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

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!


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.)

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

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

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.

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

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


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.

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 <_< .

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?

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.

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... ;-) )

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. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

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

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.