new allergies discovered: adult

[kwitcherkicken99]

At the end of January I started experiencing tightening in my throat. Having a history of thyroid disease/cancer in my family, I went to the ER and followed up with my family physician. My throat swelled up twice it's normal size (on the outside) and felt like someone was holding their thumb on my windpipe. We chased the thyroid lead (bloodwork, U/S) and hit a dead end. My symptoms subsided and I let it go.

Last week I had another flare up. It was a little one, and my throat went back to normal after a day. The day after that, it swelled to the size it was when the symptoms originally presented, so back to the doctor I went.

We started talking about what was going on and her decision that was it was a food allergy, as that is when the symptoms came out, but we couldn't pinpoint what it was exactly as my symptoms present after a variety of foods: General Tso's chicken, gummy bears, deli turkey (the most recent culprit), mini muffins (another recent culprit)... when I got my epipen script filled the pharmacist said that it sounded like an MSG allergy (but that didn't cover all of the triggers )

I've got appointments with and ENT and an allergist to get this process going, and I was sent home with a script for an epipen. I've never had complete closure of my throat, but it's really uncomfortable. My whole family feels better with me having it for just in case.

I'm having a bit of a flair up as we speak - I ate a swiss roll about 2 hours ago. Now I have a huge lump in my throat...

For those who have hung with me this far (thanks!) and have discovered food allergies as an adult, how long did the testing process take once you got going? We leave for WDW Sept. 25 and I want to make sure I get any food requests taken care of before we leave. I really don't want to spend part/all of my vacation in the hospital. Will I have time to run allergy tests, get the results, and get the info in to Disney in time for an easy dining experience??

We are eating at Akershus (worried - it's lunch, I don't know what to expect food-wise), Coral Reef, Chef Mickey's, Boma (worried - sauces/seasoning), Le Cellier (worried - sauces/seasoning), Crystal Palace, and T-Rex.

Our CS meals are undetermined. Are the CS places fairly receptive to dietary issues?

TIA for any help/info you can share. This is a pretty crazy time trying to get this all figured out.

 

[Tinker'n'Fun]

Sorry about all your problems and I don't have a great answer for you, but I did find out recently that the doctor was able to do a lot of the food allergy testing through a blood test.

Also, not that this is what happening to you, but it may be part of the problem, when my gerd and or nerves act up, my throat gets the lump and closing. I have never swelled though.

I would definetely have the drs. put a little "rush" on your testing though since your vacation is coming up very soon. Good luck, hope it gets answered quickly for you.

 

[kwitcherkicken99]

Interesting thought Tink. She did start me on Omniprednizone (sp?) too, as she figured the ENT and allergist would check there first. I've been on it for 2 days so far. The only time I ever had heartburn was when I was pregnant.

I'll praise my lucky stars if it is just allergies - I can adjust. I've been worried that it is more structural than anything. The changes in my appearance are quite drastic as some times my neck is as wide as my head and extends straight down like the old Far Side cartoons.

I've been really working at dropping some weight before our trip and I've done really good since May - have dropped 12 lbs. Would like to do 10 more before our trip but it's all contingent on me being able to hit the gym!!!

 

[DisneyCruiser83]

Are you allergic to penecillin? (sp) DH is and we found that is can be transmitted through animals. So if you are allergic, and the animal was treated with it, the druggets into your milk/beef/ice cream. It doesn't happen every time you consume animal products, only when an animal has been given a drug.
That is the only time we have encountered an adult allergy, Ihope you find out!

 

[kwitcherkicken99]

I've been okay with antibiotics - never any trouble.

I did speak with the allergists' office this morning and they earliest they can get me in is Sept. 22! 3 whole days before we leave! The good news is that I'll have the results a few hours after the test is run.

Should I call Disney and ask them about last minute food allergies or just play it by ear once we get to the restaurant??

 

[sherabby]

THey can do a blood test now for food allergies. My son has multiple allergies. A skin test is not always accurate. I didn't react to cat or dog on my skin test yet I am severely allergic and a blood test proves it...a cat test proves it too!

 

[Gretchen]

Couple things--
Call the allergist or have your primary doc/ent do it and see if they can move you up since you are having frequent episodes and are going on vacation.
I had been having weird reactions and no one could figure it out. I was 'sensitive' but not 'allergic'. Soooo the skin tests they did on me weren't enough to make me react. I ended up being 'allergic' to grasses and 'sensitive' to practically everything. I'm one of those MCS folks-long story as to how we figured it out and how I can live outside a clean room, but I'm doing better now!
Keep a record of everything you eat, everything--
From what you said you reacted to makes me think a spice--but then the gummies/muffins so then I think maybe the dyes. you really don't want to be eating all that stuff anyway-not good for you and makes you feel yucky.
Good luck--

 

[Evi]

I would definitely continue to follow up with your allergist but also be prepared before you go make sure you bring benadryll childrens chewable or the strips 2 chewables = 1 adult pill. I would also request an epi pen make sure you always have 2 on you. I would also contact dinning and let them know of what you know you are allergic to for you upcoming trip.

Sadly when I last called and requested the number for food allergy requests cm was a little rude. Kept saying oh you can just let them know when you get there and they can tell you what you can and can't eat. When I explained my allergy is to soy and its in alot of hidden foods he god aggravated and started asking the cm next to him if he knew the contact persons name then I heard his say " I keep getting that stupid email with her contact info on it every week and I delete it" Hrm definitely not something you say with customer on the other end. I just hung up and called back and they transferred me to the person I needed to speak to.

But do keep a list of things you can't eat. I also have been getting tightening of throat and it is an allergy for me since it goes away when I take two benedrylls. I can only say keep up with your dr's but be prudent to keep emergency supplies available should your allergy get worse.

 

[hildarumpole]

Which number did you call? There's no excuse for rudeness, but it's not entirely surprising that you'd wind up with a clueless CM. I've had a few when I've called about various topics. I usually end the conversation quickly and call again and talk to a different CM. Most CMs are willing to help, but there are a few bad apples. The best way to reach Disney Special Diets is to email them at specialdiets@disneyworld.com. They are very quick and helpful in responding. They'll email you a list of foods at Disney with common allergen info, plus a form for you to fill out with your ADRs and allergies that is forwarded to the chefs.

 

[Evi]

Thank you so much I will email them today.

 

[Schmeck]

Counter Service has a book with food ingredients - most things there are pre-processed, so it may be near impossible to get things cooked a certain way, without additives.

 

[rustynation]

Are you allergic to penecillin? (sp) DH is and we found that is can be transmitted through animals. So if you are allergic, and the animal was treated with it, the drug gets into your milk/beef/ice cream. It doesn't happen every time you consume animal products, only when an animal has been given a drug.
That is the only time we have encountered an adult allergy, I hope you find out!

Oh, that is seriously disgusting. I was diagnosed with a penicillin allergy ages ago, and I've never thought about things like that. Thanks for the info.

 

[kaytieeldr]

The September issue of Good Housekeeping has an interesting, informative article about allergies (vs. sensitivities), including food - and how, yes, many first present themselves in adults. While it's probably not a good idea to diagnose from a message board/magazine article , it does sound like an allergy.

Since the easiest ingredient comparison would be the gummi bears, mini muffins, and swiss rolls, if the OP has time she might want to go to the supermarket and write down ALL the ingredients in all three products. Then see what they have in common.

 

[kwitcherkicken99]

OP here. I'm assuming it may be a preservative issue.

Update: I've given up all the fun foods. Sticking to raw foods at lunch (salad mostly, just veg no cheese) and only using fresh foods for dinner. Granted it's been great for my waistline, but I still have cravings for those darn swiss rolls! We did dine out yesterday, but picked a place that I know uses only fresh ingredients (gotta love the local stores) and did just fine.

I called my doctor's office on Friday and they said to call first thing today to see if they can move me up. I've got a destination wedding in 2 weeks and I'd love to eat all the fabulous food that will be served! It'll be the only time I'll have decent German faire for a while!

 

[kwitcherkicken99]

Quick update:

Saw an ENT doctor last week (my family doctor wanted to cover all of the bases) and he swears it's reflux and the allergy test won't reveal anything. So he has started me on the prescription version of prilosec. I'm still getting swelling daily, but I know the meds take a while to do what they're supposed to do.

I'm still doing the allergy test because a) insurance covers 100% and b) I want to know anyway.

By sticking to a mostly raw food diet, it's done wonders for my waistline, but I can't do salad everyday for the rest of my life. Hopefully in a week, I'll have some answers and can start finding a suitable diet to live by that meets my needs and won't cause me any trouble!

 

[EDuke98080]

Have you considered wheat/gluten? It's in everything... except "naked" foods as our family likes to call them. Just a thought.

 

[arissavolk]

Sheesh the gummy bears throws me off, but I'm thinking perhaps you could be allergic to soy (it's in mini muffins- I have a soy allergy and I have a problem with em, and obviously soy sauce is in many chinese specialties and soy is used as a filler in certain brands of deli meat)...or maybe some rarer allergy to certain animal proteins (if I recall correctly, many gummy bears contain gelatin, which is derived from bone marrow). One of the easiest ways to tell if you have a soy allergy is try some coffeemate creamer- liquid or powder- if you have problems with coffeemate, you have a soy allergy my friend.

...I'd recommend seeing an allergy specialist or rheumatologist for Ige testing or skin prick testing maybe. It's not 100%, but it can help raise awareness so you can look out for problem foods.

...and I saw a crazy episode of mystery diagnosis with a woman who was allergic to her own progesterone! (Sorry I love that show even though it totally makes me paranoid I'll end up with some crazy rare disease!)

 

[kwitcherkicken99]

Well, the ENT doctor was right in the fact that the allergy test wouldn't reveal much.

The test came back positive for salmon, black pepper, and pretty much every mold known to man... BUT the allergist was the first physician I've seen to say that I had a visually constricted windpipe... FINALLY! SOMEONE NOTICED!!!

I asked him why I would continue to have the pressure if the test turned up nothing. He didn't have much of a response right now, but I am supposed to continue to track my triggers and meet up with him again in a month.

A friend of mine does the plaito diet, so I think I'm going to look into that and see how I feel. Hopefully everything will get straightened out. I'm still not convinced that I can no longer tolerate preservatives. The fresher the food I consume, the better my chances of not swelling. If I grab something to go or out of a box, I have a reaction. Heck, I even reacted to my favorite beer the other night.

 

[EDuke98080]

Well, the ENT doctor was right in the fact that the allergy test wouldn't reveal much.

The test came back positive for salmon, black pepper, and pretty much every mold known to man... BUT the allergist was the first physician I've seen to say that I had a visually constricted windpipe... FINALLY! SOMEONE NOTICED!!!

I asked him why I would continue to have the pressure if the test turned up nothing. He didn't have much of a response right now, but I am supposed to continue to track my triggers and meet up with him again in a month.

A friend of mine does the plaito diet, so I think I'm going to look into that and see how I feel. Hopefully everything will get straightened out. I'm still not convinced that I can no longer tolerate preservatives. The fresher the food I consume, the better my chances of not swelling. If I grab something to go or out of a box, I have a reaction. Heck, I even reacted to my favorite beer the other night.

Please get checked for Celiac/wheat/gluten.... It's in all the things you mention you react to... even the beer. There are some blood tests but they can come back false negative but it is a good place to start. I hope you figure things out soon and are ok!

 

[kwitcherkicken99]

I'll double check that wheat/gluten was on that test. The plaito diet eliminates gluten so if I follow that and do well, we'll probably check it just to be sure.

I am armed with all the documents the special diets folks sent over, so I feel really confident for our trip.