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Hla-Dq Testing


shorebird

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shorebird Apprentice

This may seem like a silly question, but I was wondering if I had genetic testing done for DQ2 and DQ8 if it would be affected by being gluten-free for 5 years? 


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kareng Grand Master

No. Your genes are always the same.

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GottaSki Mentor

Your genes come from your parents -- it is possible to have a pair of any gene if your parents happen to pass a copy of the same gene to you.

 

Gene testing can be done from birth - it cannot diagnose Celiac Disease on it's own -- yet can be an important part of the puzzle when diagnosis is difficult.

shorebird Apprentice

Ok, lol thanks that's what I figured. I felt stupid for asking but just wanted to make sure. #brainfart

mommida Enthusiast

No.  Don't feel bad at all.  Doctors should have explained testing, test results, and what it takes to diagnose.

GottaSki Mentor

Ok, lol thanks that's what I figured. I felt stupid for asking but just wanted to make sure. #brainfart

 

 

Mommida is spot on -- no dumb questions when it comes to understanding this process -- one day all our doctors will understand these tests as well as their patients :)

shorebird Apprentice

Thank you.  :) I don't feel as bad now asking. I've been trying to figure out what testing I should get done through Entero Labs since my symptoms are returning after years of being gluten-free. Anyone used them before? When I was dx'd with celiac disease, I only had an endoscopy/biopsies that showed patches of flattened villi in my small intestine. The GI doctor for whatever reason never did any blood tests or stool samples. I'm assuming he was right saying it's celiac disease because of the biopsy results and positive response to being gluten-free (up until now). But now that I'm getting sick again I got curious about the testing I could have done (HLA-DQ, IgA, other food sensitivities, etc.) I'm hoping it might clue me in.


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Takala Enthusiast

More likely you have either developed an additional intolerance to something like gluten-free oats (this got me about 8 years into my diet change, it took another year to figure it out, only because I was fortunate in that a local gluten-free health food store owner told me to think of that option, after I told her which products seemed to be setting me off).  Or soy.  Or you could be getting cross contaminated by some of the processed products you are using on yourself, on a pet, etc.  It could be medications, over the counter or prescription.... you really have to be a sleuth detective to figure this out, sometimes.

 

I had a terrific bout of breaking out in a rash this winter after cheerfully munching down 2 new, tasty items over the holidays, so, when I get a time frame when I feel like testing out which one it really is, that won't ruin my week, I will add one back in and see what happens.  Then, the other, but not together.  The odd part about that was that I didn't get the other reactions, so I'm not quite sure, but consistently my skin lets me know when I have screwed up, sometimes even before the neuro symptoms start.   

shorebird Apprentice

More likely you have either developed an additional intolerance to something like gluten-free oats (this got me about 8 years into my diet change, it took another year to figure it out, only because I was fortunate in that a local gluten-free health food store owner told me to think of that option, after I told her which products seemed to be setting me off).  Or soy.  Or you could be getting cross contaminated by some of the processed products you are using on yourself, on a pet, etc.  It could be medications, over the counter or prescription.... you really have to be a sleuth detective to figure this out, sometimes.

 

I had a terrific bout of breaking out in a rash this winter after cheerfully munching down 2 new, tasty items over the holidays, so, when I get a time frame when I feel like testing out which one it really is, that won't ruin my week, I will add one back in and see what happens.  Then, the other, but not together.  The odd part about that was that I didn't get the other reactions, so I'm not quite sure, but consistently my skin lets me know when I have screwed up, sometimes even before the neuro symptoms start.   

I've been thinking it might be the gluten-free oats since I started eating them for breakfast. It's been almost a week since I've had any but my symptoms haven't gone away yet. Yesterday I ate some corn tortilla chips (same ones I've always eaten) and I felt awful afterward. I had bad pain under my ribs in my back and stomach cramps. I'm thinking I could also be reacting to corn as well. The problem is I have no idea how long I need to eliminate these foods from my diet before my symptoms will disappear. When I went gluten-free it took a few months after 10+ years of being sick before feeling normal again. I'm hoping my food diary will help me figure things out.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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