Alpha-Gal allergy, anyone?

Well what the hell? Sorry I missed the conference this year, I was planning to be there but apparently congestive heart failure had different plans for me. I'm in the hosp. right now- I came in and out of ER I think 4 times between 6/17-7/3, then was admitted 7/4-7/15, back in via ER on 7/16, and then readmitted through ER yesterday. I haven't been in my own home for 12 consecutive hours since 7/4 and it is aggravating the living piss out of me.

What has been the complaint that gets me here is some weird gut thing that remains a mystery, multiple colonoscopies, endoscopies, camera pill, small bowel follow-through, MRI's, MRA's, CT scans, etc. have shown my digestive system to be FINE. Except for that pain that goes from 0 to 10 in under 1 minutes and then lasts until I am knocked unconscious with opiates- it's gone on as non-stop, screaming hysterical pain for as long as ten fricking hours with NO relief, until they med me to unconsciousness. It's that pain that they say brought on the congestive heart failure that hit last week. Happy happy joy joy.

The one and only test that's come back wacky is the "Alpha-Gal" test which seems to indicate that via tick bite I may now have a permanent lifetime allergy to beef, pork, and lamb. CRAP. Dang it!! I'm really going to miss my good Carolina 'cue- good dang thing I like chicken.

Right now I'm being set up an appointment with some hot allergist at UVA who's supposed to be quite knowledgeable on this Alpha-Gal thing, but meanwhile they continue to serve me things like pork tenderloin, which I am dutifully staying away from. It's torture, I tell you. I'm also being set up with a new doctor who's in the same practice as my old one but who has a Holistic practice. Fingers are crossed.

Does anyone else out there have any knowledge of or experience with this? I've done the Googling and read a lot, the part that has me most puzzled is that I'm NOT having any sort of anaphalaxys- just mind-bending, excrutiating gut pain. Ladies? Gents?

Love you all!

omg! That's terrible. I've never heard of that before in my life! For lack of other words I'll say....Good Luck! Can't wait to see how it turns out!

I just finished the consult with Dr. Scott Commins, who is one of the ones credited with discovering the tick bite meat allergy thing. They are absolutely convinced beyond doubt that this is NOT what'd going on with me. No rashes, no diarrhea, none of the swollen bowel stuff that would show in X-rays, etc. They really believe that's not this, which leaves us directly back at square one with absolutely no fricking clue what's going on. NOT a happy gal here.

I don't know what to do. The thought that I might go home and twelve hours later be back in the car heading to ER absolutely sends me into a panic, I CANNOT do that again. Not only because it's killin' Jim, but if that does happen I'm going to need to come here and it's close to a two hour drive from our house to this hospital. I feel like I'm so screwed I just don't even know where to turn.

The allergy folks did say they're going to order a "triptace" test that will give them a baseline number for something, and then next time I have an attack they can re-run the test and it will indicate if this is in fact an allergy, even if they're not sure what to. It'd be a starting place. And they're going to tell the GI folk that it might be worth bringing in neurology, since in some ways this seems to be a short circuit of sorts. I think once they've got the baseline on the triptace test that I'll reintroduce the "forbidden foods" and see what happens- not sure if I'm hoping FOR an attack or for not having one, I just really need some answers.

Meanwhile my EKG went wacky today so they're worrying about that, and my platelet count is in the toilet so they're absolutely freaking about that.

Lib you sure are having a time of it, God love you! I am so sorry. I think it is good you don't have Alpha-Gal but I know you wish you had a diagnosis right now! Know you won't introduce all those forbidden foods at once - how will you do it, one food for a week or 2 and then if nothing happens add another? Wish I could help you out some way - know I'm thinking about you!

Lib this is awful, so sorry! Some thoughts - just in case there is one you haven't explored - have you tried the elimination diet approach in case it is a food, maybe eating only white rice and boiled chicken for a few days something like that? Have they ruled out pancreatitis? My sister in law had a possible sphincter of oddi problem, it's a gall bladder thing I believe.
Where are you these days? Still way out in the country?
Erica

Hey Lib - sorry to hear about all of that. My daughter is having similar issues. She ended up putting herself on a bland diet which helped tremendously. She cut out ALL fatty, spicy, fried foods. Ask me what she can eat? I don't have a clue. All I know is that she will eat salads with fat free dressing and baked or boiled chicken. She has a menu that she sticks to. NO alcohol or caffeine either. She's been to a Gastro, had some tests and got no diagnosis. She is chalking it up to GERD which I didn't believe, but she said a GERD message board describes the symptoms in severe cases which include bloating, pain, reflux, etc.

Hey Sandi. Sadly for me, a diet of nothing but organic brown rice cooked to mush and then chewed 50 times per bite with a splash of organic free range chicken broth STILL brought on an attack. I don't think I can go much blander than that- it really doesn't appear to be a food trigger.

Brown rice will trigger an attack in me (not a morphine requiring attack, but a lot of pain nevertheless) - I have fructose malabsorption and brown rice has fructans which convert to fructose. I can only eat white rice. I only discovered this a couple years ago when the situation had gotten severe, I might have had a mild version for many years.

So just a thought, try white rice and chicken before ruling out diet.

It can take me a week to get back to normal if I eat wrong.
Hugs Lib.
Erica

Hmmm. I posted a reply to some of these other commments that never went up- I think I got the "someone else answered" message, I must not have said "post my reply anyway".

Anyhow, they've looked at my pancreas ("beautiful") and gall bladder ("healthy"), those don't seem to be the problem. I don't plan to worry about slowly reintroducing the "forbidden foods" since they were only forbidden based on an allergy they now say doesn't exist- and at this point I think I'd rather have another attack sooner than later, if it'll lead to an answer sooner rather than later.

White rice huh? I can't rule it out- although the majority of my attacks have not been rice related at all, that's not something I eat... maybe twice a week, and at this point I've had 5-6 attacks in a week several times. Honestly, I got nothin'. I will run that by the allergy folk though, I think we need to leave no stone unturned. Thanks.

Oh, and yeah, one of the lost posts- yep, I still live out in the sticks and LOVE IT, except being such a long drive to ER.

When I first saw your subject line I thought Alpha-Gal was your superhero name now - it would be a good one.
Erica