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Lip Swelling?

Nantzie

By Nantzie
in Coping with Celiac Disease

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Nantzie Collaborator
Nantzie
Posted

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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jerseyangel Proficient
jerseyangel
Posted

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.

nettiebeads Apprentice
nettiebeads
Posted

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

marciab Enthusiast
marciab
Posted

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

Nantzie Collaborator
Nantzie
Posted
  • Author

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

BRUMI1968 Collaborator
BRUMI1968
Posted

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.......

Kirian Rookie
Kirian
Posted

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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Mia H Explorer
Mia H
Posted

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

  • 6 years later...
dtobi Newbie
dtobi
Posted

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.

  • 2 months later...
Psychosubmariner Newbie
Psychosubmariner
Posted

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?

dilettantesteph Collaborator
dilettantesteph
Posted

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.

  • 3 years later...
crystallized11 Newbie
crystallized11
Posted

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.

  • 1 year later...
Justjudi1 Newbie
Justjudi1
Posted

Recently I have experienced itchy palms, small hives and only part of my lip will swell.  Today, it was only a small part of my lower lip that swelled without the other symptoms.  I took an over the counter allergy med (not benedryl, it knocks me out) and it brings down the swelling fairly quick.  I am seriously considering allergy testing.  Is it expensive?  Thanks to everyone who posted.  Such a weird thing when only part of one lip swells, good to hear others' experiences.

  • 1 year later...
Wendy Purdie Newbie
Wendy Purdie
Posted

I have recently had the weird lip swelling as well!!! First it was the upper left and my tongue, I went to urgent care and they treated as allergic reaction. Took about a day to go away. Then it happened again, upper right lip, I thought it was fabric softener, (I’ve also had the itchy hive on my knees) I’ve now figured it was from the gluten ??‍♀️.. seriously?!?! I was diagnosed with celiac a few years ago. I got a little lazy on ready labels thinking I was a pro.. I bought a generic cereal and it had gluten.. this was why I’ve been breaking out. (Rookie move I know)  but now every time I get any gluten I get a hive on my knee and sometimes the lip swelling.. anyone know why this is happening? I want to have allergy testing done, but with all this covid stuff going on, not doctors priority.  Any advise?? Yes I know no gluten. ?

Wendy Purdie Newbie
Wendy Purdie
Posted
(edited)

Do you have an update on your lip swelling? I’ve had this issue recently as well. Thought I was having an allergic reaction. But have now traced to gluten ??‍♀️ Wanted to know if you figured out anything before I do my teledoc appointment on Tuesday.  Hopefully my Dr doesn’t think I’m crazy 

Edited by Wendy Purdie
Wendy Purdie Newbie
Wendy Purdie
Posted
(edited)

What allergy medicine did you take that wasn’t Benadryl? I’ve had the same lil swelling issue as well. Benadryl doesn’t do much for me

Edited by Wendy Purdie
Scott Adams Grand Master
Scott Adams
Posted

Hi Wendy, welcome to the forum. This thread was originally started back in 2006, which is when most posts were made, so it’s doubtful the original posters will respond.

it sounds more like an allergic response to something you ate, rather than a typical celiac response to gluten. Perhaps you have an allergy to wheat or other food as well? You may want to get food allergy tests done to find out the cause of your reaction because an allergic reaction that is bad enough to cause lip or throat swelling could be dangerous, especially if you’re not sure what triggered it.

Wendy Purdie Newbie
Wendy Purdie
Posted
On 8/2/2018 at 7:19 PM, Justjudi1 said:

Recently I have experienced itchy palms, small hives and only part of my lip will swell.  Today, it was only a small part of my lower lip that swelled without the other symptoms.  I took an over the counter allergy med (not benedryl, it knocks me out) and it brings down the swelling fairly quick.  I am seriously considering allergy testing.  Is it expensive?  Thanks to everyone who posted.  Such a weird thing when only part of one lip swells, good to hear others' experiences.

Thank you Scott.. it was a shot in the dark. I have an appointment in Tuesday. But only video appointment. Hopefully they can get me in for testing. I ate out once yesterday and that’s the only thing I can trace it to.  Who knows though, we change as we get older ?

cyclinglady Grand Master
cyclinglady
Posted

Celiac Disease falls under the umbrella of hypersensitivity.  There are four types and they can be interrelated.  This Wiki description is very simple:

https://en.m.wikipedia.org/wiki/Hypersensitivity

For me, when I am exposed to gluten, my immune system ramps up.  Everything goes crazy.  All three of of autoimmune disorders flare up.  Mast cells are activated and I swell (especially face, tongue, eyes) and get hives, thousands.....  My primary mast cell activators are insect stings and medications like NSAIDS or even acetaminophen.   Easy to avoid.  I have also struggled with chronic hives which have lasted for six months.  All because of a gluten exposure or even a virus or infection.   

Avoiding gluten at all costs is my mantra.  I do not eat out, except at dedicated gluten-free restaurants and I avoid processed foods as much as possible.  My third autoimmune disorder?  Autoimmune Gastritis.  That developed after my last hidden gluten exposure.  I want to avoid a fourth!  

  • 5 months later...
nikicumming Newbie
nikicumming
Posted
On 4/26/2020 at 9:47 AM, Wendy Purdie said:

Thank you Scott.. it was a shot in the dark. I have an appointment in Tuesday. But only video appointment. Hopefully they can get me in for testing. I ate out once yesterday and that’s the only thing I can trace it to.  Who knows though, we change as we get older ?

48yo female, Celiac and otherwise healthy and active. I had massive lip swelling a month ago, which left them very chapped and painful and burned feeling - originally we thought an allergic reaction to dinner out the night before but later figured it must be gluten XC and we now think it was a mini cytokine storm. A few nights during that time I felt like I was having a heart attack and wound up in emerg, they gave me dexamethasone which helped bring it down for a day but it kept happening. I have an apt with an allergist this week just in case, but after avoiding anything that flared it up (tomatoes, wine, gluten-free oats, my usual lip balms) things finally calmed down. My GI doc suggested awhile back that I eliminate oats which I did, forgetting about my beloved oat milk! Coincidentally my thyroid was hyper, now normal, being monitored in case it goes hypo and could be another autoimmune brewing. Naturopath wants me to follow the AIP diet for 6 weeks to attempt a reset so that’ll be happening soon. Curious how your testing went and if it’s happened again at all. 

  • 1 month later...
lizza johnson Newbie
lizza johnson
Posted

I also suffering from this 2 years ago then my doctor suggest me to use Carmex lip balm. It's gluten free product and you can see the results within a week. I also suggest it to my aunt and its also help her. Hope this also work for you..!!

  • 2 weeks later...
nikicumming Newbie
nikicumming
Posted
On 11/3/2020 at 10:04 PM, lizza johnson said:

I also suffering from this 2 years ago then my doctor suggest me to use Carmex lip balm. It's gluten free product and you can see the results within a week. I also suggest it to my aunt and its also help her. Hope this also work for you..!!

Thank You Lizza!

  • 11 months later...
Bethany Aldsworth Newbie
Bethany Aldsworth
Posted

I recently had an reaction to gluten free fish and chips, not sure whether this is a new fish allergy or if it’s a new wheat reaction. Waiting for results from GP. So interesting to see other people have had the same

trents Grand Master
trents
Posted
1 hour ago, Bethany Aldsworth said:

I recently had an reaction to gluten free fish and chips, not sure whether this is a new fish allergy or if it’s a new wheat reaction. Waiting for results from GP. So interesting to see other people have had the same

What kind of reaction? Did your lips swell as described by the original poster in this thread or something else.

Bethany Aldsworth Newbie
Bethany Aldsworth
Posted
42 minutes ago, trents said:

What kind of reaction? Did your lips swell as described by the original poster in this thread or something else.

Yeah my lips swelled up, the left side more. 

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