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Has Anyone Had Negative Ttg, Ema And Test Positive On Biopsy?

zack

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zack Rookie
zack
Posted

I am looking to see how many parents have children that tested negative to blood work and positive with a biopsy. My son is 10 seees a gastro in boston and is going to have a biopsy in november.

He has constitutional growth delay by 2 years. He weighs 56lb.( he gained 4lbs since Apil 20th till now from adding boost drink to his diet 1 drink a day. From age 9 to 10 he gained less than 1 pound. He has all classic symptoms of celiac. His gastro wants to give him 3 boost drinks a day 1 with every meal. If i stop giving him them he losses weight. When he was a baby he would projectile vomit his formula and my breast milk. I switched him to prosobee (soy)and he never vomited his bottle again.Any suggestions on what other tests to ask for??? pam

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seezee Explorer
seezee
Posted
I am looking to see how many parents have children that tested negative to blood work and positive with a biopsy. My son is 10 seees a gastro in boston and is going to have a biopsy in november.

He has constitutional growth delay by 2 years. He weighs 56lb.( he gained 4lbs since Apil 20th till now from adding boost drink to his diet 1 drink a day. From age 9 to 10 he gained less than 1 pound. He has all classic symptoms of celiac. His gastro wants to give him 3 boost drinks a day 1 with every meal. If i stop giving him them he losses weight. When he was a baby he would projectile vomit his formula and my breast milk. I switched him to prosobee (soy)and he never vomited his bottle again.Any suggestions on what other tests to ask for??? pam

seezee Explorer
seezee
Posted
I am looking to see how many parents have children that tested negative to blood work and positive with a biopsy. My son is 10 seees a gastro in boston and is going to have a biopsy in november.

He has constitutional growth delay by 2 years. He weighs 56lb.( he gained 4lbs since Apil 20th till now from adding boost drink to his diet 1 drink a day. From age 9 to 10 he gained less than 1 pound. He has all classic symptoms of celiac. His gastro wants to give him 3 boost drinks a day 1 with every meal. If i stop giving him them he losses weight. When he was a baby he would projectile vomit his formula and my breast milk. I switched him to prosobee (soy)and he never vomited his bottle again.Any suggestions on what other tests to ask for??? pam

We found out a few months ago that my daughter has celiac. Her blood tests and biopsy were both positive. We went to three different pediatric GI doctors and I found that they weren't nice or helpful until we got one that specializes in celiac. I think many general practice pediatric GIs have out of date and misinformation. Try to move your biopsy up sooner. If it's gluten that's making him sick it's just going to get worse. Try to keep the hospital from dragging this out.

We went through Children's in Boston and got our endoscopy/biopsy moved up due to a cancellation. My daughter was starting to feel icky and I threatened to stop feeding her gluten and they called back and put me in for the following day. Once she was diagnosed for sure, I switched to a doctor at Children's who specializes in celiac. I asked her about tests etc and she said it's tricky because you can have positive blood and neg. biopsy, both tests negative, or neg. blood positive biopsy. etc. and still have celiac. They are finding stuff out all the time.

Anyways, she is feeling much much better, gaining weight, feeling energetic and positive. It's worth it to pester them and get this done.

nasalady Contributor
nasalady
Posted
I am looking to see how many parents have children that tested negative to blood work and positive with a biopsy.

I'm so sorry to hear about your son's health problems.

Unfortunately many children with celiac have negative bloodwork and biopsies. A trial with the gluten free diet may be the best way to determine whether or not your son has problems with gluten.

My granddaughter Carly had bloodwork and a biopsy at the age of 2; she had all of the classic symptoms of celiac disease but both tests came back negative. About a year later, her doctor decided to do the biopsy again. At that point Carly was skin and bones....it was very scary. This time the biopsy was positive. Her bloodwork has never been positive though, and the doctor said she does not have either of the usual celiac genetic markers (although they are retesting her DNA now to be sure).

My other granddaughter/adopted daughter Emma had negative bloodwork for celiac disease. Her doctor decided not to do the biopsy EVEN THOUGH at the age of three Emma still wears size 12-month clothing!!! I put her on a gluten free diet anyway and her eczema and keratosis pilaris have improved greatly AND she is beginning to gain weight!

Emma does have a celiac genetic marker (HLA DQ2); she clearly has a gluten problem, and because of our family's tendency to develop autoimmune diseases, I feel it's more likely that she has celiac disease than non-celiac gluten intolerance (she has other autoimmune diseases too).

Good luck with everything! Please keep us posted about your son....

JoAnn

GottaSki Mentor
GottaSki
Posted

My children have all had negative blood work, but have various Celiac Symptoms. One son and one grandson greatly improved on gluten-free diet. Others still considering gluten-free.

My own tTG was only marginally elevated - endo biopsy and other blood tests confirmed dx.

zack Rookie
zack
Posted
  • Author

Thank-you all for responding!!! I have sent away for the gene test from (entrolab? ). I figured it was better to do the gene test since my daughter over the past 7 months started complaining after she eats that her stomach hurts. My pediatrician did a ttg on her and it was negative. I will be happpy if the gene test for both my kids are negative. When i look at my son i truley belive he has gluten or wheat sensitivity. Thanks again

Chelsea-A Rookie
Chelsea-A
Posted

My son had a 0 TTG-IgA but his total IgAs were borderline low. His biopsy was positive for celiac at 13 months old.

I aggree with the previous post. Sometimes just trying a gluten-free diet is the only way to know.

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