Wow - met with the Endo. and hopes were dashed. Called the office a week a head of time, explained concerns re: uticaria and offered to email all my notes/articles ahead of time. Was told to bring them with me and then when we met with the Endo. I felt the information wasn't really considered - felt that it was brushed off and that I didn't have enough knowledge to know what I was talking about. Was given the answer that it could just be allergies and not autoimmune uticaria. I said I knew it was - my careful information gathering was not even looked at. the Endo did agree to do further thyroid testing and re-refer us back to my daughter's allergy dr. who never mentioned the possibility of an autoimmune issue 2 years ago. Wow. My poor daughter - not sure where to go from here..... two people have recommended a natural path and my husband and I are considering the possibility of having to take her out of country for someone who might take us seriously. How do you fight for further testing when you don't speak the same language as the doctor's and they are not getting what you are saying? The more reading I have done, it seems the uticaria could be caused by a funky thyroid - I am almost hoping that her test results come back with something, then at least we know what we are dealing with. It seems crazy that all the information I have shows a correlation with the uticaria/autoimmune and type 1 but the diabetic educator and the endo. have not heard of this???? Am I going crazy? Am I looking at things that are not there? Where do we go from here?
Absolutely, I've only seen him the one time, so he may not even remember me, but you can tell him I'm the one in Great Falls who saw him a a couple of months ago. The test actually took a month to come back from the lab, apparently it's a hurry up and wait test. And I'm not sure you could talk to him directly at first, but you could explain it to his nurse and she can leave him a message to call you.
Ooh, I just remembered something my allergist said. He told me if he would have thought about it he would have done an "ice cube test" when I was in his office. He said you place an ice cube on the arm of the person and let it melt, if a hive develops, it's autoimmune urticaria. He had originally tested me for this because not only did it not have a pattern but I also told him whenever I was outside in the cold for long periods I would get hives on my face. Maybe you could try the ice cube test?
I have heard of the ice cube test in reference to diagnosing cold urticaria (which I had fairly severely during my teenage years), but never heard it in reference to autoimmune urticaria, interesting.
I think it's just a test they can use to see if it's your own body releasing the the histamine or if it's an outside source like food or drugs making your body release it.
Hi sgiskaas - can you tell me if you had the uticaria before, or after, your type 1 diagnosis? I mentioned the high affinity g receptor to the allergist and he said it wouldn't make a difference? He has agreed to refer us to the immunoligist at children's hospital -
I was diagnosed with Type1 10 years ago, I was diagnosed with the urticaria only two weeks ago. The doc said it was an auto immune disorder. I have come up with one other thing they can't explain, it's called granuloma annulare, I get bunps under my skin where apparently the cells have decided to "cluster", no one knows why it happens, but I was told it is more common in Type 1 diabetics than other people. All I can figure is it's my immune system has gone haywire so my body is turning on me. Don't get me wrong, other than a few days of misery once in a while and the ocassional embarassment because of bumby skin I am basically in good health. The diabetes is somewhat under control, I work hard and I play even harder, just a nuisance more than anything. Even the urtacaria, I just take Zrytec and benedryl(a lot of them both) and sleep for a couple of days and I'm all better. I hope this helps
I can't imagine why he would say it wouldn't make a difference, it's the test to see if it's caused by your body or not. If it comes back as high affinity it's your body doing it to itself and if it comes back normal it's something outside the body causing the problem.
I don't know why he says it won't make a difference either - he gave some explanation that went outside of layman terms for me. Not sure if he is all that confident about what he is saying or with the questions I am asking. Today she missed school again - her lip is swelled up. We are tired of this. Thanks forthe information.
Hi shammbux. I was going to suggest you have your daughter see an immunologist and then saw that you're being referred to one. That's a good step.
I've recently had some new allergic reactions and have been through a lot of testing. One thing I learned is that the level of Ige found in blood tests doesn't reflect the severity of an allergic reaction. Even those who have outgrown an allergy may have a positive Ige for many years afterward. In addition, there's no "normal" antibody concentration, so the presence or absence of Ig antibodies all by itself isn't always meaningful.
Expect them to want to look for a lot of more ordinary things first before they diagnose autoimmune urticaria. Most doctors follow the principle of looking for horses, not zebras, when they hear hoofbeats! That's not a lot of comfort, I know--believe me! But it does make sense in a way.
I hope your daughter feels better, one way or another, soon.