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JDT Hoosier

Celiac HLA test

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I've had a long/confused history with eating gluten-free.   To make a long story short - about 4 years ago I was stricken with GI issues.    All kinds of tests were performed, not one coming back positive; ostensibly, they did test for celiac but I doubt the tests they performed were adequate.     Eventually they sent me to a dietitian who put me on a gluten-free/dairy free diet.     That did not seem to make a huge difference at all, in fact, they found something else that when addressed, restored my GI health - but that was still 2 years later.    During those 2 years, and up to now, I have been continuing a gluten-free diet.    As I felt better, I cheated here and there, and did not seem to see any issues or symptoms.     Eventually, I went ahead and did the HLA test as more of an academic exercise - if I did not have the genes, I would say goodbye to the gluten-free diet.    However, turns out that I do have a genetic basis.     

I noted the references for the test (from Labcorp) are from 2009 or earlier, and wondered if interpretations have changed since then.

DQA1*03:BC,05:01 
DQB1*02:AJGCJ,03:AJDZR 

THE PATIENT IS POSITIVE FOR DQ2. CELIAC DISEASE RISK FROM THE HLA DQA/DQB GENOTYPE IS APPROXIMATELY 1:35 (2.9%) 

I'm not entirely sure how to read this.  I cannot match this up to the Wikipedia article.    I've tried researching - but hesitate to jump to any conclusions other than in general, I have DQ2, but that may be too simplistic an explanation.  

Appreciate any comments from those far more knowledgeable.      

Thanks!
 

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OK - I missed posting a section of the report:

DQ2 (DQA1 0501/0505,DQB1 02XX) POSITIVE
DQ8 (DQA1 03XX, DQB1 0302) NEGATIVE

Then 

FINAL RESULTS:
DQA1*03:BC,05:01
DQB1*02:AJGCJ,03:AJDZR

I'm reading all the previous emails plus articles posted on this site pertinent to the genetic test, but it's still a challenge, as I'm not clear on the alpha and beta units as per above; they seem to contradict.    

 

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You only need one celiac gene to get celiac. Celiac is not a disorder where you have to have 2 copies of a gene to develop. That said you didn't get any relief from the diet and 2 years later something else was discovered and treatment of that resolved unresolved issues.  You might want to consider going back on gluten for 2 or 3 months and then getting antibody testing and an endoscopy. If you have no reaction to the challenge and your antibody levels come back negative then you are likely not celiac at this time. If however you do react to the challenge, and reactions don't have to be GI related as celiac can cause everything from skin issues to neuro issues and much more, then you may want to go back to the diet even if your antibodies are not elevated.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks for the reply Raven.      

I was aware I needed to back to eating gluten for a few months to conduct further testing but after nearly 4 years of gluten-free, I'm actually a little bit apprehensive of doing so.    It's been that "not knowing" all this time that was on the edge of my mind, but at the same time - eating gluten-free says you are taking the risk off the plate, "just in case".    A little bit of a quandary.  

Now that I finally know something for sure, what I was hoping was to determine from the test whether I had the DQ2.5 variation but I'm sure I do.

 

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