My daughter had an upper EGD and I am awaiting the complete results, however the nurse told me that her lactase and sugar levels were normal. She also said that because of these results she probably does not have celiac. Is this correct? What exactly does lactase have to do with celiac?

I have never heard of that and sounds misinformed from my perspective. I am not sure how much you have read in the gluten file but many people on this board did not test positive for celiacs but got significantly better on a gluten free diet. So my advice would be to read everything you can, analyze your daughters symptoms, ensure she gets the full celiac panel performed, and even if her results are negative, try a gluten free diet to see if she improves.

Grace

Hi Diha,

Lactase is an enzyme that the tips of the villi produce. If the villi are damaged, they can not produce lactase. If there's no lactase, it can't break down lactose [sugar component in dairy]. This is the reason many celiacs can not do dairy. Many times after they have healed, they can tolerate some about of dairy.

Interesting about testing the lactase levels for CD. That's not something I have ever heard of.

http://www.medicinenet.com/lactose_i...ce/article.htm

How old is your DD? Blood tests can be unreliable in kids under 2 years old.

Many people who have lactose intolerance have CD - in this study about 25%. Not everyone with lactose intolerance have CD and not everyone with CD have lactose intolerance. As Al said, if the tips of the villi are damaged enough, there will be a deficiency in lactase. Hopefully you daughter will be diagnosed before this much damage is done. I hope that multiple biopsies were taken and that the pathologist knows to look for subtle signs of CD.

Is there CD in the family? Were your DD's blood tests positive? Which tests were run?

Hope the EGD went smoothly for your daughter. How is she feeling?
Anne

My daughter is 5 and weighs 33 lbs. She has grown taller within the past year but has not gained an ounce. She had 9 root canals at 2 yrs old, and was diagnosed with Lichen sclerosis at 4 yrs old. Not to mention her stomach issues. She has had the bloodwork done which was negative. She had the genetic test which shoed she has the DQ2 gene. My sister and niece have celiac (gold standard), my nephew also has celiac (enterolab), and my mother and brother are on a gf diet and feel much better. Her experience with the EGD was not good. The nurse yelled at her for and made her cry. They took her to the room before she was asleep (which she remember) and they let her scream for 10 minutes in the recovery room before they came and got me. She was scared.

I am so sorry to hear that the EGD was a nightmare. ((((((HUGS)))))) to you both.

Are you going to start a GF diet to see if she improves.

Anne