Thursday, April 7, 2011

In the Sky! It's a Bird; It's a Plane....No..Wait.... It's ALPHA GAL!

I am going to introduce you today to something I'd be willing to bet you've never heard of ....

Nope, even though the name conjures images of some twisted sort of dominant super hero chick, there's no cape involved.

Let's back up a bit, shall we?
My food allergies hit me suddenly, and with a vengeance, about 4 years ago.
I have a problem with many foods, including cane sugar, gluten, wheat, rye, dairy, pork, beef and lamb (and now apparently legumes, but we'll get to that later).
The pork and beef allergies (I've never even eaten lamb, so no idea what it does to me) cause some nasty anaphylactic reactions...serious stuff.
Dairy...the reactions were mild before, but I've started to have anaphylactic reactions to milk and cheese also.
Bummer....cheese is one of the foods I miss the most.
And now....all of a sudden, I developed all these annoying digestive issues---pain in my gut, gurgling, strange bowel movements (I know...TMI; sorry).

I mentioned last post that my allergist had called and told me to avoid legumes (and yes, I was most upset with him), but I thought it'd be worth a shot; nothing else was helping, and stranger things have happened (especially in MY body!).

Lo and behold---no legumes=no pain or gurgling!
That means, however, no peanuts or peanut butter (honestly, I don't know how I'll survive this one!), and no beans. Beans were a staple in my diet, as it's been very hard to get protein.
AND it means ditching my most current protein powder....made from a variety of sprouted beans.

For the first week of this new regimen, I thought I was STARVING!
No matter what I ate, by dinner time, I was stumbling around in a daze, completely incoherent.
My poor husband would walk in, take a look at (or listen to) me and promptly fire up the grill for a turkey burger. We've eaten a LOT of turkey burgers over the last couple of weeks!

SO...on to my new super hero status---
My allergist had mentioned to me that there was a recently discovered anti-body that causes people to suddenly become allergic to pork, beef and lamb, having delayed and violent anaphylactic reactions.
It mostly occurs in the southern portion of the US.
And it is caused from a TICK BITE.
Did you get that?
 --wood tick, aka American dog tick--
ugly little devil, eh?

Unlike Lyme disease, which is caused by a DEER tick bite, from what I understand, this anti-body can be triggered by ANY random species of tick.

Folks, I live in the woods.
In warm weather, which down here seems to be 3/4 of the year, it's not unusual for me to pull a tick off my body weekly.

SO.... the allergist tests me for the Alpha Gal antibody (aka galactose-alpha 1, 3)
The reference range is <0.35
Mine tests out at 22.50

What does this mean exactly?
I don't know.
The allergist doesn't know.
The doctor who discovered this phenomenon at the University of Virginia probably doesn't know.
As much as I dislike any of this, I am grateful that this doctor is admitting to me that he simply does not know, instead of stringing me along, or treating me as his guinea pig.

I questioned him about the dairy allergy; he doesn't know, but it's assumed that since it's from COWS, the proteins are similar.
Aside---> apparently the protein in BISON is similar as don't want to know how I found that out.

As I rattle on about being really angry about the bean-thing, the allergist bolts upright in his seat; his eyes get all big and he stops talking....bad sign.
He's just realized that I'm not his only Alpha Gal patient who has become allergic to legumes.
He tells me that the other patient was convinced that his wife was trying to poison him, once he started to try getting more protein in his diet by eating beans!
But, alas *sigh*  The doctor cannot tell me what any of this means.

Another fun fact--- my 14 year old daughter had a delayed reaction to a hamburger late last summer; she'd never had allergies before. Her skin and blood tests showed an allergy to....guess what.....pork, beef and lamb!
Guess what else---I'd just pulled a tick off her in late spring/early summer.

It's such a huge worry, knowing that she's not careful about pulling the pepperoni off a slice of pizza and eating the rest. She didn't have a full-blown reaction that first time; she has NO idea what anaphylaxis is like, or what it can do to you. She's 14....she's invincible.
She keeps her epi-pen with her...MOST of the time.

Speaking of cross-contamination, I guess I just learned a valuable lesson yesterday--- no matter how careful I am about where I eat away from home, it happens.
I sat down to a steaming bowl of refried beans, no cheese at one of the two restaurants I am brave enough to frequent yesterday, only to find a huge wad of BEEF in my mouth!

I'm sorry that I don't have any answers for those of you who might be suffering in this way, but at least I can give this thing a name, and maybe point you in the right direction.
Chances are, your doctor isn't going to know much, if anything, about Alpha Gal, but know that research is being done at the University of Virginia as we speak.

The only advice I can give at this moment, and those of you from the South know that this is basically futile---
Oh, and here's some...ahem...light reading on Alpha Gal and research:

Thursday, March 17, 2011

Getting My Bearings

I knew this would happen.

I knew I'd get all stuck in "what could I possibly have to say that anyone would need to hear?" and "this is so awful and messy; I don't want to whine publicly about this"...or even "I'll share this when I get it all worked out".

Remember those nasty Heffalumps and Woozles in Winnie the Pooh's nightmare, creeping about and waltzing in Pooh's sticky honey?
That's how I feel right now....Trudging through thick stickiness, unable to get it right, unable to drag my hands up to the keyboard to share.
And by the way, that little scene always scared the dickens out of me!

I forget that there must be others out there in similar situations, those who might need even the tiny amount of encouragement that I can give them.

So folks, here I am, back again to whine some more.
I DO have some wonderfully amazing resources to share, as well as some delicious recipes, and my plan is to design this blog so that all are easily accessed. I've added those pages, but I'm still working on adding links. Please bear with me.

Lately this has not been much of the grand adventure I try to see it as.... having my allergist (after "conferring with his colleagues") suggest that I lay off all bean/legume products (WHAT??!! Whatever will I live on??) He then suggested I use Beano if I insisted on eating beans. Beano contains GLUTEN, which causes serious problems for me. AND he suggested I avoid all gelatin products (well there go all the supplements that keep this body running)!!

I can't help but feel that it was pretty darned irresponsible for him to tell me such a thing with no testing to back it up....Seriously, what am I going to eat?? How am I going to get what my body needs to exist if I give up all of my supplements, since it's obviously not getting enough of what it needs from foods??

Sure, I know that supplements are available in vegi-caps, but they are expensive, and I have a cupboard full of my regular supply. I suppose I could empty the gelatin capsules into vegi-caps, but gee whiz, don't I have enough to do trying to survive?!

I've been off my supplements since Sunday, and man, oh man, do I feel rough!
I'm aching all over, feeling weak, not sleeping well, not able to wake up and get moving in the morning *SIGH*
I did wake up to a gurgling gut this morning after eating lots of peanuts yesterday, and my favorite snack last night--- natural peanut butter and raw local honey with sunflower and pumpkin seeds (YUM).
I'm back on my supplements this morning, but avoiding all manner of peanuts  *tear rolling slowly down my cheek*

And in other news, I discovered that when I went in for my "esophageal biopsy", my gastroenterologist, in his zeal to prove me "wrong" and by not bothering to confer with my allergist, biopsied my duodenum instead!!!
Can you believe that?!
The allergist is asking for the original test he'd requested, but I'm thinking I probably need to find another gastroenterologist! Really....wouldn't YOU?
I'm thinking I don't really want that guy back inside my gut....

The good news--- I do not have celiac disease.
That's great, but guess what? I STILL can't consume gluten.
And I STILL don't know why my esophagus spasms painfully, sometimes when I swallow WATER.

Is it any wonder that I am discouraged?
I feel that none of these doctors are really interested in helping me at all.
Because I'm on disability, I have Medicaid for insurance (pfft...what a joke!). Doctors know they aren't going to get paid diddly-squat from Medicaid for their services, so they don't work too very hard to help.
I almost wish that I could just be checked into a teaching hospital with a team of doctors who want to figure me out in order to help others (my kingdom for a House!)

I'm going to wait patiently here today to hear from a doctor's office who is trying to find another gastroenterologist for me, and from another who should have some very interesting lab results for me.
At that point, I will share some bizarre information (and links) with you.

As always, thanks for listening to me BELLYACHE, and thanks for the love and support I feel from all of you!

Friday, February 18, 2011

Healthy DreamWheel

Each month, around the full moon, I create a DreamWheel, or DreamBoard.....sort of a vision board in the round.

Interesting how this month's contained a lot of health-related words and visuals---

Tuesday, February 15, 2011

Might As Well Start Right Here---

 Oh how I've tried to make my first post here perfect!
It somehow just doesn't convey what I mean it to, no matter how I word it.
I so want to be able to help others who might be in the same boat with me health-wise, but 
I suppose there's nothing but just starting right here where I am at the moment.

I'm the 49 year old mother of five, wife to the Canadian, an artist and a writer.
I also happen to have lupus, fibromyalgia, diabetes, and multiple food allergies.
This blog will primarily deal with these health issues, though I feel sure there will be some overlap with the other goings-on in my life, because....well.....that's how life works!

I have dealt with the symptoms of lupus since I was 15 years old, but was not diagnosed until I was 33.
There appears to be some blurring of the line between lupus and fibromyalgia, so who's to say which symptom really belongs where?

I come from a long, long (not to mention BROAD) line of diabetics---mother, grandmother, great grandmother, great aunts, cousins. It would seem that joining their ranks would be inevitable (now I question that assumption, but alas, too late). I was diagnosed with type 2 diabetes in 2000.

Bizzaro symptoms, presumably of fibromyalgia, began in 1987. I thought I was dying.
I had 3 babies under the age of 3, with a husband who worked in New York while we lived in Georgia, and no emotional support.
The symptoms would come and go over the years, and vary in intensity, move from one area to another, but in 2004, they began to progress to the point of becoming completely debilitating. I could not go upstairs in my home to my studio; I had trouble doing much of anything, and started to think I'd soon be in a wheelchair.

The food allergies appeared without warning in 2008.
Suddenly, foods I'd eaten regularly all my life threatened to kill me.
Pork, beef and dairy cause anaphylactic reactions. Gluten and sugar cause less dangerous reactions.
I've recently added corn and almonds to the list.

One year ago I was declared totally and permanently disabled.

One year ago, I started on the path to wellness.

Through this venue, I plan to share my journey---where I've been, where I am today, where I hope to be, what has worked for me, what hasn't. I know there must be others out there who are struggling with the same or similar issues, and I want so much to help them, and to offer them hope!
I know that for a while there, I thought my own situation was hopeless.
I want to offer resources, recipes, insight and encouragement....whatever I can offer to help, or generate hope.

This is a journey, and sometimes it seems slow and arduous.
I hope that you will be patient with me as I learn to be patient and loving with myself.

Are you ready?