My husband was diagnosed with Celiacs Disease in February. My 6 year old daughter has no symptoms, however, I asked her pediatrician to test just to put my mind at ease. Unfortunately her results came back positive, they were:
Tissue Transglutamin IgA - 121 (>20 is positive)
Deam Gliadin Pep Abs - 31 (>20 is positive)
She has an appointment with the ped. GI next month. My question is - based on your experience will the doctor pressure me to do a biopsy?
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7 replies to this topic
#2
nvsmom
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Posted 25 September 2012 - 06:07 PM
It really depends on the doctor...I was never biopsied either. Her numbers are quite high, and we know it is genetically linked so with her dad having it, I on't see a need. She has celiac. ((Hugs)) to you mom. That's great you had her checked, you have probably saved her many complications and health problems that could have arisen had she continued as an untreated celiac. Yay Mom!
Best wishes.
Best wishes.
Nicole 
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hashimoto's - August, 2012
CANADIAN
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hashimoto's - August, 2012
CANADIAN
#3
tom
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Posted 25 September 2012 - 06:37 PM
Not sure I understand the 'pressure me' part. It's a pretty easy procedure that 6 yr olds can handle just fine....
She has an appointment with the ped. GI next month. My question is - based on your experience will the doctor pressure me to do a biopsy?
Are you thinking of a downside that I'm missing?
>>>>>>> tom <<<<<<<
Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.
Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07
Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.
Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07
#4
shadowicewolf
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Posted 25 September 2012 - 07:35 PM
Because generally they have to knock a patient out when they do that test.
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#5
ravenwoodglass
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Posted 26 September 2012 - 03:05 AM
The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test is done and make sure that the GI is celiac savvy and will take enough biopsies. Damage can be patchy especially in children.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#6
NoName33
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Posted 26 September 2012 - 06:06 AM
Not sure I understand the 'pressure me' part. It's a pretty easy procedure that 6 yr olds can handle just fine.
Are you thinking of a downside that I'm missing?
Sorry, I should have explained better. *I* think it is unnecessary based on the fact that her Dad has it and her blood test results. Also, she is a very high anxiety kid and will probably not handle it well.
#7
NoName33
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Posted 26 September 2012 - 06:18 AM
The choice to biopsy or not is really up to you. If your ped will give her the diagnosis she will need for schools to take her need to be gluten free seriously then if you are reluctant to endo her you could choose to forgo it. Talk to your ped about your concerns. If you are going to choose to do the endo do be sure to keep her on gluten until that test is done and make sure that the GI is celiac savvy and will take enough biopsies. Damage can be patchy especially in children.
I am very lucky in regards to her school - it is a small private school and they are familiar with the disease already based on my conversation with her teacher (there are staff members with it). They do not have a lunch program, you have to supply a lunch every day. And the tables are cleaned every day right before they eat lunch. They do not allow treats to celebrate birthdays either.
#8
frieze
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Posted 26 September 2012 - 10:39 AM
there is always college to look forward to, even a public HS, or bigger private school.I am very lucky in regards to her school - it is a small private school and they are familiar with the disease already based on my conversation with her teacher (there are staff members with it). They do not have a lunch program, you have to supply a lunch every day. And the tables are cleaned every day right before they eat lunch. They do not allow treats to celebrate birthdays either.
There may be issues of accomadation.
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