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Does This Sound Like It Might Be Celiac?


crstnol

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crstnol Rookie

My 17 month old daughter has had a terrible time with food intolerances. Her official dx right now is milk/soy protien intolerance as she had blood in her stools and cried all night long when I was consuming dairy and soy (I breast feed). Her 4 year old sister was the same way as a baby and was on Allementum until she was 18 months old, so that's where we started from. Even after completely eliminating all dairy and soy, she continued to have mucousy stools laced with blood. At 4 months old, I went on a total elimination diet where I ate only chicken, rice, peaches, potatoes and sweet potatoes for 2 months with little improvement. She finally saw a GI doctor at 6 months who put her on Vivonex TEN formula and after 10 days on that, the blood cleared from her stools but she was having terible eczema so we went back to breast milk. At 6 months she was dropped from the 50% to the 25%, at 9 months she dropped to the 10% so we started doing monthly weight checks. At 10 months she was at the 5% line, at 11 months she was below the charts, at 12 months she re-bound a bit to the 3% line, at 13 1/2 months she was just over the 3% line, at 15 months she was off the charts again. Currently she is just under the 5% line, so she is doing better. We had blood work done about 2 weeks ago that check for celiac among other things and most of the celiac screen came back normal, but the gliaden antibody level was 94 (they said normal would have been under 20), so they said it appeared she had a severe wheat allergy. Last week we had RAST testing done at an allergists, and the Wheat, along with 8 other items including dairy and soy, came back completely negative. She is scheduled to have a scope and biopsy done on March 16, but I'm wondering if it's possible to have celiac even with a negative blood test? Also, her sed rate (measures inflamation in the body) was high, as was her IgE level. Everything else was completely normal, except her cbc was showing borderline anemia. Do you think this sounds like we may be dealing with celiac? She eats bread (diary and soy free) all the time. In fact, that's one of the only things I can get her to eat!

Any help would be great!

Christy


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lovemyboy Rookie
My 17 month old daughter has had a terrible time with food intolerances. Her official dx right now is milk/soy protien intolerance as she had blood in her stools and cried all night long when I was consuming dairy and soy (I breast feed). Her 4 year old sister was the same way as a baby and was on Allementum until she was 18 months old, so that's where we started from. Even after completely eliminating all dairy and soy, she continued to have mucousy stools laced with blood. At 4 months old, I went on a total elimination diet where I ate only chicken, rice, peaches, potatoes and sweet potatoes for 2 months with little improvement. She finally saw a GI doctor at 6 months who put her on Vivonex TEN formula and after 10 days on that, the blood cleared from her stools but she was having terible eczema so we went back to breast milk. At 6 months she was dropped from the 50% to the 25%, at 9 months she dropped to the 10% so we started doing monthly weight checks. At 10 months she was at the 5% line, at 11 months she was below the charts, at 12 months she re-bound a bit to the 3% line, at 13 1/2 months she was just over the 3% line, at 15 months she was off the charts again. Currently she is just under the 5% line, so she is doing better. We had blood work done about 2 weeks ago that check for celiac among other things and most of the celiac screen came back normal, but the gliaden antibody level was 94 (they said normal would have been under 20), so they said it appeared she had a severe wheat allergy. Last week we had RAST testing done at an allergists, and the Wheat, along with 8 other items including dairy and soy, came back completely negative. She is scheduled to have a scope and biopsy done on March 16, but I'm wondering if it's possible to have celiac even with a negative blood test? Also, her sed rate (measures inflamation in the body) was high, as was her IgE level. Everything else was completely normal, except her cbc was showing borderline anemia. Do you think this sounds like we may be dealing with celiac? She eats bread (diary and soy free) all the time. In fact, that's one of the only things I can get her to eat!

Any help would be great!

Christy

Yes it is possible are son is on a gluten free diet without the biopsy and with the blood work negative but i've read its quite unreliable on children under two. So if they are going to do a bopsy right away do that otherwise try the diet you have nothing to lose and she could improve greatly, if she does you probably want to get your other daughter checked as well she could just have a less severe case. Good Luck my son was never that severe its only because his dad and grandfather have it that we are convinced his problems stem from that.

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    • Fayeb23
      Thank you that’s really helpful, hopeful won’t have to have a biopsy.
    • RMJ
      That means the normal range (i.e. not celiac disease) would be a result less than 14.99.  Your result is WAY above that. Some gastroenterologists would diagnose that as celiac disease even without a confirming biopsy because it is more than ten times the top of the normal range.
    • Redanafs
      Hi everyone. Back in 2022 I had blood work drawn for iga ext gliadin. Since then I’ve developed worse stomach issues and all other health issues. My doctor just said cut out gluten. He did no further testing. Please see my test results attached. I just need some direction cause I feel so ill and the stomach pain is becoming worse. Can this test show indications for other gastrointestinal diseases?
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      Thank you. These were the results TTG ABS NUMERICAL: > 250.0 U/mL [< 14.99]  Really don’t understand the results!
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      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
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