Chronic Urticaria

[StacyMartin]

Hello! I have had chronic urticaria (hives all over my entire body) for 12 years and have taken Zyrtec every day just to reduce the hives. I still wake up with a few every morning, but the Zyrtec allows me to function and not suffer on a daily basis. I started eliminating gluten from my diet 2 months ago, and it took me a while to completely eliminate all gluten intake...so I've probably been 100% gluten-free for 1 month. I also eliminated dairy, soy, and yeast. I took a gluten-intolerance blood test at my hospital, and the results came back that I was NOT gluten intolerant. However, I had NO gluten in my system at the time of taking the blood test (my Dr. said I didn't need to have any gluten in my system, but I've read differently).

I feel like the cause of my urticaria HAS to be something I'm eating. And gluten makes the most sense. However, I have not seen an improvement in my condition yet. (I have lots of other effects besides the urticaria: loose stool, angiodema, chalazeons, muscle twitching, Raynauds, Candida outbreaks, fatigue.) There is a history of auto-immune diseases in my family. My father has allopecia (hairless), and my sister has vitiligo (loss of skin pigment).

How long should I expect to suffer from urticaria until my body heals and I stop having hives? A 12-year problem probably doesn't clear up in a couple months of gluten-free eating, right?

Can I start re-introducing dairy back into my diet after my rashes go away? (I miss my ice cream!!)

I feel like a crazy person because I have to explain to people that I'm not eating gluten/yeast/soy/dairy and I don't even know for sure that gluten is the cause of my problem. I want to prove to all these people (my husband included) that gluten is the problem! Please tell me I'm not crazy!

Thanks for helping me.

[pricklypear1971]

Read the dermatitis herpetiformis section on this forum. You may want to try eliminating gluten AND reducing iodine in your diet. Your hives may be DH if you really do have gluten issues.

If your hives respond to iodine withdrawal you're definitely on the right track. If they don't you can still have an issue with gluten or wheat, just not DH.

Good luck!

[eatmeat4good]

I have had DH for 7 years.

The antibodies stay in the skin for a long long time.

It can take some people take up to 2 years strictly gluten free to heal.

The antibodies can stay in the skin for up to 10 years.

I'm one year gluten free and have had great improvement in the rash, but still react violently to trace gluten and iodine.It tends to break out where it has already been.

Ice cream is really bad for me. The carageenan in many ice creams is made from a seaweed which is really high in iodine.

I got glutened a week ago, so I have new blisters and they will last at least 6 weeks.

DH is really sensitive to CC. Make sure you aren't getting traces.

[StacyMartin]

I have had DH for 7 years.

The antibodies stay in the skin for a long long time.

It can take some people take up to 2 years strictly gluten free to heal.

The antibodies can stay in the skin for up to 10 years.

I'm one year gluten free and have had great improvement in the rash, but still react violently to trace gluten and iodine.It tends to break out where it has already been.

Ice cream is really bad for me. The carageenan in many ice creams is made from a seaweed which is really high in iodine.

I got glutened a week ago, so I have new blisters and they will last at least 6 weeks.

DH is really sensitive to CC. Make sure you aren't getting traces.

What is "CC"?

[StacyMartin]

I do not have "Dermatitis herpetiformis".....urticaria is different. I do not have a blistering condition. I've never had blisters on my skin. Urticaria is just raised rashes that come and go in different spots all over the body. One rash never stays longer than 24 hours. They constantly change. And there is an intense itching with the rash.

I am trying something new and it seems to be affecting me so far. I am eating only brown rice for a few days to see if my rashes completely go away, and then I will slowly start eating different foods one at a time to see which ones I am allergic to. I am suspecting corn now, in addition to gluten. I started eating a LOT of corn (tortillas, chips, popcorn) since I gave up all gluten products. Basically, I replaced bread with homemade tortillas.

Thank you for all your comments.

[sa1937]

What is "CC"?

Cross-contamination

Welcome to the forum, Stacy!

[StacyMartin]

Cross-contamination

Welcome to the forum, Stacy!

THANK YOU!!!

[weluvgators]

I found a really interesting allergy book at my library, Reader's Digest Food Allergy Bible, if I recall the title correctly. I was reading the hives section in it because one of my kids has hiving tendencies. They had a suggestion in there that h.pylori should be investigated in chronic hive situations. I had never heard of that before, no doctor had ever suggested it before (including during two hospitalizations last year that were instigated in part by extraordinary hiving display). In frustration we reached out to a doctor group across the country who found our DD had a severe h. pylori infection. We have made some really great progress for her with treatment of her h. pylori infection. We never got to the chronic hiving state (ours lasted just under 6 weeks), but our DD has been gluten free for most of her life. The hiving episode did seem to be triggered by gluten exposure for her, but it is a complicated analysis. Our DD still gets hives from airborne exposure to wheat, and we do our best to minimize those exposures (some specific, horribly designed for a celiac, grocery stores get her bad - like the one with a bakery at the front door - we do NOT test that anymore, happened two of two times since her hospitalizations, and our DD carries an epi for wheat exposure).

It was also critical for our family to evaluate our nutritional status, and we have done some strategic supplementation to help us heal. I hope that you can find some quality medical care to help you navigate this. I think your diet challenges sound like a good step forward in trying to find relief for your chronic hives.

[pricklypear1971]

You may want to look into salicylates also. There are a good number of people with either DH or chronic hives that trigger by them. There's a description of a low- sal diet on the chronic urticaria site.

My DH was diagnosed as chronic idiopathic autoimmune urticaria. It isn't. Mine wouldn't come and go over hours, but it could "deflate" in 24 hours and start to scab and heal quickly, especially on corticosteroids. My point is, we tend to rely less on physician diagnosis and more on symptoms in this forum since most of us have been wrongly diagnosed more than once.

[StacyMartin]

You may want to look into salicylates also. There are a good number of people with either DH or chronic hives that trigger by them. There's a description of a low- sal diet on the chronic urticaria site.

My DH was diagnosed as chronic idiopathic autoimmune urticaria. It isn't. Mine wouldn't come and go over hours, but it could "deflate" in 24 hours and start to scab and heal quickly, especially on corticosteroids. My point is, we tend to rely less on physician diagnosis and more on symptoms in this forum since most of us have been wrongly diagnosed more than once.

I totally agree with you on diagnoses not being reliable. I read through the DH posts and descriptions of what the disease does to ones body, and it isn't what I experience. I have a lot in common with a lot of people with gluten intolerance symptoms, and I feel like I'm getting closer and closer to my cause. I appreciate all your ideas because I'm willing to try anything!

I just read about salicylates and they are in nearly everything!! I hope to God that's not my allergen...

[eatmeat4good]

Open Original Shared Link

Have you checked out this site?

I found it very useful when I thought my DH was Chronic Urticaria.