Inconclusive celiac panel

[kkkjab]

Please help!  

I've always had some trouble with my stomach, bloating, gas, nauseous frequently, but nothing I didn't feel I could handle.    I had reflux surgery in February for a hiatal hernia and near constant heartburn.  Since about a month after surgery I have been miserable.   Constantly bloated to where it's painful, gas, nauseous nearly 24/7, alternate between diarrhea and constipation, mostly just diarrhea though.  Awful stomach cramps, noisy gurgly stomach all the time, stomach pain for hours after I eat, body aches, daily headaches, awful pain between my shoulders and I keep losing weight despite what I eat.  It's even taking a toll on my hair making it dry and brittle.  I also had my gall bladder removed 16 years ago (I was only 21 at the time) due to it basically just quitting on me.  It just stopped functioning.

I held off going to the dr thinking maybe it was side effect from surgery.   I finally went about a month ago and the first thing she did was run food allergy tests and a full celiac panel.  No food allergies but my celiac panel came back inconclusive.  I can't get into the gastroenterologist until the end of October. I did get a copy of the celiac blood panel but it doesn't say why it was inconclusive.

I tried going gluten free for a week, and felt about 60% better although it didn't alleviate all the symptoms.  Probably wasn't on it long enough.  Here are the results from the blood panel

IgA 127 mg/dl

Celiac DQ alpha 1  01:02,02:01

Celiac DQ beta 1  02:02,06:04

Celiac pairs present?   Equivocal

Tissue Transglutamanise Ab, IgA, S  <1.2U/ml

Dr was unhelpful when she gave me the results.  Anybody have any insight on this?

Thanks so much!

[cyclinglady]

19 minutes ago, kkkjab said:

Please help!  

I've always had some trouble with my stomach, bloating, gas, nauseous frequently, but nothing I didn't feel I could handle.    I had reflux surgery in February for a hiatal hernia and near constant heartburn.  Since about a month after surgery I have been miserable.   Constantly bloated to where it's painful, gas, nauseous nearly 24/7, alternate between diarrhea and constipation, mostly just diarrhea though.  Awful stomach cramps, noisy gurgly stomach all the time, stomach pain for hours after I eat, body aches, daily headaches, awful pain between my shoulders and I keep losing weight despite what I eat.  It's even taking a toll on my hair making it dry and brittle.  I also had my gall bladder removed 16 years ago (I was only 21 at the time) due to it basically just quitting on me.  It just stopped functioning.

I held off going to the dr thinking maybe it was side effect from surgery.   I finally went about a month ago and the first thing she did was run food allergy tests and a full celiac panel.  No food allergies but my celiac panel came back inconclusive.  I can't get into the gastroenterologist until the end of October. I did get a copy of the celiac blood panel but it doesn't say why it was inconclusive.

I tried going gluten free for a week, and felt about 60% better although it didn't alleviate all the symptoms.  Probably wasn't on it long enough.  Here are the results from the blood panel

IgA 127 mg/dl

Celiac DQ alpha 1  01:02,02:01

Celiac DQ beta 1  02:02,06:04

Celiac pairs present?   Equivocal

Tissue Transglutamanise Ab, IgA, S  <1.2U/ml

Dr was unhelpful when she gave me the results.  Anybody have any insight on this?

Thanks so much!

Is that TTG IgA result a 5?  It looks like you typed the letter "S" to me.  

[kkkjab]

It is an S.    That's what the result page showed.  I have no idea how to read the results or what they mean.

[frieze]

were is the rest of the testing????

[kkkjab]

This is all the Dr office gave me.  What else should I be looking for?  I can call the dr and see if there was more.

[cyclinglady]

Here are the tests (see below link).   Based on what you posted, I do not think a full celiac panel was ordered.  Note that you should have been on a gluten diet (yes, gluten-containing diet) in order for ANY of the celiac tests to be accurate.  Had you been gluten free when you had the blood drawn?  If so, for how long?  Researchers indicate that for the celiac blood tests, patients need to be consuming gluten for 8 to 12 weeks prior to the blood draw.  

Open Original Shared Link

I can't speak for the gene testing as I never was tested so I haven't researched it enough to comment.  I can tell you that it is not used for diagnosing patients.  It is used to rule out celiac disease.  Why?  That's because about 30% of the population carries the genes that could turn into celiac disease, but only 1% of those actually go on to develop celiac disease.  Because the gene test was ordered as part of a screening, I would be concerned that your doctor doesn't have enough knowledge about celiac disease.  Consider a second opinion.  And that letter "S", maybe it's a typo.  Only your doctor can tell you!