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Genetic Testing?

shaleen

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shaleen Rookie
shaleen
Posted

Hi...I'm new here. I have an 18 month old who is diagnosed as failure to thrive. He will be going to a pediatric GI doc next week. My question...has anyone heard of genetic testing (which I read can be done either by blood or by a swab test)? It seems that may be MORE accurate then the endoscopy? Just wondering. And my son...is 18 months old, weighs in at 18 pounds..and seems to be allergic to just about everything!! Anyone in the same boat?

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Skylark Collaborator
Skylark
Posted

Genetic testing is not even remotely diagnostic. All it does is give some degree of risk. Even worse, doctors often "write off" people with so-called non celiac genes and then those people do not get proper care.

Little kids are very hard to diagnose, as they don't always have the antibodies, but the first things he should get are celiac bloodwork and an endoscopy.

Good luck!

MacieMay Explorer
MacieMay
Posted

My daughter is 18 mos today. She is not having issues with gaining weight but is having skin and loose stool issues. I just called her GI today about gene testing. She has had a negative celiac panel and a negative endoscopy and colonoscopy. Is your son having GI issues too?

shaleen Rookie
shaleen
Posted
  • Author

My daughter is 18 mos today. She is not having issues with gaining weight but is having skin and loose stool issues. I just called her GI today about gene testing. She has had a negative celiac panel and a negative endoscopy and colonoscopy. Is your son having GI issues too?

My son has skin issues as well...major, major skin rashes on his arms and legs...but since I've taken gluten, dairy, oranges and corn out of his diet the rashes have disappeared! His problem is that he just doesn't gain weight. And yes, stools are an issue with us as well...clay colored loose stools are an everyday thing for him. His blood work for the celiacs came back negative however he's been on a gluten free diet for months so I'm not sure if that played a part in it coming back negative. It's all a riddle to me...and extremely frustrating.

Skylark Collaborator
Skylark
Posted

His blood work for the celiacs came back negative however he's been on a gluten free diet for months so I'm not sure if that played a part in it coming back negative. It's all a riddle to me...and extremely frustrating.

You can't test for celiac in someone who is on the diet. Your doctor should have told you that. If he's been gluten-free for months and is still having issues, you need to be looking at things other than celiac.

MacieMay Explorer
MacieMay
Posted

My son has skin issues as well...major, major skin rashes on his arms and legs...but since I've taken gluten, dairy, oranges and corn out of his diet the rashes have disappeared! His problem is that he just doesn't gain weight. And yes, stools are an issue with us as well...clay colored loose stools are an everyday thing for him. His blood work for the celiacs came back negative however he's been on a gluten free diet for months so I'm not sure if that played a part in it coming back negative. It's all a riddle to me...and extremely frustrating.

The GI Dr. didn't call back today, hopefully tomorrow. If your son is off of dairy and gluten are you sure he is getting enough fat in his diet? It's hard (which we are finding out) to make sure they get enough of everything, when they are on diet restrictions. Do you remember....when your son went off dairy and gluten how long did it take for his rashes to go away?

shaleen Rookie
shaleen
Posted
  • Author

The GI Dr. didn't call back today, hopefully tomorrow. If your son is off of dairy and gluten are you sure he is getting enough fat in his diet? It's hard (which we are finding out) to make sure they get enough of everything, when they are on diet restrictions. Do you remember....when your son went off dairy and gluten how long did it take for his rashes to go away?

His rashes went away almost instantaneously....like within 2 days the rashes were TOTALLY gone. I'm very confused because my mother (who watches him 2 days a week) said he had diarrhea yesterday all day...and he hasn't had any gluten or dairy that I know of. And I know what you're saying about the diet/fat thing. I don't know if he's getting enough but the GI doc did put him on this drink (which the pharmacy had to order). It was a dairy free type of ensure...hopefully he'll drink it. Also, the allergy doc said that the blood test would still come back with antibodies in it even though he's been off gluten for a few months??? I'm so confused!!!!!! One doc tells me one thing and people tell me another...

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Skylark Collaborator
Skylark
Posted

An allergy blood test will still have antibodies when a person is gluten-free. A celiac test will not. They are different kinds of antibodies.

Are you getting him tested for other allergies? It might help.

shaleen Rookie
shaleen
Posted
  • Author

An allergy blood test will still have antibodies when a person is gluten-free. A celiac test will not. They are different kinds of antibodies.

Are you getting him tested for other allergies? It might help.

He was tested for all types of food allergies...all came back negative and it's completely clear he's allergic to stuff. Before I took him off of gluten/dairy/corn he had severe, severe rashes on his legs and arms...all disappeared as soon as I started the diet. He also had pretty bad loose stools...they are better...not completely but better. There still something wrong with him, I feel, as he's been on this gluten/dairy/corn free diet for weeks and hasn't gained an ounce. They are scheduling him for an endoscopy soon.

scarlett77 Apprentice
scarlett77
Posted

Rashes aren't always allergies so if he does have Celiac his allergy panel would likely be negative. My son was failure to thrive at about 20 months. He was diagnosed by positive celiac blood panel and positive endoscopy. If your son is off gluten then testing may not be accurate. Genetic testing from what I've read only show the gene trait but not if you actually have active Celiac Disease. If he was doing well on the gluten-free diet with the exception of growth, you may want to check his thyroid. Thyroid controls growth. In the blood panels we did it showed his thyroid to be low in addition to the Celiac so now he is on medication.

Good luck, I hope you get it figured out.

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    • trents
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