I'm completely overwhelmed trying to understand all of these tests/results and what the doctors are telling me. I really appreciate any help you can offer!
Two of my daughters are currently undergoing testing for celiacs.
My 2 year old is "failure to thrive". She's below the 3rd percentile in weight (she was 8lbs 12oz at birth), greasy and mucousy stools, alternating constipation and diarrhea, extremely distended abdomen with the skinniest little arms and legs, speech delay, extreme irritability, etc. Her celiac blood panel came back negative (actual numbers aren't listed on the lab work), her vitamin levels are all the lowest possible levels within the normal range (in other words, none are in the low range but they're JUST within normal), her alkaline phosphatase and white blood count were high (not extremely). She tested negative for cystic fibrosis. She is scheduled for an endoscopy and sigmoidoscopy in 2 weeks. Her GI said that the blood work is very unreliable in a child who has just recently turned 2 years old.
My 5 year old has been struggling with chronic constipation and UTIs. Over the last 2 years she has developed a rash that comes and goes (circles of what the doctor has diagnosed as eczema on the trunk of her body, arms, and knees). Over the last month she has begun complaining of severe abdominal pain. She will randomly begin to scream and clench her belly. The doctor said she was constipated and put her on miralax. After a month on miralax and her stools coming soft and regularly she is still complaining of abdominal pain. Now that she is no longer constipated we have noticed that her stools are a pale sort of yellow orange and they float. Her primary care doctor drew her blood last week and her DGP IgA was 4 (0-19 normal), her DGP IgG was 20 (0-19 normal), the endomysium titer was negative <1:10. I am still waiting (over a week) for the doctor to call me and explain the results, but the nurse said everything looks normal.
Everything I can find makes me think that the 5 year old's DGP IgG being high should warrant further investigation. I want to be prepared when the doctor calls in case he also tells me everything is normal. Is it likely that either of my children could have celiacs based on the results we've gotten thus far or does it seem unlikely?
I appreciate your thoughts and advice!
Two of my daughters are currently undergoing testing for celiacs.
My 2 year old is "failure to thrive". She's below the 3rd percentile in weight (she was 8lbs 12oz at birth), greasy and mucousy stools, alternating constipation and diarrhea, extremely distended abdomen with the skinniest little arms and legs, speech delay, extreme irritability, etc. Her celiac blood panel came back negative (actual numbers aren't listed on the lab work), her vitamin levels are all the lowest possible levels within the normal range (in other words, none are in the low range but they're JUST within normal), her alkaline phosphatase and white blood count were high (not extremely). She tested negative for cystic fibrosis. She is scheduled for an endoscopy and sigmoidoscopy in 2 weeks. Her GI said that the blood work is very unreliable in a child who has just recently turned 2 years old.
My 5 year old has been struggling with chronic constipation and UTIs. Over the last 2 years she has developed a rash that comes and goes (circles of what the doctor has diagnosed as eczema on the trunk of her body, arms, and knees). Over the last month she has begun complaining of severe abdominal pain. She will randomly begin to scream and clench her belly. The doctor said she was constipated and put her on miralax. After a month on miralax and her stools coming soft and regularly she is still complaining of abdominal pain. Now that she is no longer constipated we have noticed that her stools are a pale sort of yellow orange and they float. Her primary care doctor drew her blood last week and her DGP IgA was 4 (0-19 normal), her DGP IgG was 20 (0-19 normal), the endomysium titer was negative <1:10. I am still waiting (over a week) for the doctor to call me and explain the results, but the nurse said everything looks normal.
Everything I can find makes me think that the 5 year old's DGP IgG being high should warrant further investigation. I want to be prepared when the doctor calls in case he also tells me everything is normal. Is it likely that either of my children could have celiacs based on the results we've gotten thus far or does it seem unlikely?
I appreciate your thoughts and advice!
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