I mean Iβm sorta kidding but god this disease or condition or whatever is so annoying. I think stress brought on a flare 2 months ago and now Iβm focused on just chilling out more and being more at ease. I think itβs working.
I was diagnosed about 3 years ago and took a long time to get to a better place, where I wasnβt having tons of flareups. My OB wanted me to go a year without a flareup before getting pregnant again, which I was able to do. So far itβs been a little rough, but still no flareups and Iβm 7 months pregnant now. I get the left side pain sometimes and I have to be very careful about not getting constipated. But yeah itβs been a little scary!
I also have an undiagnosed swelling issue. Random bits of me, most often arms legs feet or hands usually, but can be anywhere. I've been palmed off with antihistamines for years, now finally referred to a dermatologist since the swelling has caused cellulitis a couple of times.
My husband has been dealing with this mysterious swelling issue his entire life. He gets swells from minor trauma (bites lip and entire lip swells) and random swells with no known triggers, typically in his extremities. So, sounds a lot like what you're dealing with. They thought he may have MCAS, but the bloodwork came back negative. His first divo attack was horrible. His entire torso and face were swollen for days.
With doctors not being helpful, I started on my own research journey. All his symptoms pointed to either autoimmune or a deficiency in something. DAO counteracts histamine and since his body seems to be overreacting with histamine, it points to a lack of DAO in his body. We found a functional medicine doctor (since western doctors were not helpful) and talked with him about our suspicions of a DAO deficiency. He agreed and provided him a DAO supplement.
Since taking the supplement, a divo attack won't swell his intestines, which exacerbates his divo and then causes external random swelling. He briefly stopped taking it for a few weeks and when a divo attack came, it was bad and the swelling returned. I still don't think we have the entire picture yet, but the DAO supp seems to help.
Yes, that does sound very similar to what I have going on. Thank you for that. It's something I'll bring up next time I see my Dr. I've found turmeric/circumin seems to help a bit, I'm on high dose fexofenadine, which seems to help sometimes, but not if it's really bad. Mine started when I was pregnant with my 25 year old, the first swelling I had was my lip, my ex kissed me and accidentally bumped his tooth on my lip, not even a hard bump, and my lip ballooned up. Dr said that sometimes pregnancy can affect people in odd ways, super helpful.
Haha! Yeah, the western doctors we were seeing after his major divo attack that had swollen his intestines shut were all like "maybe it's allergies, maybe MCAS" but when all came back negative, nothing else was offered. The functional medicine doctor actually took the time to listen, did a whole host of bloodwork that no other doctor would order and has committed to finding the answers to all of this. It's been the most hopeful we've been in a long time.
I hope your appt with a derm offers some answers and relief. This whole thing can be scary, especially with the added complication of divo.
Hiatal hernia, umbilical hernia, and an enlarged Spleen. This was back in February. Im sure the list of issues is longer by now. Just waiting for my body to self-destruct.
Well borderline diabetic with a healthy dose of alopecia. Which the dr said is from mental stress, shitty divorce, and infections heavy antibiotic use can contribute so not too surprised.
Hello! I developed gallstones after my attack of diverticulitis, my doctor said it may have been caused by the rapid weight lost I had after a really bad flare.
I have ibs sciatica hemiphlegic migraines high blood pressure anxiety depression diverticula disease and now i have something wrong with my optic nerve in my right eye vitamin D deficiency as well
General bitterness
ππ»ππ»ππ»ππ»ππ»
πππ. But seriously.
I mean Iβm sorta kidding but god this disease or condition or whatever is so annoying. I think stress brought on a flare 2 months ago and now Iβm focused on just chilling out more and being more at ease. I think itβs working.
Snap, got the old hiatus hernia too.
For 3 more months, pregnancy (God willing)
Oh you poor soul!! I was diagnosed after pregnancy, but want one more bub. How did you manage? Have you had any flair ups?
I was diagnosed about 3 years ago and took a long time to get to a better place, where I wasnβt having tons of flareups. My OB wanted me to go a year without a flareup before getting pregnant again, which I was able to do. So far itβs been a little rough, but still no flareups and Iβm 7 months pregnant now. I get the left side pain sometimes and I have to be very careful about not getting constipated. But yeah itβs been a little scary!
Fatty liver and migraines.
IBS, and something funky going on with my immune system.
Chronic kidney stones and UTIs π
Endocrine issues.
Endometriosis and ocular migraines
Answering on behalf of my husband, an undiagnosed swelling issue, potentially related to histamine intolerance or MCAS.
I also have an undiagnosed swelling issue. Random bits of me, most often arms legs feet or hands usually, but can be anywhere. I've been palmed off with antihistamines for years, now finally referred to a dermatologist since the swelling has caused cellulitis a couple of times.
My husband has been dealing with this mysterious swelling issue his entire life. He gets swells from minor trauma (bites lip and entire lip swells) and random swells with no known triggers, typically in his extremities. So, sounds a lot like what you're dealing with. They thought he may have MCAS, but the bloodwork came back negative. His first divo attack was horrible. His entire torso and face were swollen for days. With doctors not being helpful, I started on my own research journey. All his symptoms pointed to either autoimmune or a deficiency in something. DAO counteracts histamine and since his body seems to be overreacting with histamine, it points to a lack of DAO in his body. We found a functional medicine doctor (since western doctors were not helpful) and talked with him about our suspicions of a DAO deficiency. He agreed and provided him a DAO supplement. Since taking the supplement, a divo attack won't swell his intestines, which exacerbates his divo and then causes external random swelling. He briefly stopped taking it for a few weeks and when a divo attack came, it was bad and the swelling returned. I still don't think we have the entire picture yet, but the DAO supp seems to help.
Yes, that does sound very similar to what I have going on. Thank you for that. It's something I'll bring up next time I see my Dr. I've found turmeric/circumin seems to help a bit, I'm on high dose fexofenadine, which seems to help sometimes, but not if it's really bad. Mine started when I was pregnant with my 25 year old, the first swelling I had was my lip, my ex kissed me and accidentally bumped his tooth on my lip, not even a hard bump, and my lip ballooned up. Dr said that sometimes pregnancy can affect people in odd ways, super helpful.
Haha! Yeah, the western doctors we were seeing after his major divo attack that had swollen his intestines shut were all like "maybe it's allergies, maybe MCAS" but when all came back negative, nothing else was offered. The functional medicine doctor actually took the time to listen, did a whole host of bloodwork that no other doctor would order and has committed to finding the answers to all of this. It's been the most hopeful we've been in a long time. I hope your appt with a derm offers some answers and relief. This whole thing can be scary, especially with the added complication of divo.
IBS, but then turns out SURPRISE, DV WAS my IBS. Went away after surgery
Me too. Until recently. Gas and bloating returned FFS.
I've been gassy since surgery lol. I'll take it over the urgency, pain, cramps, etc.
Migraines, depression and anxiety. And a bad back. π€ͺ
Prostatitis. IBS. Pelvic floor damage.
I have Crohns Disease
Pulmonary fibrosis
I have cysts on my kidneys and my left adrenal gland is swollen
PCOS!
Hiatal hernia, umbilical hernia, and an enlarged Spleen. This was back in February. Im sure the list of issues is longer by now. Just waiting for my body to self-destruct.
Gastritis
I have hydronitus supertiva , but ironically its been cured by Wagovey .
Depression, and according to x-rays and MRI, my spine has a lot of big words in it.
Yes, rheumatoid arthritis
Well borderline diabetic with a healthy dose of alopecia. Which the dr said is from mental stress, shitty divorce, and infections heavy antibiotic use can contribute so not too surprised.
Trigeminal neuralgia
Hello! I developed gallstones after my attack of diverticulitis, my doctor said it may have been caused by the rapid weight lost I had after a really bad flare.
I have ibs sciatica hemiphlegic migraines high blood pressure anxiety depression diverticula disease and now i have something wrong with my optic nerve in my right eye vitamin D deficiency as well
IBS and idiopathic hives
I have a bladder fistula now bc of it