Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)


My name is Claire. I live in Cincinnati, OH.

I found out i have a disease called Cold Urticaria (CU or Cold Contact Urticaria.) I found out that I had it about 4 years after my symptoms started showing up. I first noticed my hives when i went swimming in a pool for the first time in years.

I got light headed, hives all over my body, and my body burned. I can’t eat ice cream, can’t drink cold drinks, i can’t even help my mom bring the milk in from the car because it’s to cold.

I have to stay away from anything cold and living in Cincinnati makes it pretty hard. There is one foundation for this disease and it has really helped me but we need to get the word out because every medication the doctors have put me on, so far, don’t work.

I’ve had this disease for about 16 years. I hate living in fear. Knowing that i could die just from walking in a building with air conditioning scares me. I’m only 18 and I don’t want to live in fear from day in and day out. We need help.

Do you have Cold Urticaria (CU or Cold Contact Urticaria)? Make sure to leave a comment to connect!

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Global Genes Comments

  1. 2xurtcaria says:

    Hi! I have developed chronic Urticaria twice so far. I believe they were both drug induced cases. The first I was in my early twenties and was bitten by a dog and received a tetanus shot and ciproflaxin. Immediately I broke in hives shortly after taking the medications and got hives when exposed to sunlight/heat/pressure. This lasted for 3+ years and gradually disappeared. The most recent was 2 years ago I had another viral illness (although the doctor was not certain if bacterial) I had high fever etc. I was prescribed bactrim and immediately started having reactions. I now have chronic urticaria to the cold. I can’t say for certain if it was the bite/illness or the drugs but something that happened on those days caused the chronic hives. I live up north and always prepare for my skin being exposed. I understand the limitations this puts on one’s life
    as I always have to think about what triggers them. I stopped asking doctors about this a long time ago because I usually get the typical” I’m not sure, maybe try this doctor” and “I don’t think it’s the medicine”. We know are bodies and when something changes that drastically it is life altering and it would be helpful if someone in the medical field had knowledge. I hope someday that someone will be able to treat and identify what causes this condition.

    • Kristina Cindric says:

      I wish I could enjoy the outside air while it’s snowing without all these problems related to CU. Have it for almost 20 years now and getting tired of those boundaries. I don’t even enjoy summer like I used to because I’m craving for a day of winter in peace.

  2. Shellie Stewart says:

    Hi. i’m Shellie. I am 44 years old and yes, I have CU. I live in North Texas. The first time I ever had a break out of hives was when I was 15 years old. I jumped into a natural spring and the water was soooo cold. When I got out, my entire body was covered in hives. Everytime it happened after that, my mother would rush me to the doctor but by the time we got there, the hives were gone. lol I went to numerous doctors and dermatologists only to be told I was crazy basically and no one is allergic to the cold. It wasn’t until the internet came along that I realized I wasn’t alone. I’ve learned to avoid triggers the best I can. There have only been three times in the past 30 years that I had almost gone into shock. Sooo wish they would come up with a cure and I would love to know what causes this!

  3. Tiffany P says:

    I have cold urticaria as well and have had a few symptoms for years but only noticed it this past year. I started breaking out in hives on my hands when we’d get into the car. Once my body warmed up from being in a small car with 4 people I’d break out on the tops of my hands. I couldn’t figure out what it was so I did some research. After finding out about cold urticaria I went to see my allergist. She confirmed it and told me the reason I would break out in the car is because the minute my body started to warm up from being cold, it would react. It’s gotten quite worse since then. I can’t hold drinks that have been in the fridge. It’s extremely painful. Rain and cold nights suck. Thankfully I live in southern California in the inland empire where it’s usually warm, but we have a few cold months where it gets pretty cold and I have to bundle up from head to toe. I’ve noticed if it’s under 70 F I have to dress like it’s raining outside. Just getting a bit of a chill makes little red dots start to gotten on my hands and arms and sometimes my neck. I own leg warmers, fingerless gloves, and a very warm jacket. People call me crazy but they do not understand. Lol. I run cold as it is, being on the small side. I’ve heard about that lotion that people use to keep their skin earn and I’m looking into it for the winter months that are ahead. It’s raining here today so I’m wearing leggings under my jeans so my legs don’t start to sting.

  4. Tyler Dooley says:

    I have had CU for about 16 years and I just got diagnosed with it about 5 months ago. I live in Anchorage, Alaska. When i first started getting hive from it, my school nurse would put Ice on it. My parents always thought that I got frostbite regularly. When I go to college people don’t understand why it’s 50 degrees and I have a winter coat and gloves on. I have never heard of CU until my diagnosis. I’ve started to notice that I shouldn’t eat or drink anything ice cold.

    • Allison L. says:

      I do think I still have it, but definitely not a severe case. I was still able to go swimming at school with only a little bit of redness in the chest area.

    • Allison L. says:

      Whoops, didn’t mean to reply to your comment xD. I meant to reply to mine.

    • Hey Tyler, what helps me during winter season is 24 hour Allegra gel caps. They work miracles. It makes a big difference and I’m able to go outside in cold temperatures. Give it a try and you’ll see a big difference.

  5. Allison L. says:

    It’s Allison, again. I did the ice cube test on my legs. (I put an ice cube in a Ziploc plastic bag on my legs for 2 minutes). Both of my legs were negative. So could it be possible I only have CU in my arms and face?

  6. Allison L. says:

    I think I might have Cold Urticaria, but I’m not entirely sure. What made me really question if I have it or not, was 2 days ago whenever I was in a car with the windows rolled down. The cold air was blowing in my face and on my arms, and whenever I arrived at home, my face was red and so were the exposed parts of my arms. There were little bumps on the parts of my arms that were open to the cold air, and there was a yellow/white color around my eyes, nose, and mouth, but the rest of my face was red. The bumps on my arms were itchy for maybe about 1 minute while I was in the car, but the itchiness went away. My ears started to burn whenever I entered my home (which usually happens whenever I’m out in the cold with my face a flushed red). I thought that it was strange, so I looked it up on Google. Then, to my horror, Cold Urticaria pops up. I got really frightened, thinking of how it would affect my life, but the symptoms aren’t serious at all (at least I don’t think they are). I am still able to eat ice cream and drink ice cold drinks without my throat swelling. I did the ice cube test, where I put an ice cube on my forearm for a few minutes, and there were bug-bite like bumps on the area surrounded by red. They didn’t itch, burn, etc. It was just there and went away after about 30 minutes. I also had another symptom a while ago, where I was holding a cold drink, and my thumb swelled up pretty bad, but I’m pretty sure it was before I went to Las Vegas (where I swam at a water park). Nothing happened after I came out of the water. No hives, no itching, no burning, nothing. So I’m curious if I have CU or not, and even if I do, I don’t think I have a severe or even, moderate case of it. I’m still worried though, because I have to swim at my school on Monday as apart of P.E.

  7. My daughter’s 12,and was diagnosed Feb of this year although she’s had it for 8 years. Her reactions only ever happened in the summer until this year. I’m not sure there’s any correlation, but she contacted Lyme disease last summer – I’m blaming that for the increase in severity. We live in Massachusetts, so it’s not easy to avoid cold temps here, either.

  8. Hi, I am a 45 year old living in Madrid, Spain and I have recently developed what is specifically called Acquired cold urticaria (ACU). It started in August 2016, which is the warmest month of the year in Spain. I was very confused to start with and I spent a lot of time trying to investigate, but not much is know on this particular allergy. However, I was told by another sufferer that they were asked in they had been ill with a virus or had been stung by an insect before the allergy began. Wow, I thought, I had received a particularly aggressive wasp sting just days before the allergy started, but had not associated it until it had been brought up. IS IT POSSIBLE THAT MY ALLERGY WAS CAUSED BY A WASP STING? From what I have been able to see just by googling, there seem to be several cases associating the alley to a sting, but no particular proven study or specific illness that can even be explained to a doctor. This makes it quite frustrating for me and thus I would like to find out more of these specific cases “Acquired cold urticaria (ACU) from bee or wasp sting”. My ACU is especially sensitive. As in most cases, toughing anything cold, or bathing in cold water will effect me, but it doesn’t have to be too cold, tap water at 22 degrees celsius is enough. Even air temperatures of 22 degrees is enough for me, so I can’t even do a 10 walk in springtime without getting the itchy rash.
    – It takes just a few seconds of exposure to the “cold” to cause a reaction.
    – The first symtoms appear in just 30 to 60 seconds.
    – The Ice cube test was severe after just 60 seconds contact with my skin.
    – Symptoms disappear after around 20-30 minutes.
    – Especially sensitive hands, feet, ears , nose (nostrils) and around the mouth, but basically anywhere that receive the cold stimulus.
    I am taking two different antihistamines daily, but with no difference to the condition. I am in the early stages, so still doing tests and seeing specialists, but in the meantime, I would love to hear back from anyone with this specific allergy “Acquired cold urticaria (ACU) from bee or wasp sting”.

  9. Val Suera Dravecky says:

    My daughter who is now 8 suffers from CU. It is very frightening. She always has a sweater or blankets in the car with me. When we go to the grocery store she needs to put on a sweater when we are near the coolers and freezers. In school she has her sweater all the time and once it’s under 50 degrees she stays in from recess. She hasn’t been in a pool since we found out. In the winter it’s snowsuit time to go from the house to car than into school, the joys of living in Chicago. She misses out on so much, between CU, seasonal allergies,peanut allergies and asthma, and it breaks my heart for her. Luckily she is a very strong girl and deals with everything that has been thrown her way with a smile. I couldn’t be more proud of her.

  10. I live in Montreal, Quebec in Canada and I seem to have developed CU after getting stung by a wasp. Symptoms started about 10 days after the sting, I started noticing tingly and itchy fingers when I would hold my iced coffee. Long story short, when I made the link that it was the cold, I started researching on internet. I still have trouble believing what is happening to me. I went jogging wearing shorts the other night for 20 min. and came home to see hives on my thighs and it was just a bit cool, maybe 60F… I am not sure what is going to happen to me in the winter when it will be more like 5F! I am sure some people would not even believe it if you tell them you are allergic to the cold, right? It sounds crazy…. until you are suffering from it yourself! 🙁

    • Kristina Cindric says:

      Exactly.. even after 19 years that I have it, people still can’t believe my words, neither their eyes when I tell them that I have CU. I would have less questions to answer if I just told them that I drank too much and broke out in hives for that reason. Sounds crazy , but nobody is ready to hear things about they just can’t accept.

  11. I’ve only had CU for three or four years, but my reactions have increased in severity recently. My first incident was just hives on my hands from working the front door at a polling place on Election Day. But then in the past few months I’ve been unable to breathe the cold winter air while waiting for a bus, and in the past two weeks I’m finding that it feels like my throat is starting to close up whenever I have anything frozen like Italian ice or ice cream. I’ve had other allergies suddenly get worse as well, and it’s honestly really scary because I don’t have a solid idea of what’s safe for me anymore.

  12. Rebecca Nelson says:

    I’ve had CU for almost 30 years now (about 3/4 of my life). I react at 72 degress and below. I grew up in So. Cal. having to always carry a flannel shirt with me into the air conditioned buildings in the summer. Now I live in Montana and spend a good hour outside in the snow every day during the winter for my job. The first couple times reacting to cold temps were the worst because I didn’t know what was happening and therefore let myself get cold enough to develop anaphylaxis. Since then, I’ve learned my limits and what I need to do to stay warm – at least to protect my core from getting too cold. Good jackets, camis, leg warmers (try them!! They help SOOO much!), cute gloves without fingertips…. Figure out what works for you. For me, staying warm at the wrists and ankles (so the blood going back to my heart stays warm) makes a noticeable difference.

    Don’t live in fear. This condition is irritating and can be dangerous, but warming up relieves the symptoms (unlike some who react to food ingestion or bee stings – that’s internal and way more life-threatening). Always have warm clothes with you, even if it makes you feel silly to tote along a lightweight jacket during the summer. Know your limits. I didn’t let CU keep me out of water (the Pacific Ocean, lakes, rivers, pools…) – I just got out and warmed up when I started to get itchy, and I always had a friend or family member with me. The more body surface that gets hivey, the greater chance of a blood-pressure drop that could knock you out, so body awareness is really the key.

    I discovered (as someone mentioned above) that Allegra helps keep the hives away when I take it daily for at least a week. This summer I was able to white-water raft in cold snow-runoff water without getting hives because I’d been taking it. I even had me feet in the water the whole time. Once I stop taking Allegra, I get hives again.

    Hope you find a combination that works for you and that you’ll grow out of it, as some very lucky people do.

    • Eve Graves says:

      Hey thanks for sharing..Warmskin will also help out, it’s kinda like vaseline or dermatone but works better and is like a lotion, NFL players use it and those with CU have also had great success…it’s much easier too! Lungplus will also keep you outside much longer as it warms your entire body!

      • Hi all , I have had CU for over 30 years and it was so annoying as I love water sports!! Do you all know that Mast cells cant keep on reacting. They deplete once you have had a massive reaction or constant reactions. Then they take 24 – 36 hours to build up chemicals again. So once you deplete them, if you deliberately get cold every 24 hours, you just get a little reaction and not a fearful one. This is helpful to know, so you can participate in cold water events, if you do the preplanning. This method isnt a cure sadly just assistance to be able to participate if you really wanted to.

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