Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Genetic Testing?

shaleen

Recommended Posts

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,640
    • Most Online (within 30 mins)
      7,748
    GoodGlutenGrief
    Newest Member
    GoodGlutenGrief
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Popcorn pain

      By trents · Posted

      Welcome to the forum, @JenFur! You must be relatively new to the celiac journey. I wish it were as simple as just having to cut out gluten and all our gut issues magically disappear. It is very common for those with celiac disease to develop intolerance/sensitivity to other foods. Often it is because the protein structure of some other foods resembles that of gluten. Sometimes it is because damage the damage done to the gut lining by celiac disease wipes out cells that produce enzymes needed to break down those foods. Sometimes it is because the "leaky gut syndrome" associated with celiac disease causes the immune system to incorrectly identify other food proteins as threats or invaders. The two most common non-gluten foods that cause trouble for a lot of celiacs are dairy and oats. But soy, eggs and corn are also on that list. Sometimes these non-gluten food intolerances disappear with time and the healing of the villous lining of the small bowel.
    • JenFur
      Popcorn pain

      By JenFur · Posted

      I love popcorn but it doesn't love me.  Right now my gut hurts and I am bloated and passing gas.  Am I just super sensitive. I thought popcorn was gluten free 🤔 
    • trents
      Type 1 diabetes (4year old) and positieve ttg

      By trents · Posted

      Welcome to the forum, @marinke! "Type 1a diabetes (DM1) is associated with an increased risk of celiac disease (celiac disease) (1)." from: https://diabetesjournals.org/care/article/35/10/2083/38503/IgA-Anti-transglutaminase-Autoantibodies-at-Type-1 "The prevalence of celiac disease (celiac disease) in children with type 1 diabetes (T1D) is 5.1%, and it is often asymptomatic (1)." from: https://diabetesjournals.org/care/article/48/2/e13/157637/Diagnostic-Outcomes-of-Elevated-Transglutaminase So, this is 5x the rate found in the general population.
    • Mari
      Long term recovery

      By Mari · Posted

      Hi James47, You are less than 2 years into your recovery from Celiacs.  Tell us more about the problems you are having. Do you just want to get rid of belly fat or are you still having symptoms like gas and bloating.    For symptoms you may need to change your diet and take various supplements that you cannot adsorb from the foods you eat because of the damage caused by the autoimmune reaction in your small intestine. 
    • marinke
      Type 1 diabetes (4year old) and positieve ttg

      By marinke · Posted

      My daughter (4 years old) has type 1 diabetes since she was 1. Therefore, every year a screening is done. We live in the Netherlands. Every year the screening was fine. This year here ttg is positive, 14, >7 is positive. IGA was in range. Could the diabetes cause this positive result? Or the fact that she was sick the weeks before the brood test?
×
×
  • Create New...