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Author Topic: Adult Onset Diagnosis... Kind of?  (Read 4490 times)

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xyentruocx

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Adult Onset Diagnosis... Kind of?
« on: June 11, 2012, 10:25:22 AM »
Hello all!

First, thanks to everyone who answered about the soap issue: I went with Dove Sensitive Skin bar soap and so far (about 5 uses) so good  ;D.

My next question is a bit more involved and explains the whole story:

About 2 years ago at work I was eating a brownie that had nuts in it (not sure what kind) and felt a weird sensation in my throat. No itching, no hives, no redness, just a strange pressure that didn't last very long at all. I felt anxious about it - but I also have Generalized Anxiety Disorder, so ... I feel anxious about everything (Ha.... ha). I thought nothing of the incident since it was over just as quickly as it started. A couple weeks later, I was eating a banana-nut muffin (I assume the nuts were walnuts, but again I'm not sure), and felt the same sensation. I decided, at that point I should possibly call my doctor.

I made an appointment with a very well respected allergist in the area, and had all the necessary testing done within a few weeks of the "reactions." Skin prick tests were negative to everything (they did all tree nuts, peanuts, and a variety of other foods) - except some seasonal allergies which came back with veeeery mild results. RAST testing also came back negative for all tree nuts, peanuts, and sesame. I even, at one point, did a food challenge with Walnuts in the office (since I think that's what was in the muffin and brownie) and passed that (uhm, minus the panic attack it induced).

Prior to all of this I had been drinking Hazelnut coffee every day, snaking on apples with peanut butter, eating almonds as snacks - practically ingesting nuts EVERY DAY. All sorts of nuts (and peanuts). In fact, a few weeks before the first weird "reaction" I had been at my aunts house where she always keeps a bowl of (shelled) nuts on the table, and having a great afternoon cracking and eating the nuts and chit-chatting with my cousins.

I've also had the skin testing re-done since the original results all came back negative (so basically I've been tested 1x/year).

But now, I am living my life in fear - even though, by all accounts, I am not allergic to anything. My allergist prescribed be an epipen before we did any tests (just in case) and has advised that I continue to be cautious since tests are not 100% positive. Of course, I assume that my allergist is covering his own bum and does not want to be sued if I do have some sort of reaction down the line, but I'm just so confused on everything.

How reliable are skin prick tests and RAST tests? The rational part of my brain wants to let my guard down a bit, but the anxious side of my brain has basically taken over - I'm living my life in fear, as I mentioned, and have completely altered all of my former habits (rarely eating out at restaurants, keeping a STRICT diet of "safe" foods because I am so afraid of cross-contamination, not even touching the refrigerator door because I'm afraid someone else in my home as touched it after eating peanut butter or something). I've actually sought psychiatric treatment for all of this because it's made my anxiety off the charts and has developed into clinical Obsessive Compulsive Personality Disorder (which is a bit different than regular OCD).

To make matters "worse" - around the same time the allergy thing happened, I was diagnosed with LPR, which is a weird form of acid reflux that is "silent" reflux - basically, the top sphincter muscle in my throat does not work, and the acid comes up into my vocal cords. I often get esophogeal spasms, voice horseness, and even ear aches from it.

My allergist (and general practitioner) think that the first "reactions" I had to nuts might have actually been my acid reflux, since I was eating pretty "dry" foods that would cause my throat to constrict in one of it's fun little spasms, but since I hadn't been diagnosed with that yet, I obviously didn't know.

... basically, I'm completely confused and looking for some guidance/support/advice. My family and boyfriend are of the opinion that if the tests are negative, then I am not allergic and I am fine - but I just can't seem to believe it...

Offline Ra3chel

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Re: Adult Onset Diagnosis... Kind of?
« Reply #1 on: June 11, 2012, 11:34:27 AM »
SPT and RAST both have really high false-positive rates. Based on what you're describing--and the other stuff you mention, the anxiety and the reflux--it seems like it might be worth asking your allergist about a double-blind food challenge for confirmation.

ETA: I'm not a medical professional, check anything you learn online with a board-certified allergist, &c.
« Last Edit: June 11, 2012, 11:36:48 AM by Ra3chel »
The 3 is silent.

Offline rebekahc

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Re: Adult Onset Diagnosis... Kind of?
« Reply #2 on: June 11, 2012, 01:07:30 PM »
Yes, what Rachel said.  The false POSITIVE rate is about 50% for both tests.  However, the false NEGATIVE rate is only about 10%.  If you tested negative on both skin and RAST, chances are greater than 90% that you are indeed negative.

I do think your doctors may be on to something with the possibility of it being reflux/esophogeal (sp?) spam related - especially since the brownie and muffin are both similar in consistency.
TX - USA
DS - peanut, tree nut, milk, eggs, corn, soy, several meds, many environmentals. Finally back on Xolair!
DD - mystery anaphylaxis, shellfish.
DH - banana/avocado, aspirin.  Asthma.
Me - peanut, tree nut, shellfish, banana/avocado/latex,  some meds.

Offline Ra3chel

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Re: Adult Onset Diagnosis... Kind of?
« Reply #3 on: June 11, 2012, 04:29:50 PM »
Yes, what Rachel said.  The false POSITIVE rate is about 50% for both tests.  However, the false NEGATIVE rate is only about 10%.  If you tested negative on both skin and RAST, chances are greater than 90% that you are indeed negative.

I do think your doctors may be on to something with the possibility of it being reflux/esophogeal (sp?) spam related - especially since the brownie and muffin are both similar in consistency.

 :yes:

In this case, the main reason to do an in-office challenge is that it'd be a safe way to get a definitive official answer. It sounds like the OP's not in a great place (and, honestly, who would be? It's the most useless, powerless-feeling thing to hear) with regards to the nebulous "well, PROBABLY not" diagnosis, and the first step would be a clear-cut yes or no.
The 3 is silent.

Offline Kimimila

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Re: Adult Onset Diagnosis... Kind of?
« Reply #4 on: August 12, 2012, 11:51:57 AM »
SILENT ACID REFLUX is a really big bugger (because those who suffer from it do not usually feel the burning).  Years ago I self diagnosed this ailment (after spending hours on the net) because I had a permanently swollen esophagus, it also felt as if I had food constantly stuck at the back of my throat, and I often woke up at night from a terrible (dry) cough.  I had not associated the latter with my problem(s), but this became clear after reading what other people had suffered as a result of Silent Acid Reflux.

It is almost always caused by certain foods or drinks (especially carbonated).  My problem was a small handful of almonds a day which I had been gobbling up for about a year (Because the delightful Dr. Oz on the O show had recommended them).  I gave them up instantly and two weeks later (after a few months of suffering) I was clear of the problem.

But recently I've been having similar symptoms and I broke my brain over what could be causing them as I never ate almonds again since 2007.  Lo and behold, a voice in my head told me, it's hazelnuts!!!
You usually hear about almonds and walnuts being the worst on the list of nuts, but clearly hazelnuts are not far off.  They were so nice in my yoghurt and muesli!  I've been eating them several times a week now for the last couple of months.  So as from today, no more.

No more nuts, at least not on a regular basis.  Like you, I am definitely not allergic but most definitely SENSITIVE, and perhaps a mere sensitivity to nuts does not show up on the tests?

So it seems that the best thing for you also is to just give up all nuts.  Unless doctors etc. are into alternative healing, they would never admit that it's a food that is causing your problem, because the solution is too easy (and too permanent, so you won't have to come back to them).  Remember that doctors and hospitals are businesses.  They don't love you.
Good luck with everything!