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Hollye

13 month old the size of an average 7 month old and has Failure to thrive

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Hi, I am hoping to get some insight.  I have a 13 month old daughter who has just been diagnosed with failure to thrive.  She was born late and weighed 3.1 kilos. Quite normal. Up until about 7 months she was positing quite often (more then just spit up) and coughing incessantly . I brought her to the drs quite a few times because I was so worried about this dry cough.( 9 months they thought possibly Cystic Fibrosis but luckily thats been ruled out). Her poos were also quite explosive and slimy but I chalked this up to exclusively breastfeeding and her shots.  Other than that she was a very content baby. She still is content and happy and meeting her milestones, except for her weight and height.  She is the size of an average 7 month old. I exclusively breastfed her until about 7 months until when she managed to pick up a croissant dropped by another child and began teething on it.  I decided to give her croissants thereafter along with the normal first baby foods.  From that point on, she's stopped growing but that was unnoticed until about 9 months.  Anyway, since I'm not gluten sensitive I kept eating gluten and breastfeeding her but I did take her off of gluten.  I noticed that her poos thickened a bit sometimes but all the food that she did ingest comes out EXACTLY the way it looked going in.  Even in color.  I decided to mash half of her food and keep half cut up because she preferred the finger foods and even the mash came out the same color!  From 9 months to 12 months I did strictly gluten-free for her and most of the time for myself but she never put on weight!  She then was given a handful of cheerios by mistake and 20 minutes after she had a full body rash that lasted a week!  (we cannot confirm if its from the wheat because she had tofu (soy) for the first time the night before.  She then had the blood test but all came back negative though she was tested for gluten without having gluten....Finally we are currently seeing a paediatric GI specialist and he's asked me and her to stop eating Dairy and Gluten for 6 weeks. He suspects she might be celiac.  MY QUESTION: Can my small amounts of eating gluten (4 small random servings a week)  create failure to thrive in a celiac baby?  As a side note, when I was pregnant with her I could not stomach gluten foods (bread, crackers, pasta, etc - any relation?)  Thank you!!

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My youngest was always at the 5% or below until she was finally diagnosed celiac at 9 years.  When she went gluten-free she grew 4 inches, next year 4 inches, next year 4 inches.  I nursed her until she was two (she had solid food as well of course) ....she was so small....I remember people seeing her in the grocery cart and hearing her talk, saying "OMG listen to that tiny baby talk!"  She was hitting milestones properly except for growth, so the doc never worried too much.  

I do remember my babies were sensitive to my diet as it pertained to breastmilk, but none of us were diagnosed celiac at that time.  So I my experience didn't question that part of my diet.  I might suggest you pose this question on the babies and children's issues board.

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I WOULD RECOMMEND WHILE YOU AND HER ARE BOTH ON GLUTEN...YOU MUST BE ON GLUTEN FOR SIX MONTHS BOTH OF YOU GET THESE BLOOD TESTS

CODES: 519.0 FOR QUEST HLAT TYPING FOR CELIAC DISEASE
TISSUE TRANSGLUTAMINASE ANTIBODIES (IgA, IgG)
GLIADIN ANTIBODY PROFILE (IgA, IgG)
HLA TYPING FOR CELIAC DISEASE (HLA-DQ2, HLA-DQ8,HLA-DQA1,HLA-DQB1                                            (Celiac Genetic Test)
DX: 579.0

 

ALSO GO TO THIS WEBSITE AND LEARN MORE...GET THE GENETIC TEST TO SEE IF IN YOURS AND HER GENES..

http://www.cureceliacdisease.org/

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I WOULD RECOMMEND WHILE YOU AND HER ARE BOTH ON GLUTEN...YOU MUST BE ON GLUTEN FOR SIX MONTHS BOTH OF YOU GET THESE BLOOD TESTS

CODES: 519.0 FOR QUEST HLAT TYPING FOR CELIAC DISEASE
TISSUE TRANSGLUTAMINASE ANTIBODIES (IgA, IgG)
GLIADIN ANTIBODY PROFILE (IgA, IgG)
HLA TYPING FOR CELIAC DISEASE (HLA-DQ2, HLA-DQ8,HLA-DQA1,HLA-DQB1                                            (Celiac Genetic Test)
DX: 579.0

 

ALSO GO TO THIS WEBSITE AND LEARN MORE...GET THE GENETIC TEST TO SEE IF IN YOURS AND HER GENES..

http://www.cureceliacdisease.org/

 

Excellent advice about the referral to the University of Chicago's celiac website!  Usually the genetic test for celiac disease is given after the DGP and TTG tests as a means of ruling out celiac disease.  About 30% of the population carry the genes for celiac disease but few go on to actually develop it.  Besides the TTG and DGP tests, patients should be given an IGA deficency test to validate the TTG iga and DGP IGa tests.   

 

Based on most leading researchers (including the University of Chicago), Most doctors recommend 8 to 12 weeks of consuming gluten daily prior to a celiac blood panel.  In the case of a failure to thrive in a baby, I would work with my doctor to insure the health of my child and deal with a diagnosis later even if that mean going gluten free as a test.  I would encourage the original poster to read our coping section and learn about hidden sources of gluten and cross contamination.  Both mom and baby can test for celiac later once baby has gained weight and is no longer in danger.  

 


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Hashimoto's Thyroiditis -- Stable 2014

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Celiac.com - Celiac Disease Board Moderator

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Thank you both so much for replying. In my panic and guilt after being told my child has ftt due to most likely celiac, I didn't realise there was a baby section. It is reassuring to know she has a chance of catching up in growth and I can totally relate to the tiny 'genius' baby talking and walking!!! When I tell people her real age they just gasp. They are more surprised of her age then seeing a supposed 6 month old walk and say hi!

I've noticed that since going totally gluten free for 1.5 weeks, she has put on 100 grams! Additionally her appetite has increased and she's no longer pooing yellow mush. This is monumental for us so yes, I'm not keen at all to give her an 8 week gluten diet for the test. We live in Melbourne Australia but our paediatric specialist doctor was trained at Columbia and worked in Manhattan for 15 years so hopefully he's as cluey as the docs in America. I will check out the Chicago website and the coping section for hidden gluten. Australia is very good about listing allergens luckily. Thanks again for your replies

 

 

 

Excellent advice about the referral to the University of Chicago's celiac website!  Usually the genetic test for celiac disease is given after the DGP and TTG tests as a means of ruling out celiac disease.  About 30% of the population carry the genes for celiac disease but few go on to actually develop it.  Besides the TTG and DGP tests, patients should be given an IGA deficency test to validate the TTG iga and DGP IGa tests.   

 

Based on most leading researchers (including the University of Chicago), Most doctors recommend 8 to 12 weeks of consuming gluten daily prior to a celiac blood panel.  In the case of a failure to thrive in a baby, I would work with my doctor to insure the health of my child and deal with a diagnosis later even if that mean going gluten free as a test.  I would encourage the original poster to read our coping section and learn about hidden sources of gluten and cross contamination.  Both mom and baby can test for celiac later once baby has gained weight and is no longer in danger.  

 

 

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