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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md11 | @md11 | Feb 17 1:11pm
In reply to @pjrockz88 "Thanks for responding. I remember taking cromolyn sodium decades ago for asthma. Which type of doctor..." + (show)
@pjrockz88

Thanks for responding. I remember taking cromolyn sodium
decades ago for asthma. Which type of doctor prescribed it for you? I want to suggest it to my medical team. I am so touched by the resilience of the patients responding on this thread. That, alone, gives me hope.

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Immunologist at Brigham Mass General. My philosophy is that one must be open to everything. Try it, if it doesn't work go on to the next. Getting doctors to agree is sometimes difficult. As hard as it is finding a doctor that will listen, keep looking until you find one or more you are comfortable with. If you give up you will never get better.
When you feel good, push. When you don't, stop and don't beat yourself up. Hardest thing is to accept you can't do as much as before but you still can do what is important.
My best to you.

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1 reply
md11 | @md11 | Feb 17 1:18pm
In reply to @md11 "Immunologist at Brigham Mass General. My philosophy is that one must be open to everything. Try..." + (show)
@md11

Immunologist at Brigham Mass General. My philosophy is that one must be open to everything. Try it, if it doesn't work go on to the next. Getting doctors to agree is sometimes difficult. As hard as it is finding a doctor that will listen, keep looking until you find one or more you are comfortable with. If you give up you will never get better.
When you feel good, push. When you don't, stop and don't beat yourself up. Hardest thing is to accept you can't do as much as before but you still can do what is important.
My best to you.

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PS: Do whatever you can to get a referral to an immunologist. Beg, cry, get PCP to insist. See any doctor or Nurse Practitioner in the office and tell them to consult with the physician of your choice. Be creative and tenacious. You must advocate for yourself. This is your prime mission now. My heart goes out to you and all sufferers.

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ggr | @ggr | Feb 17 2:49pm
In reply to @pjrockz88 "Thanks for chiming in. I do feel as though I must get the shots on time..." + (show)
@pjrockz88

Thanks for chiming in. I do feel as though I must get the shots on time or else I get little hives. No, they have not suggested cromolyn sodium. I will definitely look into it. I also wonder if hormones might play a role.

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My daughter is convinced that hormones are involved--but does not know how.

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lkirnbauer | @lkirnbauer | Feb 18 7:40am
In reply to @pjrockz88 "Yes. My allergist believes I have some type of autoimmune disorder, but she is unsure about..." + (show)
@pjrockz88

Yes. My allergist believes I have some type of autoimmune disorder, but she is unsure about which one. Back to the drawing board.

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Why doesn’t she just run some labs? Pretty simple…

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1 reply
ggr | @ggr | Feb 19 8:28am
In reply to @pjrockz88 "Thanks for responding. I remember taking cromolyn sodium decades ago for asthma. Which type of doctor..." + (show)
@pjrockz88

Thanks for responding. I remember taking cromolyn sodium
decades ago for asthma. Which type of doctor prescribed it for you? I want to suggest it to my medical team. I am so touched by the resilience of the patients responding on this thread. That, alone, gives me hope.

Jump to this post

My daughter has an allergist in the Alexandria, VA area who treats mast cell activation.

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ggr | @ggr | Feb 19 8:29am
In reply to @lkirnbauer "Why doesn’t she just run some labs? Pretty simple…" + (show)
@lkirnbauer

Why doesn’t she just run some labs? Pretty simple…

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There are no labs for mast cell activation if that is the problem.

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1 reply
ggr | @ggr | Feb 19 8:33am

There is a mast cell activation page on FB that is no longer active, but last time I looked it is still up. It has a file with the names of physicians by state that have been submitted by patients that followed the site.

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lkirnbauer | @lkirnbauer | Feb 19 12:36pm
In reply to @ggr "There are no labs for mast cell activation if that is the problem." + (show)
@ggr

There are no labs for mast cell activation if that is the problem.

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No, but your doctor could run a Thyroid Panel and test T3-Free, T4-Free, TPO Antibodies (sounds like you may have Hashimoto’s disease with the hives), and TSH Levels. I suffer from Hashimoto’s and had hives until I stopped eating gluten, dairy and soy. Gone, poof! It’s like magic, but people don’t want to hear that they should stop eating these things, but they are the very things that make our bodies go bonkers! Give it a go, it does work!

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pjrockz88 | @pjrockz88 | Feb 19 1:24pm
In reply to @lkirnbauer "No, but your doctor could run a Thyroid Panel and test T3-Free, T4-Free, TPO Antibodies (sounds..." + (show)
@lkirnbauer

No, but your doctor could run a Thyroid Panel and test T3-Free, T4-Free, TPO Antibodies (sounds like you may have Hashimoto’s disease with the hives), and TSH Levels. I suffer from Hashimoto’s and had hives until I stopped eating gluten, dairy and soy. Gone, poof! It’s like magic, but people don’t want to hear that they should stop eating these things, but they are the very things that make our bodies go bonkers! Give it a go, it does work!

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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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1 reply
ggr | @ggr | Feb 19 2:52pm
In reply to @lkirnbauer "No, but your doctor could run a Thyroid Panel and test T3-Free, T4-Free, TPO Antibodies (sounds..." + (show)
@lkirnbauer

No, but your doctor could run a Thyroid Panel and test T3-Free, T4-Free, TPO Antibodies (sounds like you may have Hashimoto’s disease with the hives), and TSH Levels. I suffer from Hashimoto’s and had hives until I stopped eating gluten, dairy and soy. Gone, poof! It’s like magic, but people don’t want to hear that they should stop eating these things, but they are the very things that make our bodies go bonkers! Give it a go, it does work!

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It is my daughter who has Hashimoto's, mast cell, and Ehler's Danlos. .

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