type 2 hereditary angioedema

[AlpineX2]

I’ve been sick for a long time was diagnosed with MCAS based on symptoms never had elevated tryptase etc...

also tested positive for pots and dysautonomia from a tilt table test and a elevated gad65 blood tests.

I also have small fiber neuropathy confirmed from a punch biopsy.

I live on formula and I’m unable to eat food because the severe stomach swelling and facial angioedema and anaflaxyis. I respond well to antihistamines and I’m on the typical mcas pill regime.

but if I ever try to eat food something as simple as plain white rice I will get facial angioedema and awful stomach pain etc... and this is something that lasts 3 - 5 days for my


I saw a new allergist and he tested me for a bunch of stuff I’ve never been tested for before.

I had an extremely low complement c4c it was a 6.

he diagnosed me with type 2 hereditary angioedema, I know very little about this disease. And when I google it, I see some severe facial swelling. Now my face will swell and get puffy it’s not to the severity of the picture I see. And I’ve had my throat close up but was always due to food and environment and the angioedema would happen no matter how many antihistamines I was on.

question is can you have HAE without the crazy swelling you see online.
or is there another Reason for a low c4c. Thank for any advice

Oh and my COMPLEMENT, TOTAL (CH50) blood test was elevated.

 

[AlpineX2]

bump

 

[Gingergrrl]

I am bumping this thread in the hope that someone will see it who might have some ideas. I wish I was able to be of more help and relate to so much of what you shared. I forgot, did I ever give you the names of the FB groups for MCAS via PM? They were an invaluable resource to me back in 2015 & 2016 when I was having anaphylaxis and allergic to all food (at that time).

I’ve been sick for a long time was diagnosed with MCAS based on symptoms never had elevated tryptase etc... also tested positive for pots and dysautonomia from a tilt table test and a elevated gad65 blood tests.

I could have written this myself a few years ago (MCAS minus elevated Tryptase, POTS on two tilt table tests, and elevated GAD65 on blood tests).

I live on formula and I’m unable to eat food because the severe stomach swelling and facial angioedema and anaflaxyis. I respond well to antihistamines and I’m on the typical mcas pill regime.

Do you get facial angiodema and anaphylaxis from the formula or only from food? I never had facial angiodema (maybe a few very minor incidents in 2015 as part of anaphylaxis episode) but in general, it was not part of my standard ANA reaction at that time.

When I was hospitalized in 2015 for anaphylaxis, I was not able to have formula (by mouth or tube) b/c the doctors said that I would still be allergic regardless if it was a formula or food. The only thing that turned it around for me (short-term) at that time was IV Benadryl and then high-dose IVIG put it into remission and it has never returned.

But in your case, since it is hereditary (HAE) and not autoimmune, I am not sure if IVIG or other treatments for autoimmunity would make any difference? What does your new allergist recommend? Has IVIG been discussed?

question is can you have HAE without the crazy swelling you see online. or is there another Reason for a low c4c. Thank for any advice

I don't know the answer but am hoping someone else will see this or that you can ask in one of the private FB groups for MCAS and related issues.