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

In a recent post, I talked about how my wife had recently developed a strange eczema-type rash on her chest and back. Just to recap, this rash slowly developed over a period of a few weeks, until the rash was getting quite noticeable, and really bothering her.

She was really starting to get aggravated about the rash. She would be sitting in bed, and then start scratching her back, and then her chest. It was itching her quite a bit in her sleep as well.

She also said that while she was at work, it would get itchy, especially when she would get heated. I found that interesting, and in fact, many people with eczema also get really itchy when they get hot. However, I don’t think it is quite such as “prickly” sensation like Cholinergic Urticaria. I think it is more of a typical itch.

I jokingly told her to amplify her rashes by about 1,000 times and then she can know what it is like to live in my skin (and the rest of you). I think it helped her relate to my hives a bit more, as she felt first hand how uncomfortable itchiness can be (although it was still nothing compared to hives).

What Caused My Wife’s Rash on Her Chest and Back?

When my wife first started to get this rash, I was really shocked. My wife has always had gorgeous skin. It is the really clear and smooth type, that has really nice glow to it. In fact, I compliment her all the time on her awesome skin. She never seems to have an issue with eczema, itching, or anything like that.

So whenever she got the rash, I was perplexed. I didn’t really put much thought into it at first, thinking that it may pass or something. But after it started to get progressively worse, I started to give more serious attention to it.

So we started thinking of everything that could potentially be causing her rash & itching. We thought perhaps it was a new detergent we got, but it was supposedly a “hypo-allergenic” brand with no artificial chemicals or scents (made by ALL Brand). So we shot down that idea.

Then, we thought perhaps the shampoo, but she had used that before and had no issues. Then we considered lotion, but she had been using that for a couple of months with no issues. We thought and thought, and couldn’t figure anything out.

But I knew that rashes just don’t pop out of the blue. Something was causing this to happen, and the fact that it kept getting worse made me realize we need to figure it out soon. My logical type of thinking always makes me want to “solve the puzzle.” Perhaps that is one reason why CU has been driving me so crazy, I haven’t yet been able to “solve it.”

Anyway, I kept pondering and pondering about my wife’s rash. I tried to rack my brain to think of anything that has ever caused her to get a rash or reaction. Then suddenly, I remembered that several years ago, she had this cinnamon flavored toothpaste at her mom’s house. When she would use it, her lips would get red and a little puffy.

So I briefly thought about Cinnamon. I also remembered how when she ate cinnamon gum, it would also cause a slight redness around her lips.  So naturally, my thoughts were, “If she gets that kind of reaction from cinnamon on her mouth, then she must be allergic to it. Do we have anything cinnamon she has been eating lately?”

Bingo. I then started thinking about how she recently switched her breakfast meal. She normally eats those Eggo Waffles with syrup. However, she had recently been eating a new cinnamon kind. Furthermore, she also started buying applesauce, and surprise, it too had cinnamon in it. This all happened right at the same time as the rash (give or take a few weeks).

So I jumped up with excitement, and said, “I know what is causing this babe!” She was like, “What?” in a somewhat skeptical tone. And I proceeded to tell her my theory. I reminded her of the cinnamon reactions she had in the past, and then pointed out that her rashes began about 1-2 weeks after she started eating all the new foods with cinnamon in it.

She thought about it for a  few seconds and said, “Oh my gosh Ben, I think you are right.” So she completely cut the cinnamon out of her diet, and her rash slowly improved. It is now completely gone! She is 100% back to normal! So cinnamon was definitely the cause, and once that was gone, so was the rash.

Of course, I have been really happy about it (after all, I solved the puzzle, and prevented further suffering for my wife). I have been rubbing it in her face and saying, “You’re the big RN nurse, but yet I was the mastermind that figured out your rash.” Of course, I am totally joking, but it is fun to play around like that with her. She just replies, “Your right Bennie-Bob, you cured me.” I know, Bennie-Bob is corny, but I like how she calls me that.

Relating Cholinergic Urticaria to My Wife’s Eczema

My wife’s little rash experience was certainly nothing like CU. Cholinergic Urticaria symptoms are way worse, more painful, more itchy, etc. However, this whole experience has really got me thinking.

If I had never figured out that cinnamon was the cause of my wife’s rash, she would have kept eating the foods that were stressing out her system. Her rashes would have persisted, and she would have been miserable for the whole summer, possibly longer. She would have had the rash until one day, by accident, she stopped eating the cinnamon.

Yet I knew something had to cause it. There is almost always a logical explanation for things in life. By keeping in my mind that in fact something had to be causing it, it forced me to continue trying to think of what the “thing” was.

I know that Cholinergic Urticaria is caused by something. At this point, I just don’t know what. Perhaps it is something hormone related. Perhaps there is an allergy that is causing us to do this, and we are completely unaware of it (just as my wife).

But there is no doubt that something is causing this. The second we find out what that “something” is, we can fix it just like my wife was fixed once we recognized the “something”. People don’t just up and get rashes, hives, or anything else for no reason. There is always something causing it. In my wife’s case, it was an allergen which she never really realized bothered her that much, and it was in food she was eating daily.

Perhaps in our case, it too is an allergen. Maybe it is something we eat every day, and we have no idea that this tiny ingredient is causing bad symptoms. Or maybe it is something in the environment such as pollen or dust mites, that is causing our system to go haywire. Or maybe there is something in the water, or an ingredient in something that is causing a delayed and peculiar allergic response. Or perhaps there is some type of virus or something altering our system.

In any event, I definitely know something is causing this, and I strongly believe that if we find that something and remove it from our bodies/environment, we can be cured forever. In my wife’s case, she was cured after about 2 weeks of absolutely no more cinnamon. In our case, maybe it will take 3-4 weeks or longer. But it should slowly creep away, until we no longer are bothered by the itching and prickling ever again. Slowly, we will just start to sweat when we get hot, and we will eventually realize we no longer have hives at all.

There are so many things that could be causing this, and that is perhaps the most frustrating thing. It could be diet, it could be environment, it could be hormonal, and so forth.

At this time, I don’t really think it is a genetic issue. The reason is that in most people it goes away after a period of time, and often stays gone. So to me it sounds like something gets out of whack, and then gets corrected (such as sun exposure/vitamin D, body stops being allergic to something, etc.).

Again, I have made several posts about my diet journeys so far, and they have definitely altered the level of my CU. I am going to attempt some more extreme diets soon, and eliminate some other foods that I suspect I have an allergy to.

Anyway, I thought I would post that today. Also, there is a great thread in the Cholinergic Urticaria forum recently by a member who has been able to really get some sweat, and suspects a cure (even if only temporary). So you may want to check that out.

I will keep everyone updated on any new diets when I try them.

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Hello Everyone!

I just wanted to update everyone on my diet thus far. I have successfully been Gluten and Milk free for a little while now, and things are slowly improving. My rashes are almost gone, and my Cholinergic Urticaria symptoms seems to have lowered in intensity.

I was kind of reminiscing on my last diet, and I feel like I made a terrible mistake. I feel like I was overcome with temptation, and quit way too early to see any positive results. After all, I was only on the diet for about 1 month, and very strict on it for only a couple of weeks. I have been doing a lot of research on several food related allergic responses in the skin. I decided to write this “long” article about my recent thoughts on CU.

What intrigues me, is that there are different ways food can cause problems, and even different parts of your immune system or antibodies that can be involved. An article I found really interesting was on the itching skin condition called “dermatitis herpiteformis.” Of course, this is something VERY DIFFERENT from what we have, but it does have some similarities (mainly just intense itching in the spot where the eruptions occur).

Herpeteformis Dermatits (abbreviated as DH) is a condition that causes INTENSELY itchy skin eruptions, small blisters, and a burning sensation. It usually persists for a person’s entire life (although some people go into remission). I read a really good article on it, and you can read it as well here.

Here are some things I will highlight in the article that caught my attention, and really got me thinking:

1. Here is the first thing that caught my attention in the article: “The cause of DH is allergy to gluten, a protein found in wheat and some other grains. Usually allergies, likes hives and hay fever, are made by the body’s IgE system. This can be treated with pills and shots. DH is different, and is an allergy of the IgA system. IgA is an antibody produced in the lining of the intestines. The usual allergy treatments are useless.  The rash is caused when gluten in the diet combines with IgA, and together they enter the blood stream and circulate. They eventually clog up the small blood vessels in the skin. This attracts white blood cells (neutrophils), and releases powerful chemicals called complements.”

I found this interesting because it says that because it involves the IgA system, most allergy medications are useless. Hence, I know that antihistamines are basically useless to me, and many others I have also talked to indicate the same thing. Perhaps this is because there is involvement with IgA or another antibody.

Also, notice how this reaction is occuring. The gluten (an extremely “sticky” substance)-somehow sticks to these IgA antibodies in an unusual way. They then travel through the body, and get deposited in the blood vessels in the skin where they remain for LONG periods of time. Then there is a reaction due to the bodies immune system releasing chemicals to try to “kill” these unknown substances. This results in the inflammation and intense itching.

2.  The second thing I found interesting is this:  “Some people only have the Celiac Disease symptoms (stomach issues), some have both Celiacs Disease and Dermatitis Herpeteformis,  and some just Dermatitis Herpetiformis. It is not known why some develop one and not the other.

I though that was interesting because even though these people are having sometimes completely different problems (skin or stomach issues or both), they are being caused by the same thing (Gluten). So this shows that it can have different effects of different people based on possible factors such as genetics or lifestyle.

3. The other thing I thought was interesting was this:  “Complete elimination of gluten is curative, but improvement takes months. The gluten-free diet is very difficult, as tiny amounts of gluten are in almost all restaurant and prepared foods, gum wrappers and the like. Cutting down on wheat and gluten may reduce the amount of medication needed, but will not be curative.”

So basically, it is saying that complete elimination of Gluten is CURATIVE (meaning it will cure it completely), but improvement of symptoms takes MONTHS. This is because the “sticky” gluten binds to the antibodies and ends up in the skin, and it takes several months before they are broken down and removed from the skin.

It said merely “cutting down” or “reducing” gluten may lessen symptoms, but won’t cure it. The only way to completely cure it, is to cut out Gluten 100%, and you won’t see the benefits for MONTHS after that. Some articles even suggest up to a year or more to see full results.

Pulling it All Together for Cholinergic Urticaria:

So some of you may be saying to yourself, “Okay, this is sorta interesting but what does this have to do with cholinergic urticaria?” Here is what I am trying to say about all of this:

1.  Food can definitely cause strange allergic reations. Doctors are now finding that strange skin conditions and allergic reactions are actually related to food causes after all (such as DH mentioned above).

2. The same foods can cause a variety of symptoms in different people. They can involve different types of antibodies never before thought to be connected with food allergies. Some may have skin itching, some may have IBS symptoms (stomach pain/diarrhea), some may have other allergies.

3. When the IgA antibodies are involved, it seems to be less responsive to traditional allergy treatment (anti-histamines, etc), and takes MONTHS for these antibodies clear after the allergen has stopped being introduced or ingested by the body. So it takes a long time for these allergy causing molecules to break down.

4. Cholinergic urticaria could work this same way. Here is my “latest theory” below:

My Latest Theory of Cholinergic Urticaria:

Again- I am not a doctor or anything-just a guy who hates having hives. So this has come from my own research, pondering, and guessing. It may be completely wrong and I totally acknowledge that. But it is a working theory, that i hope I can test over the course of the next year. I look at it like this: I would rather have 100 wrong theories, but know that I am at least thinking about it and trying my best to figure it out, than to never have a theory at all. But anyways, here it goes:

I suspect at this time cholinergic urticaria could be caused by some type of food-related reaction. Just like the case with DH above, our bodies make these IgA antibodies in the intestines. Something we are eating (gluten, milk, hydrogenated oil, additives, candida, wheat, nuts, etc…It could be different for different people) is reacting and binding to these IgA (or other antibodies).

The IgA (or other antibody) then gets circulated throughout our bodies with this allergen stuck to it. They get into our skin, and accumulate in higher than normal numbers. So basically we have these strange antibodies in some layer of our skin (I am guess where the sweat gland is stimulated by the nerve to initiate sweating).

Any normal time, we seem fine. We don’t itch, we don’t have a reaction. However my skin does always have a little “uncomfortable” feeling even when I am not itching, but maybe it is just me. Anyways, when we get hot, nervous, excited, or whatever, our brains send a signal down through our nerves–all the way to our many many sweat glands telling them to “release sweat” so that it can cool down our bodies.

But at that moment when our bodies release that chemical to initiate sweat, our mast cells break down or our immune system detects this mix of antibodies and acetylcholine  (maybe because of too much IgA chemicals), and we get extremely prickly, itchy, and even develop pinpoint hives and flushing. Or perhaps the IgA is clogging our sweat glands?? Who knows exactly what is happening in detail?

If this is correct, then the only way to permanently “cure” cholinergic urticaria, is to find the offending food (or other allergen) that is causing this strange reaction to occur, and completely remove it from the diet. Or hope that our bodies adjust and go into remission at some time in the future, which could be soon or as long as 30 years from now based on most information I have read.

BUT, this diet process is not instant. It will take MONTHS, or even a year to see the 100% full effects (just like in the case of DH above).

How Does this Fit in With Other Physical Hives?

Not only do I think this is what is happening with Cholinergic urticaria, but also the other hives such as Aquatic Urticaria, Dermatographism, Solar Urticaria, Pressure Urticaria, etc. They are all related, but maybe a different component is being triggered.

For some reason, it manifests in a different way for the different hives sufferers. Maybe there are different antibodies involved? Maybe it is different food reactions? Maybe it is just our own unique DNA or chemistry? Who knows? But I think it could be related to all hives conditions (or at least many). Even one article I read said that people with exercised induced angiodema (where you start having an allergic reaction when you exercise-but not like CU-instead their face and throats swell), have in some cases been linked to wheat.

Facts That Seem to Support The Theory:

• Many of us do not report a high effectiveness of anti-histamines. Perhaps this is because of different anti-body involvement, or something.
• Some suspect a genetic link- however, not all of us have family members with it. So perhaps cholinergic is or isn’t genetic. But maybe what is actually causing Cholinergic Urticaria is genetic. For example: A food allergy predisposition can be genetic. So maybe it is the allergy (to say gluten, milk, etc) that is causing the CU. But some members of our family don’t get the allergy gene. Others get the gene, but have a completely different allergic reaction, or none at all? But if it was completely genetic, why does it come and go? Even I have had a remission of my CU (and people in the DH article above also had remission-even though they didn’t change their diet). So perhaps sometimes it comes and goes in some people.
• Symptoms increase and decrease in intensity- This can be due to many things, such as seasonal change. But perhaps also it is diet related. Maybe we go through periods of eating less of the allergen (and have less intense CU), and other times we eat a lot of it (and our CU picks up in intensity). I have witnessed first-hand FOR SURE that when I eat lots of milk, gluten, and processed foods, I not only get very reactive CU, but a skin rash in areas such as my hands/fingers/elbow/neck.
• No one I know has went on a diet removing suspected food allergens for more than a month at most (including me). If this is like DH, it could take several months, or even a year or so for the itching to go completely away, and that is only with 100% avoidance of the food causing the problem. So no one knows for sure if CU is related to diet, because no one has survived long enough on an organic diet, or diet removing their possible offending foods, long enough to see the true results.
• I have talked to one guy that has confirmed a different subset of physical hives (pressure urticaria), that was completely resolved after he suffered with it for 10 YEARS. How did he cure his hives? He did a diet and cut out gluten to lose weight (atkins diet). He cut out the carbs, and noticed his hives were gone after a month or 2. He has now been hives free for years!

Conclusion: Wrapping it All Up:

My latest thoughts are that cholinergic urticaria IS somehow related to some kind of complex food reaction (or other allergen). It is binding and reacting in an unusual way compared to most allergies. Again, it could be so many different things (gluten, milk, wheat, fish, nuts, preservatives, food colorings, artificial flavors, etc.) There could literally be so many possible things that are messing us up. Especially notice how there isn’t much knowledge about CU–perhaps because it is a relatively new disease that is coming about because of all the food industry chemicals that were invented in the past 40 years??

Anyways, I am on this gluten and milk free diet for the long term! I am talking months. I am eating as organic as possible (lots of fruits and veggies). I am eating lean meat (salmon, tilapia, chicken, and turkey mostly). I am also trying to cut down on processed sugars. When I feel the need for junk, I will get all gluten and milk free ingredients, and make it at home myself (such as gluten free/milk free banana nut bread my wife recently made).

I figure that I have nothing to lose on this diet. It doesn’t really cost more money in groceries, etc. I have nothing to lose except the hives. I have everything to gain (better overall health from eating better, could cure hives, could get in better shape, etc.). So I see nothing but positive benefits coming from the diet.

I am going to see how this goes for the next 6 months for SURE this time (at least). No quitting! I am going all the way. I will keep everyone posted. If anyone else tries to go organic or eat healhy or cut out foods, and you see any results after a few weeks/months, please let us know in the forum!  Good luck to everyone, and sorry for writing such a long post!

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