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04/11/2012 07:15 PM

Eosinophilic Gastroenteritis (Say it 3 times fast)

LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

If I spelled that right, I want a prize.

I had this horrid intestinal illness before my diagnosis. 11 memorable days in the hospital...10 for them to figure out what I had. The treatment is high dose steroids. It's something they tend to see in undiagnosed Addison's, although it does occur in "normal" people, too. They found my low (non-existent) cortisol before they found the e.g. But once they found the cortisol issue, they went directly for the upper gi and found e.g. right away. They knew what it was.

All this to say...I've had some issues the past week and a half to two weeks; it's come on so gradually I'm not even sure. (And Doc is not sure if my headaches are related or not.) Yesterday I had to go to the doctor and have two bags of IV fluids and a shot of steroids. I was very dehydrated. I have been quite ill, but it hit me hard Monday night. I didn't eat or drink Monday, and I was fine at work. I came home & had four bites of Chex Mix, and I ran for the bathroom. A lot of things seemed very similar. To make a long story short, doc told me it's either e.g. or a more resistant gi yeast infection. To avoid unnecessary torture, they are treating both. I need high dose steroids no matter what, so that treats e.g., and with my history, the diflucan won't hurt me.

I don't get why I would be getting this again. She has two other patients with e.g. right now, neither of whom have AI. It's not a common infection. And it's a terrible, horrible thing. It would be a LOT worse if I were not already on steroids. I spent 16 days last time wanting to DIE, thinking I was GOING to die. I counted my life in 2 hour intervals (the time between alternating phenergan & zofran shots). Fortunately this time it's not as bad, but it's still crappy. Somehow I'm pushing through. I took off yesterday, but I dragged myself to work today, and I will go tomorrow. (The only reason is I work in a super low-stress environment where I sit on my butt all day, where I can crawl under my desk and sleep if I need to. They won't hold it against me.)

I'm also running fever, which fits with nothing. And I NEVER run fever, much less over 100.

The drugs have already stopped the main problem. Now I'm just tired. But I'm drinking a lot, eating decently, sleeping well. I just need to recover.

Funny thing, my boss today..."So, those fluids yesterday, you tolerate those okay?" "Uh, yessir!" "Good. Can you be here at 7:45 in the morning?" "Ugghhh. Really?" No sympathy in this place! LOL (MY boss is super-understanding, so this was really, really funny.)

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04/11/2012 11:04 PM
ButtonButton
ButtonButtonPosts: 1148
Member

Well . . . I did try to say Eosinophil Gastroenteritis 3 times quickly . . . and I was "tongue tied."

Truly, what you are going through sounds miserable. I hope that you are on a pathway to better health.

Sending you light and best wishes,

- Karen -

Post edited by: ButtonButton, at: 04/11/2012 11:05 PM


04/12/2012 06:02 AM
Footprints11
Footprints11Posts: 391
Member

Sounds awful, but hopefully the treatment will help both with the GI symptoms and with your awful headaches!

I actually had never heard of EG until a month or so ago when I saw the GI doc and he suggested that as a possibility for my problems (nothing like what you are experiencing!). So, I don't know much, but my understanding is that it's not an "infection" but, rather, an overactive immune response which, as you know, happens in us with AI. My guess? A vulnerable window of time (low cortisol and/or overtaxed system) combined with exposure to an allergan or irritant.

Is your head feeling better, too? I hope so!


04/12/2012 08:09 PM
hypomama
hypomama  
Posts: 772
Member


04/13/2012 12:42 AM
Claire78
 
Posts: 389
Member

The pain and sickness from gastritis is horrific! I too thought I was dying! Have you been tested for food intolerances? It seems as though quite a few adrenal patients have them...

04/13/2012 06:26 AM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

I will look at this tonight, hypomama. Thanks.

Yes, Claire. And eosiniphilic infections are nasty and nasty! I was tested for all of that pre-dx, when they couldn't figure out what was wrong. In fact, I was put on the gluten-free diet two days or so before I was dx just because they couldn't figure it out. However, with the diagnosis, and because all of my tests were negative, we threw that out. I may have to revisit the issue, though. I don't know. SOmething to think about.

I really, really don't want to go back to a GI doc. I do not like GI docs. I have had four. They make me cry. And I never cry. Sad


08/09/2012 11:12 AM
holladaymtm
Posts: 1
New Member

I have had this since I was a 11 caused by a seizure medicine I had taken all my life. But i have had serious bouts of it and over the past couple years I have found a few all natural remedies that can help resolve its effects during flare ups and prevent it from flaring up. Manuka Honey has been good rrmedy but it tastes horrid to me. My favorite and one that works better than any medicine is ororless and tasteless Aloe Vera Juice. I just wanted to share that as I know the excruciating illness and its effects. Thank you for allowing me to share this with yall.

08/10/2012 05:22 AM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

Thank you. I will keep that in mind.

It turned out Claire was right. After four long months and an eight day hospital stay, I decided to try giving up gluten, even though all my tests were negative, I was at my wits' end, on the verge of a feeding tube. I quit getting violenttly ill when I ate...within three days I felt new again...now a month later I feel better than I have in years!

I had tried at some point over the years avoiding every other food group except gluten, because it's so difficult to do. Desperate times and all that. My internist is impressed. But I'm better and that's all that matters. Looking back we now see so much evidence. Craziness!

Cynthia


08/10/2012 06:32 AM
mamame
Posts: 208
Member

Cynthia - so glad to hear you are still feeling great off of gluten. Gluten is a truely evil thing and I think it causes so many more health problems than people ever realize.

08/13/2012 01:57 AM
Claire78
 
Posts: 389
Member

Just to update: Ive been gluten free since Easter and I've lost 11 pounds! I spent 3 weeks in the south of France and my weight loss has been stable. Considering that I have pcos, this is really an achievement!

I just want to advertise a website called elana's pantry where you can find delicious gluten free recipes (paleo friendly too). They are all low GI and easy to make. http://www.elanaspantry.com/

Enjoy!

C

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