I had idiopathic urticaria for years; it finally seems to have gone away.

In my case it wasn't totally idiopathic; I had a nasty fall down my basement stairs and the hives started out at the injury site (I had a hematoma the size of Cleveland!), and then branched out.  They theory was that my immune system had "turned on" in response to the damage from the injury, and then couldn't turn back off again.  I needed to take Claritin 365 days/year for about 13 years.  I can now skip several days at a time without a problem (assuming my seasonal allergies are under control, which they aren't right now  ).

My son had a similar issue when he was 4; he got some weird virus and got viral hives.  They continued on and off for years, and at one point he developed cold urticaria as well.  Both eventually went away, but it was a long haul.  Good luck figuring it out!

My sister gets huge stress hives. It was especially bad around exam time when she was in college. No trigger other than stress as far as they were ever able to determine.

Thank you all so much for the replies, very helpful!!

The rash has gone down now--literally nothing has touch my lips and the surrounding skin except vaseline the past 4 days (besides food). I'm pretty sure I was reacting to something in my CeraVe lotion, some foods, or a combination of both. I think my skin and body just needed a rest!!

So far I am doing an elimination diet and have cut out:

- gluten (I was doing this before, but am now stricter)
- dairy (I was doing this before, but am now stricter)
- soy (and all of the names it hides behind!)
- eggs
- alcohol
- all processed sugar
- nightshade vegetables
- all fruit, except bananas

My basic diet looks like this:

- coffee with basic "creamer" (Nut Pods brand, unsweetened <-- seriously, who named this product?!)
- Simple Mills Sea Salt Almond Crackers
- Plant Snack cassava root crackers
- Rice cakes
- Almond butter
- Bananas
- Carrots
- Vegan Ranch (Primal Kitchen brand)
- White rice
- 100% grass-fed beef
- Wild-caught salmon
- Garlic and salt for seasonings

Super simple and not maintainable for the long-term...but honestly it's not too bad and I don't miss sugar as much as I thought I would. I'll do this for a couple weeks and slowly start adding things in, one at a time over the span of a few weeks. It feels really good to be eating mainly whole foods.

I was reading up on it, and I was wondering if maybe I have a sensitivity to salicylates--looks like I have most of the symptoms...so I've cut out foods high in that as well. That's new term for me, so I don't know how much weight it would actually hold. And if "salicylate overload" is an actual real thing, lol.

I'll try to remember to keep updating in hopes that it would help someone else who has something similar, because God knows I've had a tough time figuring out what this is!!

Note: The only thing that makes my lips flare up now is crying/emotional upset...I had a tough weekend  . A few months back I was diagnosed (gosh, sounds so serious) with autoimmune idiopathic urticaria and angioedema, which basically means I have chronic hives and swelling that they are unsure of the cause. I guess it's possible to be "allergic" to crying, overheating/sweating, and sun exposure. how insane is that?! Does anyone else have this issue? It is a different kind of swelling than I experienced this last month...but man. Crazy stuff.

Welcome!

I wonder if it the acid in the fruit that is irritating your already inflamed skin?

I hope you can figure it out and get your skin to calm down. 

If you are okay doing a limited diet like that and introducing foods slowly, it will help you come up with a more accurate list of trigger foods. Many people start out with plain white rice and plain chicken, and then add in safe vegetables every few days. Once your body has had some time to rest and recover without reaction it will be more accurate at telling you what the problem foods are. Keep a journal of what you eat and any symptoms, and bring it to your allergist once you see a pattern, or if there doesn't seem to be a pattern they may identify some correlated foods you may not have thought of.

Hi Rebekah,

Thank you so much for the reply!

I've thought about OAS and I'm not sure if it applies to me (I've had skin-prick tests done for environmental allergies and I have none). But you've sparked something in my mind--I've heard of cross-reactivity in certain foods. I know I'm allergic to blueberries, so maybe some foods I eat that cross-react with blueberries and give me a reaction? There are quite a few fruits I eat regularly (raspberries, prunes, grapes) that contain a certain protein similar to blueberries. I wonder if that's it.

So...I guess I'll just add all that stuff to the list of foods I can't eat, yippee!

Today, I'm trying to slowly add foods in one at a time to see if I react...so far I can safely eat rice cakes, coconut/cashew butter, pecan milk, and Simple Mills almond crackers. I surely cannot live off of that forever...

ANY other input anyone has is so appreciated!!

Hi Madison and welcome! 

I'm so sorry you've got this mystery going on.  I've never heard of anyone having a similar reaction though I have seen several people who seem to be reacting to everything but once they figure out what the real culprit is and eliminate it the 'every time I eat' reactions go away.  Maybe that's what's happening to you - whatever you've developed a reaction to is keeping your body on high alert so it's reacting to everything?

Another thought... Do you have pollen or environmental allergies?  Perhaps you're having oral allergy syndrome where your body is mistaking foods you're eating for a pollen you're allergic to and causing oral symptoms.  Common culprits for OAS are melons, bananas, avocados, tomatoes, apples, pit fruits, etc.

And another...  My kids always had symptoms around their mouths when they were little and ate things like ketchup, ranch, toothpaste on their skin, etc. and it was just from sensitive skin and not allergy.  I've recently had that happen when I used a cinnamon mouthwash and some dripped on my chin.  Maybe something that's touching around your mouth is causing irritation and then eating adds to the irritation.

No matter what the cause, skin irritation can be a viscous cycle where it's almost like the irritation causes more irritation and can be tricky to get fully healed.  You may need steroids or other medication to help with that.  For now, I'd suggest taking Claritin or Zyrtec daily and maybe even Benadryl at night to see if those help.

I hope you figure out what's going on and can get it stopped soon! 

Hi guys, new here! It's pretty refreshing to read some posts and know I'm not alone on this food allergy journey.

I've had allergy testing done recently, and the only thing they told me I was allergic to was blueberries (only mildly allergic). I suspected a soy allergy about a year ago, since my mom has a soy allergy and I kept having the same reaction she did (dry skin and swelling around mouth). Up until this past month, I'd have a reaction maybe once every month and it would heal within a couple days. Same process -- red and inflamed lips and skin around mouth, itchy, stinging...and then when the swelling would go down a few hours later, I'd have to deal with super dry, scaly, peeling lips and skin around mouth. Not life threatening but not fun.

For the better part of the past month, I've started reacting to literally anything I eat. Doesn't matter what it is--even if it was previously a "safe" food--my lips swell within seconds of eating it. The swelling will go down within 30 minutes - 1 hour, and then the dryness starts.

I've had a bit of success using Portland Bee Balm, which has very minimal ingredients (Pacific NW Beeswax, Organic cold pressed extra virgin coconut oil, organic California extra virgin olive)  oil). I've also started using CeraVe Daily Moisturizing lotion on my face and around my lips...this seems to keep the skin more hydrated and you can't see the flakiness.

The past few nights I've been putting coconut oil on and around my lips, followed by CeraVe and the lip balm. I've woken up with almost normal-looking lips...but they go downhill once i eat anything.

I went to the Dermotologist yesterday, who told me to stop using what I've been using and start using Vaseline on and around my lips, and VaniCream lite for my face. I think the Vaseline is fine, but I think the Vanicream caused a reaction (started using both at the same time so I don't know for sure--dumb, I know).

Anyways, has anyone experienced anything similar to this? I don't think I've found a single thing online that would help explain what this is...I don't lick my lips at all but the rash around my mouth looks like lip-licker's dermatitis.

I should note that I also have Celiac disease and am severely lactose intolerant--I avoid but gluten and dairy like it's the plague. I'm thinking I could be having a chemical reaction but I have no idea to what. PLEASE HELP!!!