help-old test results

[MandyP]

Hi!

I'm new here, and am learning what everything means.  I just realized my old test results from 2012 were available in my online chart.  My symptoms have increased since then, and I am requesting a retest tomorrow.  I have awful skin rash/itching that only goes away with steroids OR eating gluten free.  I also have migraines that seems related to gluten.  All the GI issues--yep, when eating gluten.

Here's what it said in 2012:

Gliadin igA 5.0

Gliadin igG 5.2

TTg <1.2 U/ml

TTG IgG < 1.2 U/ml

I feel like I need something that says clearly I can't eat gluten.  Otherwise, I can't but help to see it as a 'choice' even though I am SO incredibly ill when I do eat it.

Any help is greatly appreciated!

[ravenwoodglass]

I hope your not eating gluten free at this point. You need to be eating gluten for any celiac testing. If you are gluten free you need to be eating at least a couple slices of bread worth of gluten for a couple months before you have testing done.

You also may have DH but if you have recently been on prednisone for the rash you will need to wait for testing by a Derm. If you do go for testing for DH try to find a doctor who is knowledgeable about how to do the biopsy properly. They need to do the biopsy next to active lesions.

I hope you can get some clear answers soon.

[cyclinglady]

1.  Need the lab ranges as they vary from lab to lab.

2. Make sure you have been eating gluten daily for 8 to 12 weeks prior to a blood draw (celiac test) or tests will be invalid.  

3.   Read up on DH for advice and skin biopsy information.  

 

[MandyP]

Yes I've been eating gluten for the last couple of months and I have been miserable.  Me asking for a retest tomorrow is hopefully one way I can convince myself that I just have to be gluten free and that it is no longer a choice.

I did have a skin biopsy--years ago when the rash first started.  He was a regular dermatologist.  I can't remember the specifics, but in the end it was a 'uticaria' of an unknown origin.  5 doctors and several years of misery later I went to a more 'wholistic' doctor.  The first question she asked me was if I had every tried out a month of not eating wheat.  I had not--and when I did, it was the first time that the rash went away without steroids.

Right now I am eating gluten.  And I am sooo sick.  I just can't imagine how this is not celiac.  How can I be THIS ill and it just be a 'sensitivity?'

[MandyP]

All of these results just say U/ml, and only the Tissue Transglutaminase IgG gives a range: < 6.0 (Negative) U/ml

So my results were negative.  But I'm so sick!  And my symptoms have increased since 2012.

[cyclinglady]

Celiac disease can develop at any time in your life.  So, it would be good to get re-tested.  Some celiacs do not get a positive on the blood tests, especially those with DH.  You should rule out other GI issues too.  

A gluten sensitivity can cause all your symptoms, but you just do not have intestinal damage.