[rak1978]

Does anyone else have chronic idiopathic urticaria/ hives?
We are not talking a minor case of hives here. 6 years ago I had them for 6 months...finally subsided with prednisone. Recently, I started getting them again. They came back in December, then they subsided until the first week of May and still going strong. I take Zyrtec every other day (don't want to take it too much, because I'm nursing). They are head to toe ranging from a little spot to being as large as my torso. My endo says they are an allergic reaction to an unknown allergen. Two allergy doctors agree that they are an autoimmune problem, not an allergy. Can you say, "Pass the buck"? I have hypothyroidism and type 1.5 diabetes as well, so I tend to think they are autoimmune in nature.
Any advise/opinions???

Thanks so much!!!
Rachel

[Richard157]

I am allergic to the iodine in shell fish and I have terrible swelling and hives when I eat shell fish. No crab, lobster, shrimp, oysters, clams, etc for me. Can you rule out the possibility that your problem is due to shell fish consumption?

[yannah]

we had a hive thread to real long ago.

I have an allergy to cold. no really. It has mostly gone away but if the temp dropped below 50 degrees i would break out in hives. leave it to me. some doctor told me never to dive in cold water. wierd.


yeap i googled it
Allergy to cold weather: Is this possible? - MayoClinic.com

[rak1978]

My cousin has that. It's cold urticaria. That is really bizarre.
Our bodies are interesting things.
And on the shellfish comment...I've had a very thorough allergy test and nothing showed up.
Oh well!

[rak1978]

So, yesterday afternoon, as usual I started breaking out in full body hives. I took my zyrtec, zantac, and benadry.. By the time I went to bed my lips were starting to swell. I prayed for the best and went to sleep. At 2am, my son woke me up crying and thank God he did. My lips were half the size of my face, I had massive hives from head to toe, my throat was super sore and my tounge was itchy/tingling. So, I figured it was probably time to go to the ER. They gave me epinephrine, high doses of benadryl through iv, and some other stuff. The lips took a few hours to go back down to somewhat normal size (they're still a little swollen). About 70% of the hives have subsided for now.
Now I have to carry an epi-pen and start on prednisone which is terrible for blood glucose control.
My allergy doctor said that these are all very tell tale signs of chronic autoimmune hives and angiodema. Not a food allergy.
Basically, my body is attacking itself. It goes to rest for periods of time and then can be triggered by anything (a virus, lack of sleep, anxiety, inflammation, etc...). He said a lot of people with other autoimmune disorders will develop these at some point.
Oh, the joys of having an over active immune system!!!
Thanks for letting me rant.

Have a wonderful day!

[yannah]

wow hon, this sucks. I would be so upset with this. but, the hives i used to get did just magically stop happening at some point.

so what do you do, just take steroids and stuff?
****.

you need a hug, wish i were there.

[rak1978]

Thanks for the nice words, Yannah!
Yes, I am going to have to start taking prednisone (a steroid).
Yikes.
I just checked my levels, and my blood sugar is 419 right now from the epinephrine they gave me last night. This is without starting the prednisone yet. I gave myself a 4 unit bolus correction, so hopefully it'll go down soon!
My endo told me to increase my basal by 25% for a while and check my levels every two hours and correct if needed.
I'm sure it'll all work out in time
Do you still get hives with exposure to the cold?

[sridder]

Just wanted to say I hope those hives go away and you feel better soon!

[yannah]

Originally Posted by rak1978

Thanks for the nice words, Yannah!
Yes, I am going to have to start taking prednisone (a steroid).
Yikes.
I just checked my levels, and my blood sugar is 419 right now from the epinephrine they gave me last night. This is without starting the prednisone yet. I gave myself a 4 unit bolus correction, so hopefully it'll go down soon!
My endo told me to increase my basal by 25% for a while and check my levels every two hours and correct if needed.
I'm sure it'll all work out in time
Do you still get hives with exposure to the cold?

nope, that lasted like 5 years. and then boom, gone.

[Ray4Rick]

You need to ask your endocronologist to test you for Celiac disease. It's an autoimmune disease just like diabetes & hypothyroidism. After being diabetic & hypothyroidism for 27 years, I was recently DX with celiac which is an allergy to a protein contained in wheat, rye, barley & oats. My gastroentorologist told me that diabetes, hypothyroidism & celiac are the 3 musketeers of autoimmune disease. So if you have 2 out of the 3, it's most likely the 3rd one isn't far away and will come out one day. My endocronologist is now testing all her diabetic patients for celiac and she's DX many.

Your hives are a symptom of celiac. There are many symptoms of this disease, that is why it's so difficult to DX just by sypmtoms. You need to get a blood test called anti-transglutimate. If that blood test comes back positive, then you might need to go for a biopsy of the intestine to obtain the degree of damage to your intestine.

Read up on Celiac disease on the net. It's amazing what you will find out.

This is serious...Please get tested.

Good luck.

[princesslinda]

Have you checked with a dermatologist about this? All of that itching would most certainly drive you nuts. I'm sorry you're having to go through all of this.

[rak1978]

Ray4Rick,
It's really funny that you mention celiac. My mom said the same thing to me yesterday. I asked the allergy dr and he said that the hives with celiac look different than mine. Did you get hives and how would you describe them?

PrincessLinda, the itching is really driving me nuts. I've slept about 5 hours combined in two days. The meds help a little with the itching and I also bought some Aveeno lotion last night that helps with the itching. It works really good. I haven't seen a dermatologist yet. maybe I should?

Thanks everyone for the nice comments and helpful advice! Not trying to complain here, just looking for solutions.
Thanks!

[Ray4Rick]

I didn't really have symptoms. My endo tested me because celiac causes malabsorbsion and I wasn't absorbing my thyroide meds properly and my results were always off. Even though your allergist doesn't think it's that, you should get checked anyways. Celiac is so mis-diagnosed, you wouldn't believe it. It is said that 1 out of 133 people have the disease and don't know it. My mother used to get rashes all the time and since she found out about me, she started eating gluten free and she hasn't had a rash since. Her dr. didn't want to test her because he said she didn't have enough symptoms to do the testing. So she more or less self diagnosed and she will not eat wheat again.

Let me know what happens if you do get checked.
Good luck.

[rak1978]

Thank you! My next appt with the endo is in 6 weeks. Until then, I'll stay away from wheat. I haven't been eating any "cupboard carbs" anyway, the only major sacrifice I'll have to make is soy sauce....I think. I never really check labels for wheat, just for nuts because my son is allergic. It's probably in more things than I realize. My mom has a hard time with wheat and dairy also....come to think of it, so does my son. Hmmmm....you're probably on to something here.

[rak1978]

one more thing...
the only symtoms I have are the rash and some digestive issues, I have never had a problem with fertility or keeping weight on. I'm on the other end of the spectrum with those things.
You didn't have any symptoms at all?