I am looking for anyone who may have had recurrent hives/uticaria prior to being diagnosed with Type 1 diabetes. My daughter has been suffering with recurring (daily) "hives" since 2009. She has been told that we may never find out what she is reacting too and that daily doses of xtra-strength reactine + benadryl will not harm her in the long term. When her face and eyes swell, she can miss a few days of school before the swelling goes down. She breaks out in large, raised bumps, that can cover most of her body - they are hot to touch and not only itch, but hurt. She has been taken extra strength desensitization drops 3 x's day and still suffers. When she was diagnosed with type 1; I, of course, read everything I could. I think there may be some kind of correlation with the hives/uticaria + type 1. I have read older posts (in my googling) where others have experienced similar stories. I would like to connect with those who have experienced this as well, would love to know what information you may have to help us alleviate some of my daughter's symptoms. We have been referred to the allergy department at Children's Hospital but they have a 12 mos. waitlist. The allergy specialist she saw in 2009 did not recommend further autoimmune testing and what he has recommended has not worked. If you, or someone you know, has a similar experience, please get in touch with me -
i don't (and never did) have hives but i have a lot of allergies and was (and still am) having some weird skin rashes, issues prior to Dx and now too. rashes on my legs which blister, burn...a different rash on my back, along my spine and other areas. I was just given a ambulatory (whatever that is) referral to see a Rheumatologist next week. I hope it's nothing bad. Sometimes I do feel like my body is attacking itself, rarely feel well, ya know. Yes, it's our autoimmune system or lack of it..and there are many other things which effect this. Can you get into a pediatrician at least. Could she be having a strange reaction to any meds, insulin(s) - although extremely rare, any rashes at injection (if MDI's) or insertion sites (if pumping)? Did anyone do allergy testing, RAST testing? It's now 2012 and if you've not seen the allergist specialist since 2009 and she's still suffering call them immediately. they can also biopsy (sp) the rash.
Also, when was your daughter diagnosed, how is her control? I notice everything (rashes, pain, etc..) is worse when my blood sugars are high.
I was going to mention insulin allergy. I developed one this year. Not to insulin itself, but something else in the solution. So that's something to keep in mind. Though your daughter's hives sound different from mine, which only occurred at injection sites.
I encourage you to keep pushing doctors about this. Mine didn't take my hives very seriously, and it was several months and several doctors visits before someone realized it was an allergy.
My endo did say that type 1s are more likely to have hives than other people because of our screwy immune systems. I hope your daughter finds some relief soon.
We are working with a diabetic team (nurse, nutritionist, ped. dr., diabetic educator) the support has been amazing (very greatful). Funny, when we gave our medical history when she was admitted into the hospital, no one mentioned a correlation w/her hives and auto-immune+type 1 diabetes. I provided a copy of articles that I had copied and gave it to the diabetic team and our last clinic - very surprised that this is not more common knowledge. I will be asking if it is appropriate to be sharing this information w/the allergy specialist she saw for her hives in the first place - if he is not already aware of this, maybe with the info. he may screen other patients differently and give people a heads up. Can you tell me what RAST testing is? Would you be willing to share how long before you were diagnosed, you started having allergies? My daughter's reactions are not related to her injection sites, or her insulin (thank god). Being a new diabetic, we wanted her to understand how to administer her insulin and give herself needles, before going to the pump. We have a rep from Animas coming next week to tell us all about their brand of pump. I am sorry to hear that you rarely feel well - I haven't experienced this myself, but only as a mother do I see how it affects my daughter - my heart breaks sometimes for her, I don't know what it would be like having to live like that. I hope that you start to feel better - not sure how long you have been living with Type 1. A friend told me about Vitamin D re: rheumatoid arthritis - funny, Vitmain D is also mentioned in some articles re: hives/uticaria. Feel free to let me know how your appointment goes w/the Rheumatologist.
Just a side note about pumps--I have been on an Animas pump for the past three years and love it. And their customer service is excellent. If I can answer any questions for you regarding my experience with the pump please feel free to contact me, shammbux.
thank you for your kind words. i started having rashes, etc...about 2 years prior to my diagnosis...i was diagnosed as an adult over a year or so ago, but I knew something was wrong for months and months prior. just had no clue until I went DKA. So,late adult onset. RAST is a blood test they give to test for allergies. I'm going on my insulin pump TOMORROW! I decided on Medtronic - Revel 523 w/CGM - their customer service is EXCELLENT. It gives the smallest delivery of insulin, which is great for me because I'm very petite and insulin sensitive. I actually just saw an allergist a few weeks ago, it was the majority of our discussion really; autoimmune type 1 diabetes and autoimmune system..hand in hand. It's why many Type 1's also have thyroid issues, celiac disease (was she tested for that) addison's disease and just a host of other chronic autoimmune disease. fun stuff.ugh!
And yes, Vitamin D, many type 1's (well, folks in general) are low in vitamin d because we simply don't absorb it properly. I was on a prescription now take it daily - D3.
Hi highly urge you to get her tested for celiac! I have been a type 1 since 1999, and in 2006 I started getting a lot of skin problems. Every few months I would break out in hives so bad I had to go into the doc for shots. My internal med doc told me they don't know cause of hives, most likely an allergy or stress. Well in 2009 they started happening a lot, every few weeks. At that point I was having a lot of stomach issues, and was finally told to see a GI. Initial blood tests confirmed that week I had the celiac antibodies, week later I got the biopsies done and got the diagnosis. While waiting for the results did some research online and 10% of T1's develop celiac, and one of the symptoms is skin issues/hives. I actually have one celiac friend where that was her only symptom. I was so upset at myself trusting that it was stress/allergies and for not pushing for more answers when I had the symptoms. Your daughter may or may not have celiac, but it can't hurt to rule it out. Good luck to you!
Thanks Crystal - I was told she was screened for celiac at her hospital intake - with the reading I had done, I asked her to be retested and the response was that the blood test was accurate. I plan to put her on a gluten free diet for two weeks, to see if it eleviates her hives, after her blood sugar levels become a little more consistent. I plan on discussing with the endocrinologist on March 13/12, as well. Did you go gluten-free, and if so, did that eleviate the hives?
I don't have type 1. I'm a prediabetic. I had chronic hives for several years. I had to set an alarm clock to wake me up in the middle of the night to take medication or I wheezed in the morning. The cause was never determined. The problem slowly went away. I get one or two hives occasionally.
I later found out I am allergic to aspirin and Advil. It is possible one of these was the cause.