Allergies, Mast Cell Disorder, And Pots

[LindaJoy]

Hi

I'm Lindajoy's husband. We just came home from the hospital Saturday. Lindajoy was in for stomach pain and diaria. She had an Endoscopy done it showed some bleeding in her stomach and they found and removed a polyp in her lower intestine. The docter took biopysis on her stomach and lower intestine and the polyp. The resuts should be back next week. They also took a 24 hour urine sample looking for different chemicals but we don't remember what they said. Her Gastroenteroligist and her GP both think there is some kind of reaction going on but they do not no what it is yet. They brought in her Endocrinoligist and he ordered some more blood work. Lindajoy is having allergic reactions to things she has never been allergic to. For instance, she was brushing her teeth in the hospital and her lips swelled up and the area around her mouth broke out into a rash and her tongue started itching. When she took a shower her eye swelled up. She can't seem to eat anything without causing her throat to feel like it is swelling shut.

Her GP put her on Benadryl 30 minutes before she eats. Benadryl is something that she has used for years becuase of her food allergies but now it seems to make matters worse. More throat sweeling and more Pots episodes. Her GP, Gastroenteroligist, and Endocrinoligist are all out of town for the weekend. They have all been great but to bad the rest of the medical community isn't.

Has anyone had thses types of gastric problems? If it has to do with Mast Cell Activation what has worked for you? Have any of you faced these kinds of allergie problems. Thanks

John, Lindajoy's husband

[MightyMouse]

I've had life threatening allergies for a few years now--if you look at my list of meds, you'll see I'm on a ton of allergy stuff: Advair, singulair, zyrtec, flonase, benedryl, nasonex -- and I've had a few anaphalactic reactions too.

I seem to have gone through a cycle where every medication they gave me caused an allergic response: I have only 2 antibiotic groups that I can take now. I'm also allergic to prevacid and some pain medications. I had chronic hives during most of the escallated period. Now I only get hives from time to time--but I anticipate them every time I take something new, or take an antibiotic. There have been a few times where I needed IV antibiotics that we knew I was allergic too--at which point I was pumped full of steroids and benedryl for the duration.

I never was tested for mast cell disorder--but I know there was a member at NDRF who definitely had it--that was a long time ago though and I've not seen her on their boards for a few years.

Good luck with finding out what's going on. I hope your wife is more comfortable soon--itchiness can be infuriating.

Nina

[mom4cem]

I've not experienced reactions like that except to some medications but I wanted to wish my best for LindaJoy.

I hope she gets some answers soon and something to combat whatever it is that is making her so miserable.

Please give her my best.

[Miriam Poorman-Knox]

I DID have a major positive for mast cells.....Just give me a tree !!!!! My dermatologist is the one that has kept me sane. Maybe oatmeal baths will help. Good luck, make sure you have an epi pen just in case. Miriam

[labas_2u@shaw.ca]

Hi John,

Sorry, I have nothing to offer you in the way of advice, but please tell Linda Joy, I wish her all the best for a speedy recovery or resolution to this nightmare

Maggs

[MightyMouse]

I forgot to add that cool showers are supposed to help with hives --the heat just reactivates the itching and swelling. My doctor also had me using an over-the-counter lotion called Sarna, which was very cooling and soothing--and I also bought tons of lidocaine laced aloe lotion, which made falling asleep possible.

Nina

[LindaJoy]

This is Lindajoy's husband again. The rashes that Lindajoy is getting are causing a burning sensation and not an itching sensation. Does this happen with anyone else? What do you do? Thanks

John

[BEE]

I just wanted to add my two bits..I have also formed major allergies to everything..I am on some meds and trying to control my climate around me as much as possible..I am looking into the mast cell disorder.

My nasal passages completely swell shut..I again have never been allergic to anything til recent. Another thing the digestive issues come and go with me..one minute I cannot go and the next minute I have the runs.

Mostly cannot go. So this is very common is autonomic dys. I will let oyu know anything I find out on the Mast cell.

Good luck and I hope she feels better soon>

Bee

[Miriam Poorman-Knox]

Mine were burning. My docs did 3 biopsies and mast cell disorder was the result. Miriam

[Guest dionna]

i have never been allergic to anything until i got sick but absolutely nothing like your wife. wow i feel horrible for her. i am glad that atleast she has some help from the medical community. we all know that is hard to find. i will pray that all of this will only be short lived and not something she has to just deal with. i think it is awesome that she has you to help her out. i actually want to thank you kind of. i know a lot of people have a hard time with others being supportive and i am just so pleased that she has someone who loves her so much. i don't know anything about mast cell disorder but i did want to let you know that i will be thinking of her and please tell her that we all hope she makes it out okay.

dionna