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?
Has your daughter been tested for ALL possible food allergies? Food allergies in children often cause problems with hives and eczema. And I'm not just talking the "standard" allergies like nuts and dairy. I'm allergic to (white) potato, and when I was a kid the allergy showed up as hives all over my back hours after I'd eaten. It wasn't all the time—but I didn't eat potatoes at every meal. If it had been something I ate constantly, like wheat, the hives could have been constant. It wasn't until I was a teenager and the reactions started to become immediate and severe that we knew for sure I was allergic to potato. We'd suspected it before, but hadn't known for sure because, really, who is allergic to potato?! (I don't know why I was never allergy tested; I guess because it was 20 years ago and the hives I got were more annoying than anything. As an adult I've been skin tested for potato and it was strongly positive.)
If she has already been tested for food allergies and you've tried an elimination diet and such, then I would start to look at more rare things like autoimmune problems. I hope you get some answers soon ...
Hi Jen - she has been scratch-tested and results came back w/Rice, Dairy, Soy. Was told by the Endo. that if someone w/autoimmune uticaria is scratch-tested the results may not be ? as persons w/autoimmune uticaria are skin sensitive to begin with. I think the tests need to be more in depth. Its frustrating, I think her issues are more than just food sensitivities but having to try and fight for other possibilities to be considered.
Dear Shammbux, I know urticaria, but not uticaria. When I tried to start a good search on uticaria in medical literature, it put me back to urticaria. I then went to the Mayo Clinic site, and it did the same. So I'm assuming you're dealing with urticaria.
If the Endo is going to do some more thyroid testing, fine, let him. Let's face it, doctors are used to conditions they've seen over and over, and 95% of the time, they can diagnose.
Where to go from here: #1: If he agreed to do further thyroid testing, wait for results. As an endo, he knows thyroids.
#2: Consider asking a dermatologist. Try at the nearest best university hospital. Take a picture of the lesions and email. Give your phone # for a call back by them. If email addresses aren't available, get on the phone. University people always like problems.
Thanks Leo - I am doing just that - waiting for her thyroid results and the next steps are a naturopathic doctor. We will also consider the Mayoclinic (I have been on their site) - not sure what the costs will be, being out of country. I believe they have a clinic close to the BC border?
You have some fine universities in Canada. A dermatologist is used to emails with pictures. I don't think Canadian insurance covers Mayo. You'd need to ask, but Canadian insurance will ask who you've tried there first. So use the university closest to you and start with phone and emailing pics. Just an idea. The derm sites have pictures on them that are spot on, so send 'em some pictures!
I can't see the reason for going out of country. If you are in Canada perhaps you just need to try a different hospital. GOing to the US will put you in the poor house. As for you internet research not being considered, Dr.s get lots of people in who have researched things and they probably don't have time to go through it all and stuff on the internet can be inaccurate. I agree with Leo2 see what happens with the thyroid, and perhaps going to a GP about the skin condition. The Endo specializes in hormones - not skin. So your GP might know what it is - if not then they can recommend a dermatologist.
The only thing you are going to get in the US is a massive bill for something that can be resolved by a Canadian Dr. If it's really serious take her to a children's hospital (I'm assuming she's under 18).
My view of results with naturopathic doctors has not improved in the many years of my adult life dealing with disease conditions around this earth. If you have a relative who is one, then I apologize.
I simply have seen poor and non-existent results and good money spent. When a condition baffles, we are raised to heightened lofts of trying anything. What you really want is someone who has studied the accepted science in the area of urticaria. Urticaria is likely in dermatology. Autoimmunity is in many areas of study. Universities bring people together from many areas. Your Endo is still invaluable here. Hope you're feeling able to just wait it out a bit!
Unfortunately - our GP referred us to an allergist specialist 2 years ago - he said it was likely she may just need to live with it as very difficult to find out what is causing the hives. The Endo. says there is no link between her uticaria and type 1, and we are on a minimum 12 mos. waitlist for Children's Hospital. We go back to the allergy specialist on Tuesday -he agreed for me to send him my researched info. My gut tells me it is autoimmune and the information I have gathered indicates it is not a coincedence. If I had pushed 2 years ago for other test results, I wonder if my daughter may not have developed Type 1 - or at least not develop it until later. Funny, everyone here in Canada says to take her to the Mayo clinic in the states!
Hi Shammbux, I was diagnosed with Autoimmune urticaria. I am also a Type 1 diabetic. Have you tried going to a private blood lab to have the test done? I was lucky, my allergist tested for it because it didn't present itself as something with a pattern, like when I ate a certain thing or took a certain drug. Not absolutely positive but if you tell the lab you want to test for high-affinity IGE receptor, maybe they can help. Right now my breakouts are only once every two to three weeks so Zyrtec and benedryl is doing the job of controling it, but I have to take both, otherwise it just goes down not away. I get hives but I also get angioedema, in fact woke up this morning with a fat lip. LOL I know, not funny but if we don't laugh we would cry. Since being diagnosed with the diabetes, it seems my immune system is going haywire. I have had type 1 for 10 years now. If you want the name of my doctor let me know. He's in Billings, MT. And he is quirky but really good!! Do you keep a record of your daughters eating? Maybe keeping a record of everything she eats along with medications and the times when the urticaria presents itself would convince an allergist to do the test. Saying a prayer for you and your daughter.
Hello! I have written down high affinity IGE Receptor. We have been keeping track of what she eats and when she breaks out. The allergy dr. did agree to read the information I sent him and said it seemed interesting - he wants to rule out the allergies first. We go back on Tuesday and hoping he will then refer us to the immunology department at Children's Hospital. I wonder if your doctor would be willing to talk to us - up here in Canada? I have also contacted the Canadian Society of Allergy and Clinical Immunology department and hope to hear back from them.
I'm don't see why he wouldn't talk to you or your doctors. His name is Dr. Sweet and he is at the Billings Clinic in MOntana. He is really a sweet guy, no pun intended.
Thanks! I will try to get a hold of him! Are you okay with me telling him that you suggested I might call him?