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Lip Swelling?


Nantzie

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Nantzie Collaborator

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

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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nettiebeads Apprentice

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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marciab Enthusiast

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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Nantzie Collaborator

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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BRUMI1968 Collaborator

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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Kirian Rookie

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

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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  • 6 years later...
dtobi Newbie

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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  • 2 months later...
Psychosubmariner Newbie

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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dilettantesteph Collaborator

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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  • 3 years later...
crystallized11 Newbie

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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  • 1 year later...
Justjudi1 Newbie

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.

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  • 1 year later...
Wendy Purdie Newbie

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. ?

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Wendy Purdie Newbie

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
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Wendy Purdie Newbie

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
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Scott Adams Grand Master

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.

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Wendy Purdie Newbie
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 ?

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cyclinglady Grand Master

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!  

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  • 5 months later...
nikicumming Newbie
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. 

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  • 1 month later...
lizza johnson Newbie

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..!!

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  • 2 weeks later...
nikicumming Newbie
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!

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  • 11 months later...
Bethany Aldsworth Newbie

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

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trents Grand Master
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.

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Bethany Aldsworth Newbie
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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    • 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.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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