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Why Did I Pay For A Gene Test?

JerryK

By JerryK
in Coping with Celiac Disease

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gf4life Enthusiast
gf4life
Posted

I found it very useful to know the genes we have. My daughter and I both have DQ2 and DQ7 (when I was first tested they were still calling it DQ3, subset 7, but have since started calling it DQ7 just like DQ8 is actually DQ3 subset 8, yet they call it DQ8...), andmy oldest boy has 2 copies of DQ7, my younger boy has DQ1 & DQ7. So by default my husband, who didn't get tested, has DQ1 & DQ7 as well.

My daughter and I are the only ones who have the Celiac gene DQ2 and we are also the only ones in our family who get the DH rash.

My boys still have serious issues with gluten no matter whether they have the Celiac genes or the gluten intolerance genes.

But we do know that my husband has the possibility of getting sick from gluten, and that is helpful.

Also we know that the kids have a high chance of passing at least a gluten intolerance gene to their kids, and that will help them in the future to be able to care for their kids better.

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JerryK Community Regular
JerryK
Posted
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To me the interesting part is which genes you have. DQ1 genes are associated with the brain issues, DQ2/8 the intestinal symptoms. It is just interesting but overall not all that valuable.

Hmm is this documented anywhere? Are there articles out there that discuss which genes are associated with which symptoms? Did this info come from Enterolab? Thanks, J

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    • cristiana
      Coeliac or not coeliac

      By cristiana · Posted

      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possibly way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Coeliac or not coeliac

      By CC90 · Posted

      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
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      By Wheatwacked · Posted

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    • trents
      Coeliac or not coeliac

      By trents · Posted

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      By cristiana · Posted

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