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!

Filed Under: Uncategorized

Tags:, , ,

Global Genes Comments

  1. Stephanie says:

    My 20month old was just diagnosed a couple weeks ago. He started getting hives on his hands when he would eat cereal with cold milk. At first we thought it was a food allergy because he is also allergic to eggs. Then we went on vacation and swimming in the lake caused his whole body redness and hives all over. Benadryl helped that day and after seeing our allergist we got the official diagnosis. Our allergist didnt believe me at first because hes never had a patient this age test positive to CU. Now we’re just taking it day by day and praying he outgrows it! Today his tears made him get hives while in the air conditioned house 🙁

  2. Hey! I live in AZ. When I found out I was allergic to the cold I believe I was about 12 or so and lived in Maryland. I came in from playing in the snow one day and my hands were so swallon. Still have it and 31 now. None of my family has it and most people don’t even believe me when I tell them. Hoping one day it goes away and really hoping my baby doesn’t get it.

  3. I have had it since I was about 10. I’m now 37 and it got better once I was in my teens. I would break out in hives all over from the snow. Back then people would laugh when I told them I was allergic to the cold. The doctors really did not have answers. But me and my family knew it was due to the cold. I have had many scares too. I first noticed the scary symptoms while swimming. I threw up, and got really weak. When I was 13, I went swimming and fell on my face because I passed out due to being weak and theyvalled an ambulance. My body was shutting down.
    This was not the last scary incident either. So you’re not alone. It feels so scary too.

    My symptoms after swimming in cold, cold water -nausea, weakness, blurred vision, cramping in belly, blood pressure drops. It feels like death is right there.
    I have not had a scare since I was 23. I just avoid cold, cold swimming pools. It has to be super cold like ice, if that happens I’m in big trouble. Those around me know to call 9-11 fast.

  4. Katherine says:

    Wow, I am so sorry you all are dealing with this. I had a terrible reaction, completely out of the blue, about 15 years ago, when I went swimming in the ocean to retrieve something I’d dropped off our boat. I was about 50, had been swimming all my life, lots of it in cold water, and had never thought twice about it. By the time I made it back to the boat, I thought I was going to die – the nausea and complete systemic weakness, with swelling all over. I could barely speak but I sent my daughter off in a rowboat to get benadryl. It took me nearly an hour to recover. I really didn’t know what I was dealing with – everyone said hypothermia, but the symptoms were wrong, as you know. But I started to get hives when holding cold things and finally figured it out. I guess I am really lucky, because after about a year or so of having to avoid contact with cold items and stay out of the water, the urticaria faded away entirely. It’s good to know others are aware of this, but I wish it would fade away for all of you too.

  5. I found out I had CU when I was 16 and am now 21. I can drink cold things, but my tongue does swell up when I eat cold things. I can’t go swimming, be outside when it’s windy, etc. I started Xolair shots in Feb of this year and they have helped tremendously with my CU. Yesterday I went in a lake for the first time in over 5yrs. I got minor hives after being in for and hour. My body is immune to over the counter allergy pills from taking them everyday for how many years. Anyone that’s has CU, I would HIGHLY recommend talking to your allergy doctor about looking into the Xolair shots. They are spendy, you get one shot in each are that comes out to roughly $3,300 each appointment (2shots) but Xolair DOES of a program that you have to apply for for financial help since they are so spendy. My shots get done once a month, my CU is pretty severe, but it all depends on what your allergy doctor recommends!

  6. Hi! Trying to figure out if my 9 yr old daughter has this. She doesn’t get the hives but she can’t play in the sprinkler or at the beach because her hands and feet start to hurt (burn, itch, swell, and get her red). Do you always get the hives with this condition? Thanks for any feedback!

  7. I’m 25 and have had it since I was about 3, it’s actually hereditary and since a few people in my family have had it, it was easy to detect. As a matter of fact my younger sister developed it as well when she was about 16, we do think however she has grown out of it. It’s not as severe as it could be for me. I can drink cold drink and eat ice cream. However, I have noticed that if ice cream is extremely cold I do breakout on my lips. If I don’t take the right medicines that I’ve found helps me, I can’t go swimming or do anything else that will make my body feel remotely cold for too long without breaking out. Swimming is a big one though as I too have gone into shock when I was about 6. This was before we were able to educate ourselves a bit more to know that we had to take extra precautions. All of my family is well aware even now to keep an extra eye on me when we’re in water. The best remedy that I’ve found is taking 1 loratadine (claritin) I use the generic brand since I use it so often and it’s cheaper and I when need extra help like when I swim or during the winter when I know it can get really bad I take 1 loratadine and 2 fomatidine which are just over the counter acid reducers. I don’t know what it is about that combo but I’ve been using it for the past 7-10 years, a doctor told me once to try it and let me tell you in helps. I don’t worry when I swim that going to break out, I’m able to enjoy winter a little more instead of being miserable. However I due use the term winter lightly since I do live in Texas and we only get about a 2-3 week “winter”. Well, I hope this info helps someone!!

    • You should look into mast cell activation disorder or mastocytosis. https://tmsforacure.org/
      For the family in Montreal there is a Pediatric allergist/immunologist in Montreal @ McGill whose area of specialty is chronic urticaria. In Canada xolair can be covered by provincial health insurance.

  8. Véronique says:

    Hi Claire! I live in Montreal, Canada, and found out a couple of months ago that my second son (out of 3) is suffering from severe cold urticaria, just as bad as you do… We got the diagnosis confirmed yesterday and came back home with an Epipen but I just can’t support the idea that he’s gonna have to deal with this his entire life. I just can’t. I got to find a solution. Please let me know if you hear of a new study, treatment, etc… He’s only 10 and I’m struggling with the idea that one day he could suffocate from drinking a simple glass of juice. Last winter was terrible here, with temperatures often falling to minus 30-40 Celsius. He would wake up almost every morning with stomach ache and /or headache and as a result missed a high number of schooldays. Summer is terrible to cause in these days of heatwave there’s no way to refresh him. To this day it was still possible for him to drink cold liquids or eat ice cream and all but recently he got pain in the chest and a little difficulty with breathing for about 15 minutes after drinking a juice out of the fridge, so we got told that this could potentially lead to anaphylaxis really fast in the future and that it was recommended to avoid everything that’s cold… When I think about it now I can relate this to a couple of symptoms starting from his birth when we had to keep him for hours in “skin to skin” position as he wasn’t able to keep his body temperature high enough by himself. Then as he grew up I couldn’t stay outside for a long time with him in the winter, he would react really strongly to the sensation of cold on his hands and feets, crying very loud, nearly hysterical, really faster than all other kids. Then we could see him with swollen lips very oftenly whitout being able to find out what was causing this reaction. Then arrived the stomach aches wich we consulted a doctor for but nothing came out of the different tests… Then one day he went to the public pool with his class at the end of the school year and this time, even if he never had any issue with cold water before, he got close to lose consciousness. After less than 5 minutes in the water he got all warning symptoms of eminent anaphylaxis: strong headache and earache, nausea, troubled vision, low pressure, excessive paleness and weakness… It took 45 minutes for him to get back to normal. To this day I don’t understand why the pool’s staff didn’t call the emergency services, that could have been fatal. Still, we couldn’t figure out what was going out, thinking it was probably a weakness due to deficient nutrition. So I got him a family doctor and settled for a second battery of health tests. We got the answer during an abdominal echography: the simple cold sensation of the doppler on his belly caused him instant geant hive… Now everything is confirmed on paper, we got the medics, but that’s not enough for me: I gotta find a solution for him to live a pleasant kid’s life.

  9. I have it, it started when I was about 8 and I am 45. Claritin helps quite a bit, if I can remember to take it a few hours before I swim or go outside (in winter). It’s annoying but doesn’t affect my life as much as it did when i was younger.

  10. I have had CU for the past 7 years. Mine initially when I was walking across grass with dew on it. My condition is gradually worsening. I can no longer tolerate cold drinks or temperatures under 68 degrees. I am on a large dose of antihistamines that are not effective. I live in rural Northeast Texas . Most doctors here have no idea how to deal with this disorder.

  11. I’m 46 now and have had CU since I was thirteen. Luckily I can eat and drink cold things, but I’ve gone into shock and have had to go the hospital twice—once after water skiing (wind + wet is the worst) and once after swimming in very cold water. I have small reactions all the time, like when I start sweating a bit when walking our dogs—my body where I sweat breaks out in hives, or if I hold something cold, like a drink, for too long. One thing I’ve learned only recently is that wearing a wetsuit is incredibly helpful with swimming. I feel a little silly doing it sometimes, but I was actually able to go snorkeling in the ocean with my kids for the first time. Also, like a previous poster, I’ve had a reaction to IV fluids because they’re usually stored in a fridge. However, for subsequent procedures I asked that the fluid be at least at room temp and that solved the problem. I’m not sure all the medical staff even believed me about this allergy, but I’ve learned to shrug off the disbelieving looks and advocate for myself. Fortunately, I live in California, so winters are pretty mild, but when I would bike to school in cold weather in college my face would become so swollen that my eyes would almost swell shut! I remember hiding in the bathroom before class praying for my face to warm up so I would look normal.

Speak Your Mind

*

be-a-guest-blogger

Follow us on Twitter