HeatHives.com-Cholinergic Urticaria and Hives

As most of you know I have also been on a gluten-free/milk free diet for about 1 1/2 months now. I just wanted to provide a quick update on it.

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.

Lately I have been looking a little more closely at the possibilities of sun exposure as a way to help reduce cholinergic urticaria symptoms.

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).

Hello Everyone! We had a great post in the forum a couple of days ago by a new member concerning possible treatment of cholinergic urticaria by using anti-immunoglobulin E therapy. A medical article excerpt seemed to indicate successful treatment of Cu with this therapy. I am always interested in learning as much as I can about cholinergic urticaria, as well as latest treatments and tests, so I found the article and information very interesting (thanks again for posting the info).

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 have always wondered if there was some way to artificially cool our bodies. I mean after all, we don’t break out in hives when we are at a stable body temperature, right? If there was only some way to keep our bodies cool and prevent them from getting heated in the first place.

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…