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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Eye Swelling And Crusting--help!
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12 posts in this topic

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!

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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.)

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"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

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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

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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.

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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

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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

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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.

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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 <_< .

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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?

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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.

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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... ;-) )

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