Update on Diet Progress:

As most of you know, I have been gluten and milk free for quite a while now. There have been some good results, but unfortunately not with the cholinergic urticaria. I still have CU, and I do not see any noticeable difference with the new diet.

However, being milk free has definitely helped my stomach and skin rashes (eczema) clear right up. I feel better as well. However, the cholinergic urticaria is still here full force. So I plan to continue to cut out milk for sure (probably for the rest of my life just because I have a severe intolerance now). However, I may slowly introduce gluten into my diet soon (Thanksgiving is coming up…yum yum). So basically, milk is still being avoided, gluten is once again an option, but in moderation (I will still avoid it if possible).

Update on Cholinergic Urticaria (hives)

As I mentioned before, I was going to attempt an experiment of more Vitamin D and sun exposure to see if that will help the hives. However, this experiment is definitely being placed on hold until it gets warmer. It is actually been snowing here recently, and it is freezing (my thermostat says about 60 right now).

Of course, with the cold weather, the hives are super intense if I get hot. As long as I am in my apartment (my ice box) I am fine. But if I go out or into a hot building, then I instantly break out in a very painful and itchy reaction. A couple of people have also noticed a big change in their cholinergic urticaria symptoms on the forum. So I hope everyone who’s hives are worse will make it okay through the winter and cold months.

Also, I had to go out today and run some errands, and I tried to take a claritin (antihistamine) to see if that would help at all. I am in such fear of breaking out now that it is so cold. Luckily, I didn’t have a reaction, but it wasn’t due to the antihistamine. It just wasn’t very hot where I went today while I was out. When I got home, however, my wife had made a salad with vinegar dressing, and the vinegar made me get hot and prickly, especially on my face. So the claritin didn’t help at all.

The bad new is, I can now confirm that I feel hung over after taking those things, and they give me a splitting headache! I really don’t know why I took it, I have already realized it doesn’t really help at all, but oh well.

I just hope I can tough it out through the winter and cold months, and when it gets warm I am hoping to get out a lot more and sweat!

Website/Blog and Forum Changes & Update

The website/blog portion:

As many of you have probably noticed, I have the comments turned ‘Off’ on the blog portion of this site. I never really explained why, but I felt like I should say something. First, I had so many great comments posted, and I really appreciate that!

However, for every 1 great comment, I would get 20 nasty spam comments (trying to sell me Viagra or something), and it was starting to take a lot of time sifting through all the junk to see the actual good comments. I do have a spam service on this blog, but there were still spam comments getting through. So I removed them completely. It is just way too time consuming dealing with all of that spam, and plus there is a forum if anyone wants to post anything. So I just feel like the comments aren’t really necessary since there is a forum, and I cancelled it out. I probably won’t ever bring the “comments” ability back, simply because it takes a lot of time, way to easy for spammers, and we have a forum to post info, thoughts, ideas, etc.

Also, I will probably be updating the design theme for this blog/website portion within the next few weeks.  I also have some plans to take more pictures (since I can breakout so easily during the winter), and also post lots more articles, and maybe even a video of a live outbreak??

The forum portion:

First, just let me say that since starting this forum, there has been so many awesome people that joined and posts made! Thanks so much! I have learned a lot, and it helps being able to relate with others. Also, I feel that we will really be able to help out each other and others with Cu in the years to come, and give any updates if our conditions change, a new treatment is tested, or if it goes away (or we find anything out).

Unfortunately, someone has decided that they want to spam the forum with lots of Viagra offers, and porn. That is NOT COOL, and I delete this as soon as I find it on there.

Because of the recent spamming post and fake registrations, I have temporarily removed the ability to post pictures within a post, and have disabled links. I have also removed the personal messaging option to prevent the “real” forum members from getting spammed.

I am working on a few other things to make it more secure, and I am trying to eliminate this kind of thing from happening. So please bear with me. If you see any fake posts trying to sell viagra or some crazy thing, or porn related content, please feel free to hit the “report to moderator” link if you want. However, I am on the forum several times per day now, and remove it as soon as I see it. But I want to apologize for anyone that might come across this junk until I can get it resolved.

I may be adding a few updates to the forum as well in the weeks/months to come. I may play with a design. Also, I may be adding new topics, and moving threads/posts under them to re-organize the forum a little better to make it easier to read and find information. So rest assured that I won’t delete any one’s post, however, I may re-categorize them under a different topic once I set everything up.

Also, remember that you are always welcome to post new ideas, suggestions/topics for the site/forum, and more. Even if you just want to get on there and vent about CU, your welcome to –just try not to use profanity please =). If you have any other suggestions on anything from content, to surverys/polls, or anything else, just let me know!

How to Manage Cholinergic Urticaria Reactions in Public:

• First, do everything in your power to avoid the reaction in the first place. This means avoiding your triggers (heat), wearing light colored clothing on sunny days, wear thin clothing, try to control the temperature if possible, and take it easy when walking to places. Take deep breaths, avoid things that may embarrass you, or make you anxious. The best way to deal with a reaction is to avoid it completely in the first place.
• If any combination of meds (such as antihistamines) help at all, consider taking them for that one day (of course, follow the dosage instructions). This may reduce the attacks, or prevent them all together.
• Try to exercise in the morning, to clear out the reaction and also your histamine. This can be painful and even dangerous. However, some people get up early and do a hard workout routine to get the hives out of their system for a few hours.
• If you do have a reaction in public-Don’t freak out! Getting nervous and thinking, ‘Oh no, people are going to think I am a freak’ usually only increases your temperature and makes the breakouts come on faster and more intense (trust me, I know). So try to relax and breath. One thing I have noticed is that it feels much worse than it looks. Most people will not realize you are having the most excruciating pain in your body, and the only thing they may notice is your scratching.
• At the moment you start to break out, try to quickly go where you can privately scratch and cool yourself down. If you are at work, school, or a store, try to go to a restroom (you can go in a stall and scratch yourself until it goes away. You can also splash some cool water on you, which could help stop the reaction. This can help out majorly. The freezer section may help at the store, but not always.
• Consider carrying an ice pack or small squirt bottle or water bottle- This is a strategy I have used often in the past. In fact, when I had my first trip to the dermatologist I took a squirt bottle with me and started spraying myself while I was in the lobby (I had a reaction). It can help to cool your body temperature. An ice pack also works great, and you can store them in a backpack, lunchbox, or briefcase-and then slide it in your pocket while you are going to be in public. As you probably know, cooling your body off quickly can sometimes stop the reaction immediately.
• Try to make your scratching random and don’t draw attention to yourself.  I usually just try to simply scratch myself and “pretend” like I might have an ordinary itch like anyone else. In reality I am usually wishing I could rip my shirt off and roll around on the ground scratching like crazy! But  scratch a couple of times of your face, then secretly scratch your back, then your arms, etc. in a random and quiet fashion makes it less obvious. After all, we know we can’t really resist scratching. I have tried, and it is nearly impossible (it is like not blinking for 10 minutes). If you can sit there and not scratch, then you have my greatest respect, because I just can’t do it. The funny thing is, I have to scratch, but the scratching really doesn’t help much. Cholinergic urticaria is the itch you must scratch, but the scratch that can’t relieve.
• Keep your fingernails short! If you have long nails (ladies or lazy guys) then you can really damage your skin and leave monstrous claw marks after a bad CU hives attack. I keep my fingernails almost to the nub! Well, not really the nub, but let me put it this way, I never have fingernail marks that stay on my skin after the attack clears.
• If you are in school, try to sit in the back of the classroom. At work, try to sit in the back office or avoid contact as much as possible. This will ensure that you have a quick exit route if you ever need to get out quickly.
• If you can’t do any of the above, and you find yourself having a monster hives attack with no way of escaping or cooling yourself down, then you may just have to wing it and tough it out! I usually just scratch and try to get through it. My hives usually start itching bad, then I get this burning sensation that radiates down my body, and then finally relief. After the hives are over, I am usually tired, but I have also found that after a severe reaction, I will usually be okay for a while. So if you have this reaction, I feel for you, but at least it will probably go away within a few minutes, and hopefully you won’t be too wiped out afterwards. Of course, if you ever start feeling like you can’t breathe (anaphylactic shock), call the hospital or 911 as soon as possible!
• Last but not least, if people do notice your scratching, just try to explain it in terms they will understand. I don’t always feel like sitting there and explaining to people, “Well I have this rare hives condition in which my body breaks into hives when I get hot and I itch like crazy.” You will get a lot of raised eyebrows when you say that. So sometimes I will just say, “Man I am having an allergic reaction to some food I ate, or my detergent.” People can at least understand that a little better. But I only use that when I am not in the mood to sit there and explain my crazy condition called cholinergic urticaria!

For example, Michael J. Fox (the actor from the Back to the Future movies) developed Parkinson’s disease, and has been instrumental in finding new treatments and also getting lots of research for the disease. Christopher Reeve (the actor that played Superman) also is another great example of this. He was paralyzed after a horrific horse riding accident, and for the remainder of his life (he has passed away now) he was dedicated to spinal cord and paralysis research, and in the process really made great advances towards a cure, research, and more.

All of this just proves my point: We need a huge celebrity or business tycoon to come down with a severe and debilitating case of cholinergic urticaria. Don’t get me wrong, I wouldn’t wish this condition on my worse enemy! But it would be nice to get some serious attention, research, and money into finding out what causes this and how to fix it (if it is possible to fix it without any harsh side effects).

In the past I have searched vigorously to see if any famous people have ever had this condition. My searches have always came up empty. I did a long time ago see that someone (I think they directed plays or something) had this. But I don’t think they were well known (enough anyways), and now I can’t even find the short article (although I do recall that it didn’t really say much).

So I guess that means that one of us will need to become movie stars or multi-millionaires, or famous in some way, and then get attention to this condition in any way they can…..Any volunteers?? Hehe. Well I guess it would be kinda tough after you already have CU, but certainly not impossible!

But why does it do this? This just absolutely stumps me. What caused it to happen in the first place, and then what is it that makes this decide to just go away? Does some event, food, or situation somehow trigger our immune system?  Does something in our bodies (such as a gland) over produce a chemical that throws things out of whack, only to re-correct itself years later?

It just doesn’t make sense to me. I am sure there must be some kind of explanation, however, they obviously don’t know at this point. It seems that the first step to permanently finding a cure, is to find the cause. If they don’t fully understand why cholinergic urticaria occurs, then they will never be able to fix it.

As I have mentioned before, I have recently been trying to get out in the sun to see if it helps at all with the hives, however, this is already becoming difficult and I may have to cancel this experiment until I get a house (or until summer finally arrives again). This past weekend I could not get out at all. It was rainy one day, and cloudy and extremely cold the other day. I did manage to sit outside for about 30 minutes yesterday, but I was freezing the whole 30 minutes of time. Today it is cold as well, and rainy, and I haven’t been able to get out today at all either. So I will try to get out as much as I can, but it looks like I may be waiting until the summer for sure.

First, I still have cholinergic urticaria, and can still breakout at any time. So far the diet does not appear to be helping with the hives. However, I do plan on continuing the diet for at least a few more weeks, or even a couple of months.

I have realized that the milk free diet is going to be permanent in nature even if it doesn’t help my cholinergic urticaria. Milk was the issue with my stomach problems, and since going on this diet I have not had one single episode of stomach cramps, excessive bloating, excessive gas, diarrhea, or any other bad digestion problems. So even though the milk doesn’t help the CU, it looks like this may be a life-long avoidance thing (I may cheat or eat small quantities here and there after the diet experiment is over).

Also, I have not had any skin rash or eczema problems, which I now strongly suspect was linked with the milk. So milk was causing some problems for me, and I don’t think at this point it is causing the CU, but time will tell since I plan on avoiding milk long term.

In terms of gluten, I am starting to think maybe gluten is not an issue. I did strongly suspect it could be involved with CU, and I have confirmed that it is related to at least some physical uritcaria conditions. But at the same time I am not yet seeing any results, and someone on the forum has confirmed that they went gluten free for almost 9 months and didn’t see any effects at all.

So if this diet hasn’t changed within a few weeks/months, then I will probably keep it similar to what I am eating now, but I may expand my foods to those that contain wheat/gluten occasionally, while still avoiding milk as much as possible. I am happy on the diet so far and I am really not having any excessive cravings or problems.

In one of my last posts, I talked about the possibilities of sun exposure being related to cholinergic urticaria. Just as a reminder, I was basing this possibility on my own lack of sun exposure (and the relation to sun exposure and CU), a poll which showed that many people on this site did not seem to get a lot of sun exposure, and also a few online resources which talked about vitamin D and sun exposure’s affect on the immune system and allergies.

As I have mentioned in other posts, I live in an apartment complex and it is not very practical for me to be able to go outside a soak up the rays (I don’t have a porch or yard and there are always lots of people out there). So I don’t really feel comfortable going out there and sitting and potentially having an outbreak in front of an audience. Plus this CU has made me somewhat anti-social anyways.

Here are a few more points that make me want to take a closer look at sun exposure to see if it has any effect:

• Throughout my life before I got CU, I was very active and outdoors a lot. I played baseball, I rode my bicycle, etc. However, before I got cholinergic urticaria I did become much less active (and incidentally less activity=less sun exposure).
• Then my CU first appeared in the dead of winter. Notice that some people with CU (not all) also experience either their first outbreak during winter, or more severe symptoms during winter. This could be due to the cold weather and the bodies inability to acclimatize to heat. However, there is also another variable mixed in there: sun exposure is much less for most people during the winter because of the cold temperatures.
• When my CU went into remission, it was at the beginning of summer/late spring. I began going outdoors a lot. In fact, I remember sweating tremendously after spending a couple of hours detailing my car outside. After that, I can’t recall a breakout for a period of about 2 years or so. I was in the sun almost daily, and it stayed that way for about the next 2 years.
• When my Cu came back, I was once again almost always indoors and received probably less than 1hour of direct sun a week! That was way too little. This has continued since I have had CU. I have had a few periods of sun exposure here and there. But I have not had REGULAR and consistent sun exposure daily for a long period of time (weeks or months). Instead I may have a spurt or where I get a couple of days in the sun, but then go a few days with no sun, etc.
• The sun could have lots of beneficial effects on us: It is known to produce vitamin D in the skin (a very important vitamin that plays a huge role in our bodies), it helps to regulate our immune systems, it helps us sleep more regularly due to it’s effects on melanin production, it is known to make people less depressed and more positive (which is why there is often many more depression cases in winter time-there is much less sun exposure during those months), and much more.
• I also made a recent post about Immunoglobulin E (IgE). This is an antibody which could have a role in cholinergic urticaria according to some online article excerpts. One interesting article excerpt I found was that in vitro (the womb) a study found that Vitamin D actually supressed IgE in a fetus. I wonder if Vitamin D could also have a supression effect on IgE, which could potentially reduce CU symptoms. Of course, that is if IgE is involved in cholinergic urticaria in the first place.
• In addition, I also suspect the ultra-violet rays could have a beneficial effect on our skin in other ways. For example, many potential allergens on the skin are quickly killed by direct sunlight exposure. One great thread on allergies in the forum showed that one of the people on this forum has an extremely high sensitivity to D. Farinae (a common house mite). House mites and bed bugs for example, cannot live very long in direct sunlight. Some bacteria, fungi, etc. are also controlled with direct sunlight. So I think this could be beneficial if we do have some unknown problems with that as well. The sunlight could potentially lower the amount of any possible allergens, mites, harmful bacteria, etc. on our skin.
• Many skin conditions are treated with ultra-violet light. Dermatitis or eczema, psoriasis, and many other conditions can become less noticeable after a direct light, and some doctors even give ultraviolet light treatment to the skin areas when necessary.
• While increased sun exposure, sun burns, or excessive sun may significantly increase the risk of skin cancer, it also reduces a large number of cancers according to most online articles.

Those are just a few of the things I have been pondering about the sun exposure thing in relation to cholinergic urticaria. So it doesn’t seem like a bad idea to soak up the sun, and this past week that is exactly what I have done. Here is my experience with it so far:

My Experiment/Experience with Sun Exposure and Cholinergic Urticaria

In an attempt to get in some sun rays before the winter season hits hard, I thought I would give it a go. So for this past week I have been going outside and sitting in front of my apartment door for about 20-60 minutes in direct sunlight. I did not wear sunscreen, however, I did wear a t-shirt, shorts, shoes, and a hat (for most of the time). My arms, legs, neck, etc. was fully exposed to direct sunlight.

First, it actually felt great just sitting outside. I have almost forgotten how much I do love nature and the outdoors. I sat outside my first day for about 45 minutes. Towards the end of the time, my skin started to heat up and I could feel the itching and prickling.

I noticed that I got a little bit of a headache later that day from being out in the sun. I suppose maybe this was due to the fact that I have hardly been out in the sun at all for the entire summer, and the exposure maybe caused a chemical thing in my body which led to a headache?? Maybe my body was in shock from the sun lol.

The very next day, I woke up feeling really energized and refreshed. I again sat out in the sun, and repeated this for the entire week. Each day I got at least 15-20 minutes of direct sun on my body.

So far, I have felt more positive, I have more energy, and my skin seems to be a little more clear looking. I always try to objectively look at the situation and all of my experiments and think, “Okay is this just a placebo or what?” But I do think I can credit the energy and happier moods to the sun for sure.

As far as cholinergic urticaria, it is still there. It has seemed like it takes longer for it to come out, but in this week of sun I have not yet noticed a major difference. However, I also realize that if there is a major deficiency of vitamin D (which is really likely considering I have hardly been in the sun at all, and I don’t drink milk which is one of the best sources of vitamin d besides the sun), then it could take time for my body to adjust and start working properly again.

So I feel that to know the full effects it would take at least a month or two. I am going to try to do this consistently as possible, however, winter is here soon and I don’t know if I can sit outside on these cold days, so this may have to wait until a few months from now until I get a house to know for sure. I plan on hopefully getting a house by June or July of 2009, and then I can really do a lot of experiments that I have been wanting to try.

How Much Sun Exposure Is Enough for Vitamin D?

Most of the articles I read seems to suggest that dermatologists recommend approximately 10-15 minutes of direct sunlight on about 40% of the body daily to produce vitamin d (after about 2:00 pm when the sun’s rays aren’t as intense).

I am no expert, so you will want to talk to a doctor or dermatologist if you plan on doing this. I personally aim to get about 20-60 minutes daily. Obviously if you have extremely fair skin, a history of skin cancer, etc. you may not want to get nearly as much sun exposure.

I feel that this amount of time is sufficient for me to produce vitamin d and other potentially good solar effects, yet at the same time I won’t usually get too much sun (sun burn) within this time to my skin tone (I am white (Caucasian) but tan fairly easily).

What About Vitamin D Supplements? Can’t I Just Take Those?

This is something I briefly considered, but I have decided not to take them for a number of reasons below:

1. First, I don’t know for sure I am deficient in vitamin d (although I almost have to be since I never get a lot of sun and don’t consume a lot of milk which has a lot of vitamin d in it).
2. Vitamin D actually helps the body to absorb nutrients in the intestines. If it is true that I was vitamin D deficient, I can’t say for sure that I would adequately absorb any supplements. It seems it would be much better to get it from the sun.
3. Supplements tend to only contain a certain quantity of chemicals. There are actually different types of vitamin d  (D2, D3 for example), and each different molecule can do different things within the body. When you buy vitamin d supplements, it usually only consists of just 1 of these types. Instead, getting it from the sun is more natural and provides all of the benefits and chemicals you need. Our bodies are setup automatically to make this stuff when the sun hits it. Just like plants use photosynthesis from sunlight.
4. It is hard to know how much is right. Is 1000 units of vitamin D enough? Or 2000? Or just 500? It could be confusing, and I feel like someone should only do this under a doctor’s recommendation.
5. I am not a big vitamin person. I have taken vitamins in the past, but the problem again is that in my opinion these chemicals should only be used if you have a severe deficiency in something or a doctor strongly recommends it. Otherwise I feel like there is too great a risk of getting too much of a chemical to the point of toxicity (which can damage the body). So I try to stay clear of artificial chemicals and vitamins, and instead get all I need from the sun and eating a healthy diet rich in fruits, vegetables, and lean meat.
6. Last but not least, Vitamin D is not the only thing I am trying to get from the sun. I also want the other benefits of the ultraviolet radiation (killing potential bad mites/bacteria/), and also all of the other good benefits of being out in the sun (many of which scientists probably don’t know).

Conclusion: I Will Try to Get More Sun Exposure on a Regular Basis

So the basic plan is to get between 15-60 minutes of sunshine every day if possible (with the exception of rainy days). I will keep this up as long as possible, but I may be limited in the winter or cold days. If I see any changes, or if I have to discontinue this experiment I will keep you updated as always.

I am also taking precautions to protect agains skin cancer and sun burns. I am not getting excessive sun, and I try to turn my arms and shade my nose to prevent too much sun in one spot.  The idea is to get enough sun daily for Vitamin D and other benefits, but to avoid the harmful effects of overexposure (skin cancer, sun burn, premature aging/wrinkles).

Again, let me briefly mention that I am not a medical doctor, and this is a collection of information I found available on the web. I can’t always guarantee 100% accuracy, and this is not meant to be medical advice, but merely my own opinions and research.

The article posted didn’t give any information except for the main headline which reads, “Successful treatment of cholinergic urticaria with anti-immunoglobulin E therapy.” It does not give any information about the dose, length of treatment, or anything else. However the headline gives us enough information to reveal that at least 1 person had a successful experience with immunoglobulin therapy. So I thought it deserved a closer look.

What is Immunglobulin E?

According to Wikipedia, Immunoglobulin E is a class of antibody  that plays an important role in allergy, and is especially associated with type 1 hypersensitivity. An Antibody (also known as immunoglobulins) are gamma globulin proteins that are found in blood or other bodily fluids of vertebrates, and are used by the immune system to identify and neutralize foreign objects, such as bacteria and viruses. It is also known to play a major role in allergies, and can cause powerful allergic reactions (as we can all vouch for…right?).

IgE elicits an immune response by binding to Fc receptors found on the surface of mast cells and basophils, and are also found on eosinophils, monocytes, macrophages and platelets in humans.

So basically Immunoglobulin is an antibody that works with the immune system in helping it to detect potentially harmful things within the body (such as viruses or bacteria).

What is Anti-Immunoglobulin E Therapy?

Okay, so we know a little more about Immunoglobulin E, but what is anti-immunoglobulin E therapy? Anti-immunoglobulin therapy attempts to reduce the levels of IgE by forcing the IgE to bind to chemical receptors, and prevents IgE from binding to mast cells and basophils-thus reducing allergic responses and outbreaks.

So basically anti-immunoglobulin E therapy usually involves using a chemical/manufactured antibody to artificially bind to the excess IgE, which prevents IgE from binding to mast cells. Since the IgE often intitiates the allergic attacks on mast cells, this treatment helps reduce the allergic response.

This treatment is often done with a chemical/medicine called Omalizumab (Xolair). Xolair is often used in the treatment of asthma, and sometimes it is also experimentally used in other allergies. You can find more about Xolair here.

Could Anti-Immunoglobulin E Therapy Treat Cholinergic Urticaria

After some “googling” on anti-immunoglobulin E therapy, it seems that this is a relatively new thing, and they have experimentally used this in several allergies. I was able to find articles on this being used on everything from food allergies (such as peanut allergies), to HIV/AIDS, Asthma, and more. Some treatments were effective, some were not.

Again, the fact that some cases of other allergies weren’t successfully treated made me a little less optimistic about it, and even an Anti-IgE company states it may not work on everyone. After all, we know there have been steroids, anti-histamine, and other treatments that have also helped treat CU with mixed results as well.

As already mentioned, it seems that at least one case of a person with CU was successfully treated as the medical article excerpt mentioned, however, we do not know the specific details about that case. However, the research and experiments could at least help us to find out more about cholinergic urticaria, and hopefully one day we can find out more about it–such as what caused it in the first place and how to cure or successfully treat it (safely).

This may be something you want to mention with your doctor, however, I am sure there is a lot unknown about anti-IgE therapy, so I would be extremely cautious and really think hard and talk to a lot of medical professionals before attempting to try it.

Is Anti-Immunoglobulin E Therapy Safe?

This is a bit hard to know for sure, as many articles I read stated that this was still relatively new, and being tested for safeness. One article I read here seems to indicate that there are some known risks with some forms of anti-immunoglobulin E therapy. The main risks mentioned were risks such as catching potential viruses or diseases such as HIV (in treatments where you get anti-immunoglobulin from blood donors). I am not sure if this is true with all forms of Anti-immunoglobulin therapy or not.

Another somewhat scary thing about this therapy is the fact that it does reduce IgE. Here is one thing that was scary about using anti IgE treatments:

“Recent research suggests that IgE might play an important role in the immune system’s recognition of cancer cells,so indiscriminate blocking of IgE / receptor interaction might have unforeseen problems.”

So this seems to suggest that messing around with IgE blockers might not be a good idea for long term cancer risks. As a side note, I wonder if we do indeed have elevated IgE if we are at a lower risk for cancer?? Maybe CU is both a blessing and a curse?

My Personal Thoughts On It:

This was certainly interesting, and deserves a closer look. Of course, don’t ever do this without first talking to a doctor (or two), and I would definitely ask a lot of questions before trying any kind of anti-IgE therapy.

Would I do it? Probably not. The cancer thing was kind of scary. I am often worried about new medicines and treatments, because a lot of times new medicines fix one problem, but then mess something else up in our bodies. So maybe a new medicine fixes CU, but then we get cancer or some other crazy side effect a few years later. Sometimes I feel as if medicine manufacturers/doctors try to “play God” too often and don’t know the full consequences of some chemicals or treatments.

Also I have made a personal commitment to myself that I am going to try a lot of my own experiments (diet, sunlight, water filtration, etc.) that I know are more safe for at least the next year before I ever consider taking any type of medicine.

I would definitely like to see more research done on this, and more experiments. Perhaps this could one day in the future help treat many allergies and even cholinergic urticaria. Or maybe they find out a better way from this research they are doing right now. But I try to remain optimistic.

I wish we could have some kind of bionic system implanted, with a network of tiny wires that are connected to some sort of cooling device. This device could regulate our temperature, and if it sensed that we were getting hot, it could release a super-cooled chemical to cool us down immediately. I wish! Maybe at some point in the future they could invent something like that. The funny thing is, I was searching online one day and came across something called a “cooling vest.”

What is a Cooling Vest? Could it Help People with Cholinergic Urticaria?

Apparently cooling vests are just vests that have been specially designed to help cool the body. They are mostly used by people that work outside in hot conditions (construction, etc.) and also by sports players. Some of the vests I looked at included a vest that you can freeze (or small ice packs you freeze and then insert into the vest), and it supposedly retains the coldness for up to 3 hours. They also make other cooling wear such as leg wraps, neck wraps, vests, and even headbands and hats.

The vests are built with special pouches and designs to allow you to add water and then freeze them. The vest is insulated, and is supposed to maintain a constant temperature for up to 2-3 hours while you are wearing it. The cooling vest said that it is supposed to maintain a constant 58 degrees F temperature. I wonder if it works as they say?? I wonder if this would help cholinergic urticaria??

I thought the cooling hat was an interesting idea. I realized one thing recently about cholinergic urticaria–Don’t wear a hat! A large portion of body heat escaped through your head. When you wear a hat, it keeps all the body heat in your body, thus you are more likely to have a hives attack (I noticed this right away the other day when I wore a hat). So even if I am having a bad hair day I don’t think I will be wearing a hat anytime soon.

But of course even if a cooling vest did work, it is only a temporary fix. It still doesn’t cure cholinergic urticaria, it would only help (maybe) in reducing the risk of a hives attack on a hot day. I don’t plan on rushing out and buying a cooling vest, but the concept of being able to cool the body is interesting. Perhaps we could make our own “home-made” vests or gear lol. Ice packs work great. But the only problem is that we need something to kick on right when an attack happens. Otherwise our bodies might adapt to the coolness of the gear, and develop hives anyway. If it had a mechanism to wear it got really cold when you pressed a button or something, then that would be cool.

But I thought the concept of some kind of bionic integration was a pretty cool idea. I’ll bet a warming vest would help people with cold urticaria. Or remember those things called “hot hands” that you could shake and open and suddenly the small packets would get really really warm. My wife buys something like that for her stomach sometimes. It is a pad that you open and then it gets really hot for a few hours. Maybe that would help people with cold urticaria? Just a few ideas…

What is Chronic Cold Urticaria Hives?

This condition is very similar to cholinergic urticaria. People with this condition will break out into small hives or welts when exposed to a cold stimulus (such as cold air, an ice pack, cold water, etc.). It is almost the exact opposite of cholinergic urticaria, and in fact, the reactions look almost identical.

It occurs when a person becomes cold or comes in contact with a cold stimulus. Here are some things that can cause a reaction for people suffering with cold urticaria:

• Going into a cold environment (air conditioning or cold air)
• Sweating and then being cooled by a breeze
• Coming into contact with cold objects (ice cubes, ice packs, cold objects, etc.)
• Drinking cold drinks (smoothies, etc.)
• Eating cold foods (such as ice cream)
• Swimming in cold water

So basically, it appears that anything that lowers a person’s body temperature, or even causes “chill or goose bumps” can cause a reaction.

Treatment of Cold Urticaria

According to most websites, it seems the treatment for cold urticaria is similar for the other physical urticarias. It usually involves antihistamines, and avoiding of the triggers that cause the hives reaction.

Picture of Cold Urticaria Hives Reaction:

As you can see in the picture above, this person is having a hives reaction. This looks almost identical to most of the hives reactions experienced by cholinergic urticaria sufferers. I recently had a very bad hives outbreak, and my hives looked like this. It starts out almost like goosebumps (in fact, I do develop goosebumps before the little red hives appear), and then small hives can form. They are usually extremely itchy, however, some people with both cholinergic urticaria or cold urticaria report that their hives do not itch.

My hives tend to look a bit smaller than the ones of the picture above. Hives can sometimes vary in size from person to person. Some people may have itchy hives, so may not itch at all.

Similarites Between Cold Urticaria and Hot (cholinergic) Urticaria

These two conditions seem to mirror each other in so many ways. They are very similar, however, the stimulus that causes the hives is the complete opposite. Both conditions can have hives that look similar. Both conditions can come and go. Both conditions only occur in response to the stimulus (heat or cold). Both tend to first appear most frequently in people between the ages of 18-25, etc.

A person with cold urticaria sometimes may use heat to help stop a reaction. A person with cholinergic urticaria will sometimes use cold to help stop a reaction.

I thought the similarities were very interesting. Wouldn’t it be terrible if one person had cholinergic urticaria, and they were married to someone with cold urticaria. They would be driving, and the person with CU would get hot and break out into hives. They would turn on the air conditioner to help stop the hives. Then the person with cold urticaria would start getting hives from the cold air. That would be crazy wouldn’t it lol.

Anyways, these physical hives are all so interesting, similar, and a big pain and frustration all at once! Hopefully we will all be cured one day!

But one thing this cold weather has shown me is that cholinergic urticaria definitely gets worse in the winter-at least for me. I have also read in several other articles online that people with CU tend to get worse during the winter. I have been much more reactive now, to the point that I truly fear having to go out in public at all. I hate the intense sensation that a cholinergic urticaria outbreak can cause.

I can only speculate that what is making it worse is the extreme dryness and coldness of my apartment. During the winter, I do not generally turn the heat on. My wife and I try to tough it out by wearing extra layers during the day and blankets during the night to keep ourselves warm. Plus, since it is an actual apartment, it never gets too cold since there are neighbors above and to the sides of our unit and that helps keep in insulated. However, it can still get as low as 55 on the thermostat during the dead of winter. So it definitely gets chilly.

One thing I have noticed that is a big “NO NO” is taking hot showers during this cold weather. It seems as if the hot showers really rob my skin of moisture or something, and make the breakouts even more severe. I experienced this just the other day. Right after I got out of the shower and dried off, I noticed that I was really way more reactive.

I used to love just standing in the hot water of a shower before I got CU. I would get the water as hot as I could stand it, and just sit there and relax. But now I have to watch out for that. I don’t really break out in the shower, though.

When I first got CU, I did break out in the shower if the water was too hot. But now that doesn’t happen too often. I try to keep the water luke-warm, and I try to be quick so that I do not stay in it long. As I have mentioned before, I have extremely HARD water where I live, and the water even dries out my wife’s skin.

That brings me to a few tips I thought I would share with you to help manage your skin during these up and coming winter months:

Tips for Keeping Your Skin Moisturized During Winter Months:

• Try to take “warm” showers instead of “HOT” showers. This prevents your skin from getting so dry during the winter months. Plus, it cuts down on hives reactions in the shower for those of you that still experience this.
• Try to spend less time in the shower- in other words- try for a 5-10 minute shower instead of a 15 minute shower. Get in, get clean, and get out.
• Use Moisturizing Soap- Try to find a soap with a lot of moisturizers in it. Soap brands such as Dove, etc. often have brands with extra moisturized soap that leaves your skin less dry and more moisturized.
• Don’t Scrub Your Skin Too Hard- Wash gently and don’t scrub too hard on your skin. Scrubbing too hard can irritate your skin and make it more dry or uncomfortable.
• Take showers less often. You may want to consider taking showers less often during the cold months. This is something I have already started doing these past few days. Instead of taking a shower every day, try every other day. Or even every two days. You can always “spot” wash any dirty areas if necessary in between showers. Taking showers or baths less often helps the natural oils of your skin come out.
• Get a good moisturizing lotion, emollients, or oils. There are several things you can use to help keep your skin more moist. You can use standard moisturizing lotion. I have also heard of some people using a thin layer of Vaseline during the winter months to prevent dry skin (although I really haven’t used it as I feel it makes me feel too greasy). Oils are also good at preventing your skin from drying out excessively. I have mentioned before in other posts that I sometimes use a very thin layer of extra virgin olive oil during these winter months. It doesn’t really prevent a hives breakout (I wish!), but it does keep my skin more oily which does help prevent dryness. Most experts say it is best to apply any lotions or oils within the first few minutes of getting out of the shower so your skin can quickly absorb it. So I usually get out, dry off with a towel, apply the thin layer of lotion or oil, and then get dressed.
• Consider a vaporizer or humidifier- These can help add moisture to your living space. This helps a lot by keeping a more humid atmosphere, and preventing everything from getting too dry. Just make sure it doesn’t get too moist, or you might find walls developing a mold problem.
• Crank Up the Heater if Necessary-It may help to use both a heater and humidifier (or vaporizer) to make it even more humid. Of course, I am a cheapskate and I try to avoid turning up the heat as much as possible right now. But as I mentioned in another post, one person said they fully manage their CU by simply keeping it hot and muggy while they sleep. I have yet to try this, but I bet it does at least help keep the skin more moist.
• Try to Limit Extreme Cold Exposure- The cold winter months can be hard on your skin. If you find yourself outside, try to avoid long periods of cold exposure to your skin. This can make your skin more dry, chapped, and uncomfortable. Instead, try to limit direct cold air from hitting your skin as much as possible by wearing protective clothing and using lots of moisturizers.

Keeping your skin moisturized won’t necessarily prevent outbreaks of hives. However, I have found that it at least makes your skin feel better, and it may help 5-15% or so in protecting against an attack. When my skin is excessively dry, my attacks seem worse.

I hope these tips will help you keep your skin smooth and silky during the cold winter months!