Cholinergic Urticaria (Chronic Heat Hives)-Cholinergic Urticaria.net I Get Itchy Heat Hives (Cholinergic Urticaria) When I Get Hot or Exercise

Sorry that it has been a while since I have updated, but I have been extremely busy these past couple of weeks. But I wanted to provide a few updates below:

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 Cholinergic Urticaria symptoms, 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 Cholinergic Urticaria 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!

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A few years ago, when I was 18 years old (before getting Cholinergic Urticaria), I noticed this strange lump on my lower back. It wasn’t very noticeable, but I could feel it with my hand. It felt a little tender. I was concerned about it, so I decided I better go to the doctor and check it out. The doctor looked at it, and said it could be suspicious. I opted to go ahead and have it surgically removed and biopsied to see if it was a cancerous or non-cancerous tumor.  They completely removed it, and it turned out to be something called an angiolipoma.

What is An AngioLipoma or Lipoma?

A lipoma is simply a non-cancerous fatty tissue growth that has built up under the skin (a tumor). An angiolipoma is basically the same thing as a lipoma, with one main difference: Angiolipomas have blood vessels in them. So Angiolipomas (what I had), are simply these small lumps that develop in tissues or under the skin. They are firm and have a cyst-like appearance. Sometimes they are sensitive or tender. In some cases, they may not hurt at all.

They aren’t usually harmful in any way. Just like moles are usually harmful. They are just under your skin. They only thing is that sometimes that can be “ugly” and people may want them removed for cosmetic reasons. Sometimes, they may grow in tissues or parts of the body that make them necessary to remove (such as the eye or organ).

Anyways, back to my story for a minute. I had the angiolipoma removed from my back. It was sorta freaky, but I was glad to have it gone. It never has re-appeared or anything. However, I now have discovered SEVERAL of these things on different parts of my body. Some are easy to see, others took a very careful examination to find. I have several on my arms (usually small, but a couple of “pea” sized ones). I also have some on my stomach, side, back, and a couple on my thighs as well. Most of them are not noticeable at all. My wife has never seen them until I pointed them out. I didn’t see many myself, and only felt them after careful examination.

Another bit of good news is that during my research, I stumbled upon a medical article and a guy was 80 and had several of these on his body and had them for years. The good news is the number—80. That means “hopefully” it isn’t going to shorten my life span or anything. Most people say they are completely harmless anyways, and there is no known connection with these and any other disease.

Picture/Image of 2 Angiolipomas on My Right Arm:

After doing some research, I found that it is quite normal for people that have these to have several (multiple lipomas). I read some forums where some people wrote that they have had 40 or 50 cut out. Some have hundreds on their body. Luckily, I think I have about 10-20, but some are so small that they are not even noticeable at all. Others are only barely noticeable. They usually don’t grow to a large size, but you can always have them removed if they get too large.

One thing I found interesting is that these are “autosomal dominant.” If a disease is autosomal dominant, it means you only need to get the abnormal gene from one parent in order for you to inherit the disease. One of the parents may often have the disease.

I later found out that my mom has a couple of these, and apparently my dad also had several removed from his back in his younger years. So apparently I got scammed by my parents in the “lump” department!  Thanks a lot mom and dad!

Could Angiolipomas be Related to Cholinergic Urticaria?

Of course, my mom or dad has never had cholinergic urticaria, and they have these lipomas. So obviously everyone that has these things don’t have cholinergic urticaria. But it makes me wonder, if they could be related to cholinergic urticaria in some way. Here are 2 ways it could be related:

1. A bad “gene” in the skin or tissues is also a gene that controls CU. This is one way it could be related.
2. Or a person with a lipoma, angiolipoma, or other non-cancerous tumor may develop a random tumor on a gland, organ, or other tissues that could lead to cholinergic urticaria in some way (i.e. it could over-produce histamine or something).

I seem to have gotten a “double dose” of whatever gene causes this condition since both my mom and dad had it.

One thing that really grabbed my attention was a post I read on one forum. A person said they had an MRI done (kind of like an x-ray), and this is what they said:

“Doctor said I have “several” angiolipomas on my liver and kidney! OMG, I’m worried.”

I found this interesting because I always thought of angiolipomas as being on the skin or just under the skin. But apparently they can even occur in deep tissues or organs such as a kidney. So it is always possible that I have one of these things internally on some organ or gland, and that is messing up my system. So perhaps it is at least possible that there is a tumor or gland issue causing this? At least in some cases? Maybe it is different for everyone? Maybe it has nothing to do with it?

Could Angio-Lipomas Be Related to Gluten Intolerance or Allergies?

I have no idea if I even have a gluten intolerance or not. I am on a gluten and milk-free diet at the moment to see if it helps the hives at all. So far I am not seeing positive results for the hives (although my skin rash has completely gone away). But I have only been on it for not even 1 month so far. I will need to do it for a few months to know for sure.

But I was “googling” angiolipomas and it brought up a forum up with people talking about lipomas and gluten. Perhaps there could be an association with food allergies? Or maybe it is nothing more than a mere coincidence, and gluten has nothing to do with it? Who knows?

Conclusion: Angiolipomas Are Harmless (Usually)-But Could They Be Related to Hives?

Maybe in a few years I will get some of these I have noticed cut out of me. I have to wait until I get some kind of health insurance first.  Sometimes I think maybe it would be helpful to have just a full body MRI and PET scan to see if there are any unusual tumors, or increased glands in my body that could be related to this cholinergic urticaria condition.

It sure would be nice to have a surgery and be done with this torture called cholinergic urticaria hives once and for all!

Gluten Free/Milk Free Diet Update:

The diet is going great. I am basically eating out of a crock-pot about 4 days a week now. It is easy to cook with, and tastes great. My rashes are all gone, my skin looks better, but the hives are still there so far. I have had a few itchy episodes these past few days.

It may or may not be related to gluten or milk, but it is definitely worth trying for a few more months to make 100% sure.

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