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 did not experience hives prior to being diagnosed (I was diagnosed at the age of twelve) but did experience a couple of years of very intense urticaria in my late teens/early twenties, much like your daughter is experiencing now. I have suffered from allergies all of my life, both environmental and food, but I have never been able to pinpoint what was causing the hives, though irritants like cold weather or friction against my skin from certain fabrics could definitely set them off. Generally though I couldn't find any regular pattern to them at all. At the time I also developed an aspirin sensitivity so be very careful about what medications you give your daughter. All my allergist could say was "Hives are very mysterious." So utterly, utterly frustrating! Eventually my hives became less intense and now at worst I just have very sensitive skin. My endo's theory was that the hives were caused by a virus that eventually worked its way through my body. I think there is definitely some correlation to type 1. I am sorry I can't offer any great insights other than that there is hope your daughter's condition will improve.
ps. I have a friend who is also an RN who finds taking the supplement Quercetin very successful treatment for his hives. You might want to look into it. It shouldn't be too hard to find.
I've been T1 since junior high age, but: When I was in college I had some (probably mild compared to many cases) cold uticaria. It may have had something to do with diabetes but it seems that what I had has completely gone away as I got older. Cold uticaria among younger people seems to come and go like that even without the presence of diabetes.
I see you're writing this in the wintertime... is it possible that your daughter has cold uticaria or is this something that happens even in warm weather?
Cold uticaria is a little different than the other types which are reactions to food etc. It's triggered by cold and the threshold seems to vary. Antihistamines helped me noticeably but didn't completely make it go away.
To me the point is that we do not have T1 in the first place. We have an autoimmune condition. This led to the development of T1 but can also cause many other problems. In my experience many T1 will be confronted with the development of other conditions like
-thyroid: hashimoto, graves disease
-digestion: coeliac disease
-adrenal gland: addison's disease
-brain: myasthenia gravis
-skin: lichen sclerosus, lichen ruber, vitiligo
What you describe is another autoimmune condition of the skin called Autoimmune Urticaria (Hives). The driver behind all that seems to be some sort of problem in the regulation of the immune system. Researchers like Denise Faustman are working on a medication to modulate the rogue behaving T-cells of the immune system to stop the attacks. Likely they have found a mechanism to prevent the attack of the beta cells. If this will be effective for other autoimmune conditions as well is one of the many questions to answer in their long term studies.
Holger, I wish someone had told me about Autoimmune Urticaria when I was suffering from hives! I always suspected it was autoimmune but my doctors kept insisting it was probably food or environmental because of my history with allergies, but as I said, there was no overarching pattern. I think this might explain what was going on with my body and now it has gone into remission.
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.
Taryn - I am also discovering this - some of the articles I read mention that persistent hives/uticaria should lead to further testing for more serious autoimmune disorders. I wish this had been done for my daughter, a few years ago - I am glad to hear that your's has gone into remission.
Holger - thank you for your wisdom! Once Ab's was diagnosed w/type 1 - I started to suspect as much as what you have written down. I hope that with this knowledge, we can start looking at dealing with the source of the problem, rather than just the symptoms.
Oh! I have pushed for further screening for thyroid and celiac - I think they must have certain tests done, that are not the full-gammit, and will only test further if the results indicate some concern. My daughter's pediatrician has agreed w/me that further testing should be done.
Hi Tim - my daughter has noticed she reacts when it is colder outside; unfortunately, she also reacts in the spring, fall, and summer. I think my daughter has built a tolerance towards the anti-histamines ....we meet with the endocrinologist, for the first time, in the middle of March. I hope that she will help us understand what is happening inside my Ab's and how we might try to tackle it. Thank you for sharing.
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.
Hi Taryn - I will definately look into Quercetin. Sharing your information will help - as I am reading everyone's response, it sounds to me like this is something that will lessen w/time.
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.
Wow. I had cold uticaria when I was a teenager. I've never met anyone else who had it (in fact, I thought I was crazy until a doctor told me it was an actual allergy). For me, it didn't just occur in winter, though. Anything that was remotely cold or cool would trigger a reaction. Even going from a hot to a cooler (but not necessarily cold) environment would trigger it, walking outdoors in the evening during summer with bare skin exposed, any wind at all that cooled my skin, touching relatively cold items outside such as metal or sitting on cool cement, holding an item just removed from the refrigerator ... Even taking two Benadryl beforehand I was unable to swim in cold ocean water (I'd get out after 30 seconds covered head-to-toe with hives). The one time I tried swimming in an outdoor pool without taking an antihistamine beforehand it triggered a full-blown anaphylactic reaction and I lasted ten minutes (ignoring the hives) before I collapsed from my blood pressure plummeting. That turned me off swimming outdoors for YEARS, even long after the reactions had (thankfully!) disappeared.
I've had problems with allergies my whole life and I would consider it a sort of autoimmune issue, except that your body is reacting to a harmless substance that doesn't happen to be part of your body. I've had a severe food allergy my entire life, but it started out when I was young as hives showing up hours after I'd eaten the food. It wasn't until reactions started happening immediately (and became anaphylactic in nature) that we were able to connect the food to the reaction—and it wasn't one of the common allergies like nuts or gluten. I developed a ton of seasonal/environmental allergies suddenly when I was 24, and I've noticed that when they are bothering me a lot, it's like my body gets ultra-sensitive and reacts to any irritant at all, and things like fabrics or friction can cause hives (and I also have minor reactions to foods that don't usually bother me).
I think one of the hard parts about allergies is they can be so hard to pin down and they can also change really suddenly. I hope you are able to find some answers through Children's Hospital—all experiences I had with them as a kid were excellent, so I hope the doctors there are able to help!
I never realized there was a link with her hives and her diabetes until understanding they were both autoimmune - I had only spoken w/one other person who had experienced the hives prior to diagnosis. I am amazed at all the others out there - it is encouraging to know that we are not alone. The cold uticaria surprises me - I do remember my daughter saying it is worse when it was cold and I thought she was imagining things - guess not! Can you tell me how long you had the uticaria prior to your diagnosis, and is there anything that you have found helpful in managing it?
The first time I remember it is in the fall of grade three or so—I used to come in after playing outside with my hands red and swollen so that I was unable to form a fist. So I was probably around eight, although this was before I developed full-blown hives. Now that I think about it, I did have problems when I was younger of my face and eyes swelling up for apparently no reason; I used to lie with a cool facecloth over my face to help the swelling go down. We figured it was eyestrain, but I'm sure now it must have been an allergic reaction to something. Around this time I also developed mild asthma, and during the same period had the then-mysterious food allergy that caused hives hours after eating.
I got Type 1 diabetes when I was nine. The cold uticaria got MUCH worse in my teenage years and that's when we actually went to see a doctor about it. My food allergy also got much worse (in the sense of immediate, severe reactions) and this is when we figured out for sure what was causing it. As a teenager I used to avoid cold as much as possible, and if I knew I was going to be exposed to cold (like before swimming outdoors), I would take two Benadryl to try and prevent a reaction. After my really bad reaction where I collapsed I was basically scared of anything cold so didn't need much additional motivation to avoid it. I am grateful I outgrew it (which is very common, from what I've read), because cold is a pretty hard thing to avoid completely.
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?