First it was corn and chicken
I can’t even begin to tell you how happy I am to have found it.
I’ve been struggling with food allergies for 7 years now, first it was corn and chicken (I live in Mexico, so it was a bit of a problem), then 3 years later it was cows milk, canned foods, tuna and egg yolk. So I’d get a very upset digestive system and maybe some hives, but the hives weren’t all that common, until they started happening more often.
My allergies always seemed to flare up for a year and then they’d disappear and others might appear in their place, which always seemed to me like there was probably a bigger issue and we were just treating symptoms.
It’s been about a year since my last food allergies went away, and then around 6 months ago I started getting hives everyday, no matter what I ate, and there I went, back on antihistamines.
I don’t even know how many times I’ve changed allergy doctors, none of them seemed to want to dig a little deeper than a simple scratch test and then Zyrtec and eliminating everything I’ve ever been allergic to, even if I don’t have a reaction to them anymore. If I still got hives, they’d just raise my antihistamines and tell me it was probably my fault for eating something I shouldn’t have, or maybe for touching a kitty. I hate the fog, the hunger, weight gain and everything that comes with antihistamines.
A friend’s mom, who is a great and well respected doctor here, checked me out yesterday cause the hives got worse these days since I’ve been taking antibiotics and told me it sounded more like I had CIU, and recommended I see an immunologist because we should be looking elsewhere at this point. That these are more likely symptoms of something else.
I’m just so jaded by my experiences with other doctors and their lack of knowledge or interest that in a way I don’t even want to go through it again, everyone thinks I’m exaggerating or faking it, other than my friend’s mom, I just haven’t managed to make doctors listen to me.
How can anyone get properly treated when so few people are open to believing in the existence and gravity of our symptoms?
I’m super hopeful, but also pretty discouraged and tired. I’m sorry for the long post, I’m to itchy to go sleep.
Anne Camille Jongleux
Go to the FILES section of this forum and read the articles posted. Start with the 3 I have circled on attached photo. The provider one is very helpful, but very long, yet it is worth it. Definitely go to whoever your friend’s mom recommends. It’s important to find a doctor who understands this condition. Remember that this diagnosis is one of exclusion; that is, they will eliminate other possibilities first. I’m not a doctor but it sounds like your “food allergies” were not truly allergies as they would not have gone away. Often people with CIU react to allergy tests with false positives. Some here find relief (but not a cure) through regulating their diet, but they are not allergic to food. Some foods are high in histamine and sometimes their consumption can make your symptoms worse. But, first, it is important to get a proper diagnosis and treatment plan. Sometimes treatment can be tricky – a lot of trial & error. I have personally found that increasing the amounts of antihistamines on a regular basis is not worth the trade off between brain fog and lessening of symptoms. That is, I’ve found what is a tolerable amount of hives without brain fog. If I increase meds, my hives only decrease a little bit but the fog is so much worse. But that place – and the right combo of drugs – is very individualistic and will be different for everybody. Find a doctor who will work with you on this instead of one who just wants to say “take these & deal with the fog”. I am not on Xolair but many here have found it a game changer. Discuss this with the immunologist and what steps you need to do to get on it, even if you are not sure that is what you want now. For many, they have to document their condition before it is approved so you might as well start out knowing what is needed in case that is the route that is best for you. Good luck.
I’m glad you’ve found this group. I am new here as well and I no longer feel alone. This is such an isolating condition, even though hives seem to be so common…and everyone here is focused on making it through the hard days, supporting one another, and providing ideas or resources. I also have an immune disorder and I have found I am my own expert and my best advocate – I do everything I can to stay informed and I find doctors who will partner with me as an active part of my treatment. I hope you are able to find a partner too.