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Genetic Testing

birdie22

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birdie22 Enthusiast
birdie22
Posted

Should I ask for genetic testing?

I'm blood test negative (did ttg, total iga, and DGP). I've been gluten-free for a few months now (with a slip up here and there but very very few). I've posted here how I've felt like I'm on a wild goose chase because I still have symptoms (headache, canker sores, heartburn, muscle aches). I know that having the genes or not having the genes isn't 100% proof of having or not having celiac and that I could also be intolerant and not celiac. But I'm wondering if having the genetic test done would:

1. if positive, give a stronger indication that gluten is likely my issue and to keep on with the gluten-free and be much more diligent about CC

2. if negative, be more likely to rule out celiac and leave me to consider either non-celiac intolerance and start pursuing other causes

My other motivation is that I have two very young children and if I prove to have the genetic markers this would also lead me to be more aware of any potential issues in my girls.

So, would you push for the genetic testing? If so, can I request this through my PCP (I have never been referred to a GI or other specialist)?

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Metoo Enthusiast
Metoo
Posted

The genetic test won't help you prove anything though because they just give you an 'increased' chance and you can have celiac without the genes.

If you feel better I would continue on.

I am in a similar situation. I have negative blood work. My mother has both genetic markers for celiac (she was also tested but was negative). This means it's a high probability I an herited either 1 or both.

I know I am reacting much worse when I get glutened and 3+ weeks later I am still trying to heal from my last one. I know I am a gluten problem even though I am still having symptoms because it's from my last glutting.

I also have small children and so I am wrestling with not being diagnosed. At this point I am hoping to be biopsies for DH. I am also transitioning them to gluten-free. We are going to be a gluten free house. But without a diagnosis for them I Wont be able to control their school environment.

beebs Enthusiast
beebs
Posted

I got them done, even though my bloods were negative. It helps point me in the right direction a bit - even though they aren't the be all and end all iykwim.

Aly1 Contributor
Aly1
Posted

I could have written your post, I am in the exact same situation. Except hat currently I don't have medical insurance so I can't do anything right now anyway.

I think I will get tested - even though the results can't point to anything definitive, it's one more piece of the puzzle, and to me, the more pieces, the better.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

The genetic tests can cause more confusion. I had negative Celiac blood tests, but a very high positive Dx after having an endoscope.

Going gluten-free hasn't fixed all of my issues, and now I'm getting reactions from more foods that never bothered me before.

I had a rescope and the genetic blood test done to make sure we're on the right path. The rescope showed I still have a lot of damage and I was told the genetic test came back negative. I know they say DQ2 and DQ8 for Celiac, but have also read there are other genes that can point to it. I haven't talked to the Dr, yet about what the report from the gene tests said.

If there are other genes besides the DQ2 and 8, and your Dr. doesn't consider them, you will still have questions without answers.

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