1. < Autoimmune Diseases

Mast Cell Activation Syndrome or Histamine Intolerance

Posted by pjrockz88 @pjrockz88, Aug 1, 2024

I will try to keep this short, but does anyone know of a doctor specializing in MCAS or histamine intolerance in the Chicago or northwest Indiana area who accepts insurance? I’m suffering through another sleepless night with painful hives on the soles of my feet and ankles (although they appear everywhere and move around). My whole body is so swollen I’m stuffing myself into clothes. And now I have developed gastrointestinal issues, too. Electrophysiologist says autoimmune issue could be causing tachycardia, He referred me to a local allergist yesterday, but they can’t see me until April 2025! I can’t suffer that long. I hope to order my own blood panel tomorrow as a start, so I won’t take allergy drugs or steroids right now. Also, please bear with me as far as my online responses. I’m holding down 4 jobs to stay afloat, but I do read posts. Thanks in advance!

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lkirnbauer | @lkirnbauer | Feb 20 8:36am
In reply to @pjrockz88 "Thanks for commenting. I have Graves’ which is now inactive. So I get thyroid panels done..." + (show)
@pjrockz88

Thanks for commenting. I have Graves’ which is now inactive. So I get thyroid panels done frequently. I have tried giving up gluten and dairy. I have also tried water fasting. Nothing including a prescription diuretic calms the edema and releases the fluid. Doctors tell me they don’t think it’s lupus even though I have developed what looks like the signature rash. Doctors have also ruled out histamine intolerance, although the hives mimic that. I really need to find a doctor who won’t give up and settle for whatever seems like the most convenient answer. I’m hoping to reduce the number of medications I take and get healthy again. Thanks for your support.

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May I ask how long you gave up eating gluten and dairy? Try it for at least 6-7 months so your body can really adjust. I also have a histamine intolerance and the group of foods called Nightshades are the culprit for me.

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wisfamily | @wisfamily | Feb 20 4:33pm

I would suggest you see General internal med at a larger facility and let them coordinate your care and referrals to specialists based on your symptoms and test results. That is usually the easiest most organized way to work through a tough diagnosis. Not family med but internal medicine.

Chicago has plenty of larger good facilities. Northwestern, U of I, Rush etc.. Stick with one of those. Get a referral for Internal med from your current provider if you need one and get an appt made.

This may not be mast cell at all. Without medical history Id be hesitant to suggest anything else.

If the reaction gets worse or interferes with your breathing , go to the ER.

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