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Anyone else here deal with Chronic Idiopathic Angioedema?

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Rawss
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Anyone else here deal with Chronic Idiopathic Angioedema?

Postby Rawss » Fri Jul 26, 2019 2:13 pm

Conventional medicine defines this as recurring swelling that happens for no known reason. I have this and I know several triggers for me including food sensitivities, chemical sensitivities, seasonal allergies, any mild physical trauma like burning my tongue on hot food or nicking myself shaving, and stress. I've had issues since childhood and I have never been on ACE inhibitors. Antihistamines including H1 and H2 blockers don't work for me. I'm on a biologic shot called Xolair that is an IgE binder that does work for me.

I'm APOE4/4 and with the 4/4 being pro-inflammatory, I was wondering if there could be a link.

bladedmind
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Re: Anyone else here deal with Chronic Idiopathic Angioedema?

Postby bladedmind » Fri Jul 26, 2019 9:31 pm

Here’s my experience, perhaps not relevant to your circumstances. I first came down with repeated angioedemas upon moving from the Northwest to the Midwest for college when I was 18. Retrospectively, it was caused by my first exposure to ragweed season - I know that because it happened again whenever I happened to be in a time and place when ragweed was a factor. Try going on date with a fat lip!

I had dramatic and frightening cold urticaria when I was 40, retrospectively inferred to be caused by severe mold exposure in an office over several years. It cleared up after I avoided that office and other mold exposures and completed immunotherapy (enzyme potentiated desensitization). I carried an epipen at all times for about ten years. Both series seemed idiopathic at the moment, but turned out to be caused by nonobvious allergen exposures.

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SamNZ
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Re: Anyone else here deal with Chronic Idiopathic Angioedema?

Postby SamNZ » Sun Jul 28, 2019 2:07 am

Rawss wrote:Conventional medicine defines this as recurring swelling that happens for no known reason. I have this and I know several triggers for me including food sensitivities, chemical sensitivities, seasonal allergies, any mild physical trauma like burning my tongue on hot food or nicking myself shaving, and stress. I've had issues since childhood and I have never been on ACE inhibitors. Antihistamines including H1 and H2 blockers don't work for me. I'm on a biologic shot called Xolair that is an IgE binder that does work for me.

I'm APOE4/4 and with the 4/4 being pro-inflammatory, I was wondering if there could be a link.


Hi Rawss, Welcome to our site, I see you have been here for a while, I hope you have managed to find a fair bit of information on the site, as an apoe4/4 I hope you have managed to have a good look through the Primer. I can't help with your query sorry but think that your self awareness of what is and isn't working is a great skill to keep on with working forward, keep asking questions, there is a wealth of knowledge on the site, I hope you get to find some answers you are looking for . Cheers SamNZ
Samantha McBride
Functional Medicine Certified Health Coach


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