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Meekapaco1234

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Meekapaco1234 Newbie
Meekapaco1234
Posted

Hi all- I'm new here and have a question. Sorry about the long post but I wanted to give some background.

 I've been gluten free for several years. I started it when my son was eliminating wheat after a mild positive on an allergy test- I joined in avoiding it (and all gluten) so he wouldn't feel alone in missing out. After a few weeks I realized I had never felt better. Lifelong GI issues, eczema, red bumpy rashes, brain fog and severe fatigue (like the kind where all of a sudden I felt like I've been drugged and needed to lie down and sleep right now)  are all gone, thyroid dose needed to be cut by 1/3 (I have history of Hashimoto), asthma suddenly under much better control, migraines reduced from several a month to maybe once a year. My mom just had negative celiac antibody testing (they didn't test genetic markers) but is going to see a GI doc for anemia of unknown origin. My sister is about to get tested for celiac due to also having anemia of unknown origin as well as other celiac symptoms. Dad has Hashimoto and Lupus and had equivocal celiac antibody results a year ago but never followed up with it.

I recently talked to my allergy doc about testing for celiac so I would know for sure. He ran the celiac-plus panel from Prometheus. I am sure I had been cross contaminated for a week about 2 weeks prior to the test due to GI issues, headache and fatigue (I had been eating hummus that I bought from a restaurant that makes it from scratch- I called to ask if their hummus is gluten-free after having symptoms and was told that the ingredients are gluten-free but they don't advise celiacs to eat there due to flour being "everywhere" since they make their own pita bread in a very small kitchen.) I also attempted a 2 week gluten challenge prior to testing but only had 1/2 of a sweet roll and was too sick (abdominal pain, diarrhea, headaches, fatigue etc) to continue. I gave up after one day then had blood drawn a few days later. It has taken a couple weeks since eating it for my GI system to return to normal.

 

Here are the results:

 Positive for DQ2 heterozygous. 

Antibody results:

DGP IgG <0.4 (reference range <4.9)

DGP IgA 5.5 (reference range <6.1)

TTG IgA 0.5 (reference range <10.3

EMA negative (reference range: negative)

total IgA 282 (reference range 44-441)

 

My question is regarding the DGP IgA. It is technically in the negative range but I'm concerned about the fact that I have antibodies at all after being gluten-free for so long and only having had cross contamination for a week then eaten only 1/2 of a roll. What are your thoughts? My allergist doesn't discuss results over the phone and I don't have an appointment until later this week. Thanks!!

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kareng Grand Master
kareng
Posted

If you were gluten-free for so long, a couple of little bits of gluten might not be enough to elevated the antibodies that make it to the blood. Because of this, your negative Celiac testing means nothing.

also, from my understanding, negative is not 0 for a reason.  It may be that all people have a small amount of these antibodies naturally.  It may be that the test has limits on what's it can do and will record something for everyone.  

RMJ Mentor
RMJ
Posted
28 minutes ago, kareng said:

from my understanding, negative is not 0 for a reason.   It may be that the test has limits on what it can do and will record something for everyone.  

Kareng is correct.  I am a scientist and used to develop similar tests.  If you ran a sample of water you probably would not get a zero!

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