Confused About Celiac Test Results, Help?

[JM075]

I was recently tested for Celiac Disease because of symptoms I've been experiencing for years. My primary doctor ran the first test a few months ago after I had been gluten free for about 6 months or so (I resumed eating gluten for about 4 weeks, then had my blood drawn.) The test was negative. Primary doc diagnosed me with Non Celiac Gluten Sensitivity because of the negative test (and because I told her how much better I had felt when I was off of gluten), and referred me to a gastroenterologist to follow up because of my symptoms. I continued eating gluten until I saw the gastro in case he wanted to run other tests, so I was back on gluten for roughly 15-16 weeks before he ran a comprehensive celiac panel. The results were:

No evidence of celiac disease by serology but Celiac risk alleles are present.

HLA-DQA1 Genotype value 01, 03

HLA-DQB1 Genotype value 06, 03:02

Celiac Risk Haplotype value Positive

IgA value 204 (range 78-391)

Transglutaminase Ab, IgA value 3 (range <20)

Celiac Category value 2 (DQ8 and other low risk allele - Moderate)

I don't see him again until June, so I messaged and asked what the results meant and he told me that I have some Celiac genes and that I may or may not get it but I don't have it now.

My question is, should my family be tested also? My mom (father is deceased), grandmother, aunt, and my children? Are the genes common in the general population? I don't want to make a big deal out of it if it's nothing to worry about, but I also don't want to ignore it completely if there's a risk my family might have undiagnosed celiac disease.

He's having me do other tests also (lactose, fructose, and glucose breath tests, EGD, manometry, and colonoscopy), but I think celiac disease's been ruled out. Is there anything else I should ask for or does that pretty much cover it? At my appointment, he had mentioned that my symptoms could be caused by the glucose (or was it fructose?) in the foods and not the gluten. Hm...

Anyway, thanks so much in advance. I look forward to hearing your input!

 

[ironictruth]

Was any other test listed in the panel? EMA OR DGP? 

[JM075]

No, those were all of them.

[JM075]

7 minutes ago, ironictruth said:

Was any other test listed in the panel? EMA OR DGP? 

Sorry. I just figured out how to quote lol. No, those were all of them.

[stacieb]

I tested negative for celiac, doc told me I have gulten enterropathy

[cyclinglady]

I would ask for the complete celiac panel.  While the TTG is a good screening test, it does not catch all celiacs like me! ?  Ask for the EMA and the DGP tests before you completely rule out celiac disease.  Also note that some celiacs test negative to the blood tests.  

[JM075]

29 minutes ago, stacieb said:

I tested negative for celiac, doc told me I have gulten enterropathy

I had to google that as I'm not familiar with the terms. That's just another name for Celiac Disease, right?

[JM075]

26 minutes ago, cyclinglady said:

I would ask for the complete celiac panel.  While the TTG is a good screening test, it does not catch all celiacs like me! ?  Ask for the EMA and the DGP tests before you completely rule out celiac disease.  Also note that some celiacs test negative to the blood tests.  

Oh, I just assumed what I had done was the complete panel. I'll definitely ask for those two tests, thanks so much. Pretty disheartening to hear that even with negative blood results people may still be walking around with it feeling terrible. Glad yours was caught 

[cyclinglady]

About the celiac genes.  It is not used for diagnosing celiac disease.  It can help to rule it out though.  About 30% or more of the population carries the genes that can develop into celiac disease, but only 1% actually do in their lifetime.  So, it is not necessary to have family members tested unless you have a celiac diagnosis or you strongly suspect someone in your family as having celiac disease.  For example, first degree relatives should be tested for celiac disease, but my niece's GI ordered a celiac panel for her because 1) she was having intestinal issues and 2) she had a relative (me ?) Who has celiac disease even though the connection was not first-degree.  (No she does not have celiac disease but Crohn's which is another autoimmune disorder ☹️

 

[JM075]

Well, the Dr answered my request for the EMA and DGP tests by quoting his previous message (stating that my results mean that I have some Celiac genes and that I am at risk of developing it but it doesn't mean that I have it or that I will develop it) and that if I needed to discuss it more I would have to make a follow-up appointment.

*shrugs*

[JM075]

19 hours ago, cyclinglady said:

About the celiac genes.  It is not used for diagnosing celiac disease.  It can help to rule it out though.  About 30% or more of the population carries the genes that can develop into celiac disease, but only 1% actually do in their lifetime.  So, it is not necessary to have family members tested unless you have a celiac diagnosis or you strongly suspect someone in your family as having celiac disease.  For example, first degree relatives should be tested for celiac disease, but my niece's GI ordered a celiac panel for her because 1) she was having intestinal issues and 2) she had a relative (me ?) Who has celiac disease even though the connection was not first-degree.  (No she does not have celiac disease but Crohn's which is another autoimmune disorder ☹️

 

Thank you for sharing your knowledge. I do suspect my son and my mother - they both have tummy issues but I can't convince my mom to see a dr for her sudden and tremendous weight loss let alone this. My son doesn't have health insurance at the moment but as soon as he gets it, he's willing to go. I'm sorry about your niece's Crohn's diagnosis. My other son's drs thought he had that but thankfully he didn't. He also suffers from chronic constipation and has had so many tests and none of his drs can figure out why.