The following post was submitted by a reader:
Hello,
I have severe cold urticaria and am wondering if this is related to cholinergic urticaria (i.e. via a similar pathophysiologic mechanism). Does anyone have any information about this. Also, do people with cholinergic urticaria have high IgE levels?
Garrett
mikemorse34 says
Actually, my IgE levels are very high also. I haven’t been posting much as it turns out that I have carcinoid syndrome caused by neuroendocrine tumors, but the triggers and symptoms are very similar. Histamine, the main culprit in what causes hives, is part of the allergic response we get to the heat or cold. IgE is the ‘allergy immunoglobulin’ that will typically be elevated due to your body’s immune response. It sees heat, cold, friction, etc as the allergen which triggers the IgE to release histamine. I was hoping that the cooler weather would bring some relief, but it turns out that it causes the same reaction. I also tested positive for mastocytosis. That’s kind of the fancy term for uticaria that is triggered by cholinergic reactions. I’m not sure if anyone else on the forum has had their IgE levels checked, but I do have very high levels.
Mike
Sue says
Hi Garrett
I’ve had Cholin Ergic Urticaria for 13 years. Mine is to heat. Funny you asked this question. I was recently at Stanford for a second opinion and I myself asked that. The Dr. I had seen, said “yes” my IgE level is very high. I still haven’t accepted this yet even after 13 years. For me it’s difficult to live with. I imagine it’s difficult for anybody. What am I saying. Good luck to you.
mikemorse34 says
Hello,
Just wanted to chime in again. I would venture to say that we all would have high IgE levels. The bright side of that is IgE levels don’t correspond to the severity in most cases. Immunoglobulins, such as E, G, M (the major chain ones) mean that we have pretty good, if not over-functioning, immune systems. Without them, we would basically get sick with every allergen, virus, or bacteria. I wouldn’t even worry too much about what your IgE levels are. The thing that I would emphasize is on histamine and mast cell levels. The tryptase blood test is the one that confirmed my mastocytosis. Mast cells are what causes the skin to release histamine and heparin from our blood cells. The histamine is what causes the hives, or uticaria. Heparin is something that causes your blood to thin, so if you have an underlying ulcer problem or other bleeding disorder, I would ask for a tryptase level to be drawn. High tryptase=mastocytosis, and that can eventually cause other issues. The good news is that they are working on new medicines that stabilize the cell membranes to keep them from leaking out so much histamine and heparin.
If you have normal levels, then it’s probably an idiopathic case, meaning without cause. For that, I would look at the section where Hivesguy has posted the tricks and tips that have helped him.
Best of wishes, Mike