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Help Toddler Is Starting Testing For Celiac

2julsrick

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2julsrick Newbie
2julsrick
Posted

My 17th month old has been labeled failure to thrive she is only 15 lbs and 6 oz and does not walk or talk yet. The GI specialist is wanting to do a biopsy but it sounds so invasive can other parents tell me about the procedure and other testing that may be done first she had the stool fat test done and it was negative but she was very young at the time and was really just eating formula.

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Liddle4 Contributor
Liddle4
Posted
My 17th month old has been labeled failure to thrive she is only 15 lbs and 6 oz and does not walk or talk yet. The GI specialist is wanting to do a biopsy but it sounds so invasive can other parents tell me about the procedure and other testing that may be done first she had the stool fat test done and it was negative but she was very young at the time and was really just eating formula.

We went down the same road for 6 years before we were diagnosed with Celiac. Did they do a blood test. Have them do that first. I have seen studies that they may do away with biopsy as celiac disease damage is spotty. My child was Failure to Thrive for 6 years. He is 7 and weighs 37 lbs, we are 4 weeks into Gluten free and now egg, chicken, sweet potato, and rye free. Keep pushing I had to for 6 years and after about 12 doctors got a diagnoses. Hang in their it is very emotionally hard on the mom. Let me know if I can help

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

It seems really quick to jump to a biopsy. I know blood tests in young children are not always accurate but has she had them yet? Does she have any symptoms beside the failure to thrive? Is she eating plenty of gluten?

A noninvasive test is genetic testing. But, it doesn't diagnose. It will tell you if your daughter carries the genes for Celiac. If she doesn't then you can rule it out. You could try the stool test again. You do not need a doctor's order if you go through Enterolab.

My son had two biopsies last year when he was eight. He was nervous beforehand but the actual procedure was fairly quick and he woke right up afterwards. He had a sore throat the next day after both procedures but that is normal. The first one was for diagnosis and the second one was about 6 months later to see if the diet was working.

2julsrick Newbie
2julsrick
Posted
  • Author
We went down the same road for 6 years before we were diagnosed with Celiac. Did they do a blood test. Have them do that first. I have seen studies that they may do away with biopsy as celiac disease damage is spotty. My child was Failure to Thrive for 6 years. He is 7 and weighs 37 lbs, we are 4 weeks into Gluten free and now egg, chicken, sweet potato, and rye free. Keep pushing I had to for 6 years and after about 12 doctors got a diagnoses. Hang in their it is very emotionally hard on the mom. Let me know if I can help

No they seem to want to go right to the biopsy and have not even mentioned the blood test. Has your son had the biopsy and if so what did you think of the procedure I really do not want to go that route with my toddler. I will start to push for the blood test. Thank you so much for your support. If you can help with any advice I am trying to learn all that I can.

2julsrick Newbie
2julsrick
Posted
  • Author
It seems really quick to jump to a biopsy. I know blood tests in young children are not always accurate but has she had them yet? Does she have any symptoms beside the failure to thrive? Is she eating plenty of gluten?

A noninvasive test is genetic testing. But, it doesn't diagnose. It will tell you if your daughter carries the genes for Celiac. If she doesn't then you can rule it out. You could try the stool test again. You do not need a doctor's order if you go through Enterolab.

My son had two biopsies last year when he was eight. He was nervous beforehand but the actual procedure was fairly quick and he woke right up afterwards. He had a sore throat the next day after both procedures but that is normal. The first one was for diagnosis and the second one was about 6 months later to see if the diet was working.

She has not had the blood testing or the genetic testing yet I am going to push for this to be done first thank you so much for the information. She does not seem to have any other symptoms but has never slept well at night. She has a very small appetite and it is difficult to get her to eat much of anything. I seem to have more of the symptoms than she does and have made an appointment to see if I have it since I think this will help me to decide how much and how invasive I will go with the testing of my daughter.

g1gg1e Rookie
g1gg1e
Posted
No they seem to want to go right to the biopsy and have not even mentioned the blood test. Has your son had the biopsy and if so what did you think of the procedure I really do not want to go that route with my toddler. I will start to push for the blood test. Thank you so much for your support. If you can help with any advice I am trying to learn all that I can.

Make sure you ask for the FULL celiac panel to be run. Antibody and gene test.

Hope you figure out what it could be. Also there is a dairy induced auto immune disorder like celiac ( the name escapes me right now) you could look into milk and or soy if formula has been the main source of food lately.

Mom of a Celiac toddler Apprentice
Mom of a Celiac toddler
Posted

I am curious about this dairy induced auto immune disorder you mentioned. If you think of it please post about it.

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cadesmom Rookie
cadesmom
Posted
She has not had the blood testing or the genetic testing yet I am going to push for this to be done first thank you so much for the information. She does not seem to have any other symptoms but has never slept well at night. She has a very small appetite and it is difficult to get her to eat much of anything. I seem to have more of the symptoms than she does and have made an appointment to see if I have it since I think this will help me to decide how much and how invasive I will go with the testing of my daughter.

I WENT THROUGH THE BLOOD TESTING ALREADY FOR MY SON AND THE FIRST BLOOD TESTS WERE NEG BUT I HAVE LEARNED THAT MOST TIMES THEY ARE FOR CHILDREN THEN WE WENT TO GENE TESTING ,SIMPLE BLOOD TEST THE RESULTS TOOK ABOUT 2 WEEKS TO GET BACK AND I AM SOMEWHAT CONFUSED MYSELF DQ2 WAS NEG AND DQ8 POS MY SON IS 15 MONTHS AND YOU HAVE TO PUSH TESTING FOR THEM MY DOCS THOUGHT I JUST HAD A BAD SLEEPER AND BECAUSE HE HAD GREAT WEIGHT GAIN AND IS A BIG BABY NOTHING WAS WRONG,THE ONLT SYMPTOMS MY GUY HAS IS CONSTIPATION RASH AND HE CRIES WITH STOMACH PAINS AT NIGHT, I STARTED BEGGING FOR REFERALLS WHEN HE WAS ABOUT 5 MONTHS,HE IS MY 4TH SO I KNEW THE DIFFERANCE BETWEEN STOMACH PAINS AND WANTING MOMMY IN THE NIGHT LIKE HIS DOC THOUGHT,I WOULD REALLY LIKE ALSO TO KNOW ABOUT THE DAIRY IMMUNE DISORDER,MY SON IS A LITTLE BETTER SLEEPING SINCE HE HAS BEEN GLUTEN FREE BUT HE STILL HAS IS PAINFULL BELLY AT NIGHT SO TOMORROW WE ARE GOING TO AN ALLERGIST HOPEFULLY I WILL FIQURE THIS ALL OUT SOON,I AM NOT PURSUING THE BIOPSY FOR HIM .GOOD LUCK

Mama Ruthies Rookie
Mama Ruthies
Posted

Sorry you are having to deal with this.

You could get the blood test but as others have said, it has a higher false reading for young kids.

You could get the bioposy, but just so you know, adults intestinal tract when all laid out is as big as a tennis court. A child's would be smaller---my point is you could still miss a spot that shows problems.

This is what we did---we used the Enterolab stool test and cheek swab for gene testing. We didn't want to put our son through another blood draw (had had two bad ones at allergist) for a test we knew we couldn't fully depend on.

Our son came back with DQ8 and DQ7 (gluten sensitivity gene here but celiac gene in Europe). His numbers were also all elevated. It didn't matter one bit to us that some GI doctors don't accept Enterolab results---the gene testing can't be argued, and we have seen the changes going gluten free has had on him.

Our son has speech delays---wish we would have known about gluten's affects on the body much sooner. I used to grind my own wheat and add gluten---yikes!! Now when our son gets gluten by accident, he has BM issues, his speech regresses (which we hate to have happen), and the last time, he stopped feeding himself (he can feed himself with either left or right hand and never spills).

What I would do if I were you---try the diet. You will know if your daughter is gaining weight and will see any changes in speech/motor skills.

I feel for you---it stinks to see our kids have problems.

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