Disaccharidase Levels?

[KBart]

My daughger's biopsy had some inflammation and one sample of villi that was shortened, she also had a positive TTG blood test and clinical symptoms, but the damage was not severe enough for the GI to give her a celiac disease diagnosis. Just a little background there. We are getting a second opinion.

My question is about the disaccharidase levels. Her lactase level and all the other digestive enzymes were normal. So does that mean she shouldn't have problems with lactose? I gave her ice cream last night (gluten-free) and within the hour she said she felt sick - like she had to throw up. She had a little gas and just felt bad. So if lactose isn't an issue, is there any correlation between the ice cream and her feeling poorly? And do the disaccharidase levels need to be reduced for celiac disease to be present?

[cyclinglady]

She might be reacting to the milk proteins (casein and whey). Start her out on hard cheeses and yogurt which contain very little lactose. If she still has issues, then you can assume that she is intolerant to the milk proteins. If she has celiac disease (Doctor: "Let's wait until there is severe damage because I can not condem a child to a gluten-free existence....") villi damage prevents enzymes to be released making her (hopefully) temporarily lactose intolerant.

Were her diaccharidase levels obtained through biopsy? I would imagine, like celiac disease, damaged or undamaged areas areas could be missed.

Edited: I am not a doctor! Just a mom who has celiac disease and was undiagnosed for so long! Hence, my sarcasm. I just hate to see kids suffer!

[KBart]

She might be reacting to the milk proteins (casein and whey). Start her out on hard cheeses and yogurt which contain very little lactose. If she still has issues, then you can assume that she is intolerant to the milk proteins. If she has celiac disease (Doctor: "Let's wait until there is severe damage because I can not condem a child to a gluten-free existence....") villi damage prevents enzymes to be released making her (hopefully) temporarily lactose intolerant.

Were her diaccharidase levels obtained through biopsy? I would imagine, like celiac disease, damaged or undamaged areas areas could be missed.

Edited: I am not a doctor! Just a mom who has celiac disease and was undiagnosed for so long! Hence, my sarcasm. I just hate to see kids suffer!

That makes sense. Her levels were obtained through biopsy analysis. So yeah, since her damage was patchy, maybe the levels can be too?

[cyclinglady]

I do not know, but it may be worth asking the doctor or doing more online research.