Buccal Swab Results: Any Other Double Dq1S Out There? Thoughts?

[lisalgreer]

Hi, all!

 

I finally bit the bullet and did the Enterolab buccal swab. Here are my results:

 

HLA-DQB1 Molecular analysis, Allele 1      0501   

HLA-DQB1 Molecular analysis, Allele 2      0602   

Serologic equivalent: HLA-DQ   1,1  (Subtype 5,6)

 

So, I have two copies of DQ 1. That supposedly can make immunologic responses stronger and can lead to gluten ataxia. Anyone have experience with this? I am pretty sure I have a response to gluten, and my bloodwork looked better off of it. Any other double DQ1s out there? What are your gluten responses? I have struggled with total fatigue, repeated UTIs and kidney problems, depression, huge weight gain, etc.

 

I would love some feedback/opinions. I am thinking this means enough for me to avoid gluten totally?

[kareng]

So you were negative for the celiac genes? DQ2 and 8?

Have you had any celiac blood tests? Endoscopy?

[lisalgreer]

So you were negative for the celiac genes? DQ2 and 8?

Have you had any celiac blood tests? Endoscopy?

Negative for DQ2 and DQ8. Celiac blood tests have all been negative. Haven't gotten an endoscopy yet, but I am going to try to over the next month or so. At this point, not sure I need one. The results and the journal articles I'm reading about Double DQ1 and my family history convince me to stay away from it for good.

[kareng]

if gluten bothers you, then you should certainly not eat it, even though it appears you do not have celiac disease. You could be sensitive to gluten for other reasons.

[BlessedMommy]

^That, exactly.

 

The media has somehow painted a picture that everything is black and white, either you have celiac or gluten free is a fad diet and you can go eat pizza and bagels without fear. Don't be afraid to go gluten-free, even if you don't have celiac!

 

You mentioned gluten ataxia. Have you had a history of neurological issues with gluten or are you worried that you may develop them in the future?

 

I'm strictly gluten free despite lack of diagnosis, due to neurological complications from gluten. The risk of having a stroke is concerning enough to me, that I'm quite strict in my gluten-free diet.

[lisalgreer]

Well, I have a sibling with MS, diagnosed before age 30, and I have had some strange speech stuff, lack of balance, etc. Also, I have suffered with depression, OCD, anxiety on and off for years. I also have a lot of other symptoms like malabsorption. And I have one autistic daughter and now a son being tested for neuromuscular issues. Both of my kids have DQ1, obviously, soooo.

 

Yeah, I think it's all related, and I'm better off of gluten. I have the baby off of it too for now.

[BlessedMommy]

I've found that my anxiety and OCD symptoms have improved greatly on a strict gluten free diet. (avoiding sources of cross contamination) I hope that it works for you as well!