Angiodema swelling


(Kelley) #1

I discovered keto 3 months ago while searching the internet for information on ways to reduce swelling. I was hoping a ketogics diet would help with the issues I was having. Unfortunately, I had another facial swell attack a few weeks ago that sent me to the hospital. I’ve been referred to an allergist but they suspect Hereditary Angiodema (HAE). Anyone else suffer from HAE facial/abdomen swelling and follow a ketogic diet? Does it help? Thank you.


(Bunny) #2

I saw your post and so curious about this and wondering if my ongoing bile salt experiment would help you with this hmmmm? May be totally unrelated but it is interesting to explore any possibilities?


(VLC.MD) #3

@kelleypk73 did you get into ketosis ?


(Kelley) #4

Yes, I believe I have been in Ketosis. I’ve been testing glucose and ketone levels via blood. My fasting blood sugar stays around 80 and ketone levels are anywhere from.05 and up. I feel the benefits of Ketosis…more energy, less hunger, no more carb/sugar cravings ect. I don’t know if I have tapped into stored fat yet because the swelling of my abdomen and legs makes it very hard to determine. I’m very petite…5’0 105lbs 44 yrs old. I’ve weighed 95lbs my whole life and since the swells started about 1 year ago, I’ve slowly been gaining more. It’s very frustrating.


(VLC.MD) #6

Do you have an epi pen ?
Wonder if you can arrest the process with early epinephrine.

EDIT;

Treatment of angioedema includes histamine blockers (H1 and H2), steroids, and, in those with severe symptoms, epinephrine (intramuscular or subcutaneous). However, hereditary angioedema (HAE) is generally refractory to treatment with these drugs.

:frowning:

Might be worth a try ?

C1 inhibitor treatment sounds effective but it must be expensive.


(VLC.MD) #7

There are clinical trials going on HAE

https://clinicaltrials.gov/ct2/results?cond=Hereditary+Angioedema&term=&cntry1=&state1=&recrs=ab


(Kelley) #8

Yes. The hospital prescribed me epipens but I have not had a swell since. All the other treatments you mentioned I have tried and been resistant too. My family doctor diagnosis me with dehydration so I haven’t gone back to them since. Hopefully the allergist will recognize my situation and have my blood work tested for HAE and I can move on with the other treatments you mentioned. I am grateful my swelling led me to keto. I love keto and will continue regardless.


(Donna ) #9

I don’t know if this will be beneficial to prevent future outbreaks, but I’ll tell you what arrested my chronic hives that I’ve been treating for 3 years.

Two days after Christmas, 3 years ago, I began itching and all over hives. It didn’t stop, I ended up at an allergist, he diagnosed chronic hives. He said, on the bright side, most people with chronic hives don’t have them 5 years later. Gee, thanks.

Anyway, this is what he prescribed me and it suppressed the itch and the hives: 24 hour Zyrtec at bedtime, and 24 hour Allegra in the morning. He said it was okay to overlap them this way, 12 hours apart.

I still take them, 3 years later. I dropped the Allegra, but during allergy season I pick it back up. Maybe something like this would suppress your histamine response enough to not have a bad outbreak?


#10

Hi Kelley, My spouse has Hereditary Angioedema (HAE). His airway swelled shut this year, which was an incredibly intense journey for us. It made us very familiar with the blood disorder. Have they tested your C1 levels yet? It runs in his family and his brother who has HAE has been on the Keto diet (initially for weight loss) but we’ve noticed he swells the least. Of course this could be because of other factors, but we’re considering a Keto trial to see. How has your experience been?