Non-IgE suspected Anaphylaxis?

[louisabone]

I had Migraines since my Teens and last year I linked stomach distention with when I ate 2 peices of bread in a week, I considered cutting out gluten and then when I was diagnosed with Fibromyalgia I was adviced that gluten free diets could help so I took the plunge...

It resulted in my stomach to stop swelling and migraines were gone which was fab...

I then decided to try a sausage roll, I'm a sucker for pastry.

Within 30 minutes my throat began to slowly swell, I had a migraine, I felt dizzy and then then very feint and I had this impending feeling of doom, 'I just kept saying this is bad, this is really bad I dont know what to do this is so bad' I went and grabbed my daughters bottle of antihisthamine and drank alot of it (I know shouldn't of but I was sooo scared)
at about 30minutesish (cant say for sure wasnt clock watching I was laid as i felt very weak ) the slow swelling of my throat had stopped (It got to the point it was uncomfortable to swallow but not impaired breathing) by about an hour the throat had stopped swelling I felt less weak I wasnt dizzy etc
I did still have the migraine

Next day I had like a hangover feeling and my stomach was severely distended

When I saw my Dr I explained what had happened and she said it could of been anaphylaxis but they cant know for sure as i didnt go to hospital during (I don't like to bother health care proffesionals if it had of caused breathing difficulty or not responded to antihsithamine but since i managed at home i didnt see a need) when i asked for allergy testing she only booked me for RAST after i kinda begged (as if im gluten free there is no need to do it anyway)

Surprisingly the RAST came back as negitive

I'm a bit unsure what to do for the best now, I'm petrified of wheat now, that night was the second most terrifying thing to ever happen in my life (first being my middle daughter having a ferbral convulsion) but with two of my daughters and my husband all eating wheat i have to touch and make things with it, but stress level is unbelievable

I have toyed with the thought of trying myself with wheat again just a little bits to see what happens to try and not be as frightened because since RAST was negitive it cant be anaphylaxis can it?

I cant get alot of help from my surgury because I am still gluten free (even contamination of Gluten causes instant migraine and stomach distention within an hour) they just say what does it matter
but I made cupcakes for my daughters teacher and had a panic attach touching the wheat flour

To clarify which I think I probabaly need to as I babble esp since thinking of this makes me feel scared...

is it possible to even have anaphylaxis with a negative RAST?

Would you reccomend or not a food challange at home if just to save me from panic?

[Dr Joanna Lukawska]

Dear Louisa
The symptoms of throat swelling up, feeling faint, dizzy and impression of impending doom are all symptoms of anaphylaxis and you are right to take them seriously. You were also right to treat yourself with antihistamines, which are generally very safe.
Your GP did a RAST blood test, I am guessing here, to wheat, which was negative. Generally skin testing is more reliable than RAST testing, however in case of wheat there are many false positive and false negative in both categories.
As your reaction may have been to any constituent ingredients of the sausage roll (or indeed anything else you ate or drank at the time, including any medications) you need to be tested with the food, drink etc you consumed in the 2 hours before the event. You should not challenge yourself at home, this could be very dangerous. It would be best if you could bring the exact food etc with you to the clinic. You will then be tested (skin prick testing) during your appointment. We would only challenge you in hospital, under strict medical supervision and only if the test results were inconclusive.
Please ask your GP for a referral to your nearest Allergy Clinic (you can find the list of clinics on BSACI website). Unless proper diagnosis is made you can not be sure what to avoid. It is possible your reaction was to wheat, omega 5 gliadin (a constituent of wheat) or to any other ingredient of the sausage roll. If you check the list of ingredients on the packaging you will see that these products can contain a lot of unexpected things such as soya, lupin flower etc. (again bring the packaging to the clinic with you)
You also need adrenalin autoinjector (epipen, jext, anapen) and you need to learn how to use it. Your family doctor will be able to do this for you.
In summary you need a referral to your local Allergy Clinic where a diagnosis can be made and treatment planned.
Finally it is possible that your anaphylaxis was non Ig E mediated, however Idiopathic Anaphylaxis is a diagnosis of exclusion after all the other possibilities have been conclusively ruled out.
Good luck, Joanna