2 Year Old, No Visible Intestinal Damage, Waiting On Pathology

[karenlynn]

My 2 year old underwent an endoscopy and sigmoidoscopy on Wednesday. The doctor said everything looked good, nothing to be concerned about, and we'll have to see what the pathology report says in 2 weeks. I'm curious how likely it is that she could have celiac disease with there being no visible concerns to the doctor. I'm assuming that because of her age there's a strong likelihood that the damage wouldn't be extensive enough to be visible to the naked eye? Her blood tests were all negative (I wasn't given exact numbers, just says "negative"), but we were told that is common in young children. Between the blood results and the doctors visual assessment of her intestines I'm beginning to think it's very unlikely that she has celiac disease. If she doesn't then I don't know where else to turn to explain her "failure to thrive", distended abdomen, pain, excessive gas, constipation, diarrhea, irritability, etc :-(

[nvsmom]

I believe a biopsy is squally needed in order for damage to be detected. There are celiacs who have damage to the naked eye, but I believe that they are the minority.

Hopefully someone else who knows more about the endoscopy will chime in. Bet wishes.

[Fenrir]

Mine looked fine during the scoping as well but positive under biopsy. My GI said that most celiac don't have visible damage.

[Cara in Boston]

Keep in mind that if the biopsy is negative, it only means that damage was not found . . .NOT that your child does not have Celiac.  It can confirm a celiac diagnosis but cannot rule it out.  If you have completed all medical tests, (which are not 100% reliable in children) you should try the diet anyway and consider it the "final" test.  If after 3 months you have noticed an improvement, you have your answer.  There are celiacs who test negative on all tests but their symptoms go away once they are gluten free.  There is also Non Celiac Gluten Sensitivity which basically means you have the symptoms but not the antibodies.  Treatment is the same:  gluten free diet.

 

With her symptoms I would not be surprised if you saw improvement within the first few days.

 

My son shot up 3 inches in a month as soon as he went gluten free.  We hadn't even noticed he had fallen off his growth curve because he started out taller than average.

 

Once you start the diet, keep a calendar or journal of all symptoms (include general mood - as behavior is a big symptom for children) . . . sometimes the changes are gradual and hard to see.

 

Best of luck to you.

[karenlynn]

Thanks, everyone. The biopsy results are finally beginning to roll in and I'm feeling tremendously discouraged :-( Thus far all we have are the results of the Lactase Tissue and Sucrase Tissue tests.

Surcase, Tissue: 37.0 (>=25.0)

Lactase, Tissue: 18.5 (>=15.0)

So from what I gather the tests are both normal. From what I can find, children usually have very high lactase levels and as we grow the number begins to decrease. It seems to me that for her to be close to the cutoff for lactase when she's only 2 years old is interesting, but I know it won't mean anything. From what I understand of villous atrophy (and I'm not a doctor so I may not be understanding this correctly at all) you are pretty much guaranteed to have lactase deficiency when villous atrophy is present because the lactase enzyme is found at the tip of the villi. If the lactase levels are normal then I assume her villi are in tact or only very very minimally damaged (certainly not damaged enough to warrant a celiac diagnosis). Is it possible to have celiac disease and not have lactase deficiency?

I truly believed we were on the right track. Just the other day she had PB&J on whole wheat bread for lunch and for dinner she had whole wheat macaroni and cheese and I watched her belly grow more and more distended with each meal. She sat at dinner and just cried. That night I thought "tomorrow we're in for a nasty poop!" She woke up the next morning with greasy looses stool (tremendous amounts of it) that smelled so strong and foul that I could smell it before I entered her bedroom (she's in diapers). I really hoped for a solid diagnosis for her. At this point we'll likely have to just remove gluten and settle for no diagnosis.

[Nebraskamommy]

I know how frustrating it can be to not have a 100% clear cut diagnosis. Let your mommy instinct be your guide. If you know she can't handle gluten, then switch to a gluten-free diet and keep track of her symptoms. You don't need a dr to tell you to change her diet.

My son was just diagnosed in January and we went to 3 drs. Two said yes Celicas and one said no not Celiacs. We never ended up doing the scope, but his improvment on the diet alone has been tremendous. Many drs still don't know much about Celiacs and getting a diagnois is not always black and white. Try the diet and if her symptoms improve you know gluen is a problem, whether it be Celiacs or gluten sensitivity.