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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Lip Swelling?
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12 posts in this topic

I got glutened a few days ago by an Amy's frozen dinner. I have heard of a bunch of cross-contamination issues lately. I got D almost immediately, along with brain fog, headaches, skin issues, etc. I also had the feeling that my tongue was too big for my mouth, which was something I was getting right before I went gluten-free. That went away after half a day though.

But the new thing is that now I've got a weird swelling on my lips. It's not the whole thing. It's kind of in the middle, but off to one side. It's not on the outside edge, but where my lips close together in the middle-ish. It feels almost like a burned sensation. I was thinking at first I was getting a cold sore or a canker sore, but there's not a sore developing at all. They aren't chapped or cracked. There's nothing that would indicate a bug bite or anything like that. Just kind of a swollen spot on top and bottom.

The only thing I've found on a websearch that seems related at all is food allergies. I haven't had allergy testing done yet, so I'm not sure if I have some sort of allergic reaction going on or what. But it would seem logical to me that if it were an allergic reaction it would be my whole lips, and not just the 20% I'm feeling.

I don't wear makeup very often (the last time maybe a week ago at this point), so I know it's not that. I don't even wear lip balm.

Anyway... I know I'm overdescribing this, but was just wondering if anyone had this as a result of being glutened or something like that.

Nancy

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Nantzie--I think I get what you describe when I eat something I'm intolerant to (not just gluten). The other day, I had a reaction from cornstarch. I had D for the rest of the afternoon, and now I have a tender spot on my lip--upper lip where it meets the skin on the left side. If I press it, it hurts, but there is nothing on the surface at all. They always last a few days, and go away. It does feel like either a breakout, or a cold sore starting, but nothing ever comes of it. Curious that someone else gets this.

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I'm allergic to lots of foods. Sometimes it does show up as a swollen spot on my lip - not the whole lip, just off to one side. It does subside on its own, but is annoying until it does.

Annette

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I get this too. Always the bottom lip and always in the same spot. Weird, huh ? <_<

At first I thought I was allergic / sensitive to salt because it was happening every time I ate salt.

Then I am thought it is only when I OD on salt. I love salt on my watermelon. But, that's not the case either.

On a lighter note, now everytime I see someone with large lips I wonder if they have food allergies :P

Marcia

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It's nice to know it's not just me. It seemed so odd that I wasn't sure I'd get any responses. Good to know it should be gone in a couple days.

Nancy

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This never happened to me before...today! It was either the Bumble Bar (which I believe to be the case), or some lip stuff I put on at the co-op. The reason I guess Bumble Bar is it didn't happen until I ate it. I used to eat them all the time, but I don't eat sugar anymore, and that has lots of honey and other stuff....and peanuts, which I also don't eat anymore. Still waiting for my food allergy panel to come back...wonder what it might be.......

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Yup - this happens to me ALL the time! It is always because I ate/used something I am allergic to. I have had it happen from makeup, Pizza Hut Pizza Sauce (a long time ago), and various other things. It is always on my bottom lip and always on the same side for me too!

My lip will actually swell up a bit too. Just this bump on the inside and a bit on the top/outside area. It is soooo uncomfortable and annoying but yes, does go away after a few days.

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I gave up gluten 2 months ago and about 1 month ago I developed a spot on my top lip that seems like a burn too. I'm so glad to have this board so that I know I'm not going crazy with all these strange things!

Since giving up gluten it also seems like my lips have shrunk (or are slightly swollen). I now feel like I have buck teeth a little. Like my lips won't close all the way when I relax them.

This is a strange disease :lol:

Mia

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Oh my gosh, I have dealt with the same annoying swelling on my lip off and on for years noIw. I've always wondered what it was from, I do bite my lips as a nervous habit, I always thought it was from that. I recently discovered that I am gluten intolerant and have an appointment scheduled for Celiac testing, as I've been having some major GI issues lately (bloating, and acid reflux so bad that sometimes it makes me want to throw up, along with eosinophilic esophogitis.) It's great to see that other people have the same lip reaction that I do, I never would have suspected gluten. interesting. and now I can hopefully prevent it, if it is caused by gluten.

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Dude! The same thing JUST happened to me. I ate the Amy's frozen broccoli cheddar bowl with extra fresh broccoli from whole foods and my lip swelled up like a balloon! I was about to go to the ER till I found this post! I was freaking out!. Now it's back to normal like 10 minutes later? I've never been diagnosed with celiac, but have had frequent D for so long I was trying this diet cause a friend told me to and it's working wonderfully. And I feel great and have no D.

Is this something in the Amy's frozen dinner, or something related to celiac? Ive had this happen before after eatting Amy's dinners but not as severe and its never happne ever till i went gluten free. This is weird. Any doctors reading this?

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My son has had this twice.  The second time we went to the ER and they kept him there overnight.  It did not respond to the standard treatment for allergy.  Finally they decided it wouldn't get any worse since it hadn't yet.  It got better slowly during the next day.  They mentioned hereditary angioedema and we had him tested for it but it was negative.  He got an idiopathic angioedema diagnosis.  In other words she didn't know the cause.  Could it be connected to celiac disease?  Both times it happened during a glutening.

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SAME PROBLEM

I have had two episodes of significant (unable to close my mouth to drink) swelling of just the right lower lip, both of which happened with severe glutening (yesterday from regular bread presented to me as gluten-free at a restaurant).  It was accompanied by the itchy painful spots of dermatitis herpetiformis about 12 hours earlier, and about 24 hours after my meal.  As a physician, I am interested in describing this lip swelling as a marker of celiac disease.  Would anyone be willing to share their stories and/or pictures for a case report in the medical literature?  You can email me privately at crystal.lumi@yahoo.com.

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