me often. These can burst on their own if you're lucky, but on both occasions it occurred with me, I had to have operations to remove them. It doesn't hurt and you only wear a patch for the day.

Unfortunately, once you start with blepharitis, it can also develop into general folliculitis, which is the same thing in any of the hair follicles anywhere on your body. You can also develop acne rosacea, another thing that happened to me. This requires antibiotics or a steroid gel on the skin to keep clear and is about a month long treatment.

These are all autoimmune responses and so is wrapped up in that wonderful parcel we call celiacs.

Link to comment
Share on other sites
LauraZ Rookie
This is definitely connected to the Celiacs. I've had this problem too, since having my last son two years ago.

It's called blepharitis and it s an inflammation and sometimes infection of your hair follicles around the eyes. The celiacs makes your eyes create more fluid, so the serum just keeps building up which creates scaling. You might also develop itching, swelling and pain, especially if you develop a cyst on the eye, as seems to happen to me often. These can burst on their own if you're lucky, but on both occasions it occurred with me, I had to have operations to remove them. It doesn't hurt and you only wear a patch for the day.

Unfortunately, once you start with blepharitis, it can also develop into general folliculitis, which is the same thing in any of the hair follicles anywhere on your body. You can also develop acne rosacea, another thing that happened to me. This requires antibiotics or a steroid gel on the skin to keep clear and is about a month long treatment.

These are all autoimmune responses and so is wrapped up in that wonderful parcel we call celiacs.

<{POST_SNAPBACK}>

Oh my gosh. I had no idea it actually had a name. And I googled it and saw pictures. After one MD, one dermatologist and a naturopath, I still didn't get this diagnosis, which is what I'm pretty sure it was, because my hair also did the oozing bit around the follicles. I had originally thought it was DH, but it didn't quite fit the pictures I was seeing.

Nicolette, what kind of doctor diagnosed this for you? I actually have tested negative on the blood test for celiac; I'm wondering -- can you just be gluten intolerant and get blepharitis, or does it go hand-in-hand with being a full-blown celiac? Curious if I should go for the Enterolab tests, which I hear is pretty much the gold standard...

Thanks for sharing!

Laura

Link to comment
Share on other sites
Nicolette Rookie

Anyone can get it, but those with autoimmune disorders can be more prone.

I originally saw my GP, but she referred me to a specialist because she had a concern that my cysts looked exactly like those of a basal cell carcinoma. Thankfully, she was wrong. The first specialist was an opthalmologist and the second guy was a specilaist in skin disorders (can't remember right now what they're called!)

Nicolette

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Threebrainedbeing Rookie

Thanks for the info. I am not sure it is what I have because it affects just the lid, not the inner eye or the lashes, but I am going to try the compresses, cleaning routine and massage (I found this info on google)

It did calm down finally and I've been much more stringent with the gluten. I am just going to have to keep watching it.

Link to comment
Share on other sites
jerseyangel Proficient

Hi TBB! I have what sounds like the exact same thing going on with my left eyelid. Its actually been happening for years and back when it first began. a Dr. told me it was eczema and prescribed a steriod cream and also said I could use a cortisone cream-otc. The only time it would go away (before going gluten-free) was when I used the creams. Since going completely gluten-free since June of this year, it is much improved but still comes back. I noticed a difference when I eliminated topical products with wheat and am now trying to use natural products with no chemicals as well. I find this approach, along with moisturizing, has been working so far--but I've thought that before and had it return, so I don't know. Mine is just the eyelid, with very itchy, flaky, rough feeling skin only on the left eye. My current GP said that it "looked like eczema" and to use a moisturizer. (I knew that much already <_< .

Link to comment
Share on other sites
swittenauer Enthusiast

Wow, we just thought it was allergies that made my husbands eyes get puffy & crusty. I never remember reading anywhere about it being a symptom associated with celiac. Does anyone have a link they can send me to any more info on this?

Link to comment
Share on other sites
Threebrainedbeing Rookie

Yes, Jerseyangel, that is exactly what is happening to me--exactly the same eye, too! It calms down but never completely goes away. If I watch my intake and don't wear makeup, it seems to be fine, but when I wear makeup, it seems to get a bit irritated, and worse if I wear makeup for several days in a row. I am really bummed out about it, honestly, because I want to look nice. I look great without makeup, but I'd like to wear it once in a while.

The reason I thought it was related to gluten is because both eyes have puffed out and wrinkled and aged me 20 years when I have cheated on the diet. No time to see a doctor right now but I am going as soon as I finish this job I'm doing.

Link to comment
Share on other sites
tarnalberry Community Regular
If I watch my intake and don't wear makeup, it seems to be fine, but when I wear makeup, it seems to get a bit irritated, and worse if I wear makeup for several days in a row.  I am really bummed out about it, honestly, because I want to look nice.  I look great without makeup, but I'd like to wear it once in a while.

<{POST_SNAPBACK}>

It sounds like you may be having a reaction to the makeup (celiac or not), and it may be best to avoid wearing it until you can both confirm the problem with your doctor and find a makeup that doesn't cause the problem. I'm sure you'll look just fine without it! (I work with a bunch of engineers... I'm not sure how many of us even own makeup... ;-) )

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,506
    • Most Online (within 30 mins)
      7,748

    NanaA
    Newest Member
    NanaA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
×
×
  • Create New...