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.
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!
UPDATE: 1/21/13 This is an old archived post, and I have made more recent posts regarding my new diet and how I was able to finally get my hives under control. Read more about it on my cholinergic urticaria diet page. What I essentially did was keep a journal and do several allergy elimination diets.