Test Results Are In...

[pikkulintu]

So I had an appointment with my doc today who found that my celiac blood test was negative so she has ruled out celiac. I found though after going through the results at home that they had only tested for two markers. She has no explanation for why my rash seems to be getting worse (my derm appointment is on Monday) and told me I was a mystery that she had no answers for. Great.

 

I was concerned as I've had an apparent reaction to eating bread and pasta the last 4 days. It starts within minutes of consuming the food. I start to get a tingling sensation on my upper lip/underneath the nose area, which then turns into an intense burning sensation. It was the worst after eating pasta. My top lip then swelled to twice the size of the my botton lip which lasted for a few hours before going down slightly. It's still not 100% back to normal. The doc completely dismissed me. She kept telling me she had no idea why I would be experiencing this and kept telling me, 'Wait until you see the dermatologist.'

 

I'm still convinced that my rash is DH and in keeping with the 4 slices of bread a day minimum before my derm app I'm finding that my symptoms are getting worse - particularly with this new reaction I seem to be experiencing I'm worried things are accelerating.

 

Goodness, time to find me a new doctor I think. On the bright side though my lip looks like it's had a bit of collagen pumped in there so that's a plus I suppose.

Hoping for some decent answers from the derm although I won't be holding my breath.

[kareng]

Were you gluten free when you had your blood tested?

[nvsmom]

Those with dh tend to have more false negative blood tests, so you could be correct that it is celiac disease.

 

Perhaps it is a wheat allergy?  The tingling and swelling sounds a bit like an allergy.

[beth01]

I had lip swelling like that, but it was years ( probably 15+) before my diagnosis.  Bothered me for about half a year where my lip would swell for no reason and then back to normal again.  Hasn't happened since.  Never did figure out what was causing it.

[pikkulintu]

Yep have definitely been on gluten (and feeling the consequences!). Am aching to go gluten free but have to wait until all testing is done :S Yes, I also thought it was some sort of wheat allergic reaction so was surprised when my doc dismissed it.

 

Had a look through my blood test results and saw they tested me for

AGA IgG

T-glutaminase

Both of which were negative.

 

My levels for iron/vitamin d were all ok, if on the low side, but I have been taking some super-strength vitamin d tablets and a multivitamin the last few months so maybe this is why? My vitamin d and iron have always been quite low hence the supplements.

 

I've since seen (via these forums) that the AGA IgG is one of the older type tests and more unreliable. Is this correct? Argh so much to wrap my head around and am so tired of feeling itchy and crummy (no pun intended).

 

Thanks guys for your responses!

[nvsmom]

Yes, the anit-gliadin antoibodies (AGA) tests are the older tests.  Their sensitivity is not as good as the newer DGP tests but they do still catch some celiacs.  As you can see from this report (page 12), the sensitivities of the AGA tests are around 17-100% and <70-91%.  The sensitivity of the DGP tests (deaminated gliadin peptides) is a fair bit better.

 

I don't know a lot about allergy testing but those tests are not 100% sensitive either.  Perhaps google your symptoms and see if it fits.

 

I hope you figure it out.