Celliac Or Not--Very Confused

[philandkyle]

My 6 year old son had an endoscopy a couple of weeks ago to monitor acid reflux that he seemed to be born with. The test biopsies showed very little damage from the acid in the esophagus, but the biopsy of the small intestine was positive for early signs of celiac disease. The blood tests were all negative, so the doctor said not to change his diet yet and they would retest in 6 months. I called our pediatrician, when she got the results she immediately had me have my younger son tested and said the older son has celiac. He has always had acid reflux, constipation and other symptoms that I have been reading are inked to celiac (geographic tongue, weak tooth enamel, asthma, and keratosis) the list goes on. My younger sons blood test came back today-negative as well. They are not sure where to go with him now, but he has ADHD and many dye allergies. Not sure is anyone has any thoughts about either or the boys or what I should do.

Thanking you in advance for your thoughts and support.

[GlutenFreeManna]

If the biopsy showed celiac then he HAS celiac! Everything I have ever read says the biospy trumps the blood test--the blood test is frequently false negative, especially in young children. False positives test results are extremely rare (if even possible). Your doctor is an idiot for not diagnosing him and telling you to wait 6 months. If you need an official diagnosis, take the biopsy results to another doctor that will read them properly and also test your boys for vitamin deficiencies to see if they need extra supplements. Meanwhile, get your boys on a gluten free diet asap. There is no reason to put them through any more stomach ailments because of one doctor that doesn't seem to know anything about celiac disease. This is not an "allergy" that children might outgrow, this is an auto-immune disease that can lead to more serious illnesses if left untreated. The only treatment is to avoid gluten. The good news is that you have the test results already, so you don't need to keep subjecting your boys to the effects of gluten. The bad news is few doctors know much about celiac's. You will have to be an advocate for you boys' health. You may have to educate your doctors if you are unable to find one that knows more about celiac's disease. The people on this board are great, though, and will answer any questions or struggles to have with this huge change.

[Christine E]

The pediatrician diagnosed him. He has celiac. You can ask for a genetic test if you want. My son was age one when his endoscopy showed " changes". He's now 6 and has never had a positive blood test (annual). His genetic test was positive. He was severely constipated and also was supposed to have had reflux. All resolved on gluten-free diet. I strongly encourage you to work with your ped who seems to be more up to date on celiac. Waiting 6 months could be disastrous.

[mushroom]

Your older son definitely has celiac disease and should be on a gluten free diet; your younger son is probably is the process of developing it, and his ADHD could well be in response to the consumption of gluten. If they were my children I would have them both eat gluten free. I am not a believer in waiting for lots of damage to diagnose celiac disease, because some of that damage (like my psoriatic arthritis) can turn out to be irreversible. You may well find that your younger son's ADHD resolves on a gluten free diet. It is certainly worth trying it for him and seeing what difference it makes.

[philandkyle]

I received a call from our pediatrician. She does not think we should have little guy biopsied until he shows signs of the disease. I am confused about what to do. I am afraid to just start the diet, because what I have read says it will cause future test to be falsely negative.

Thank you for all of the advice so far.

[SweetDsMom]

My recent experience - through blood tests, DS was diagnosed w/ celiac by our regular ped. We immediately took DS off of gluten and by the end of the weekend, noticed an improvement.

I've heard from a few people (even on these boards) that we have to keep him on gluten so that the ped G/I can effectively test him.

We saw the ped G/I the very next week. want to know what he said to me as soon as we walked in? "You've taken him off gluten, right?". We have the blood tests- he dosen't need to run more blood tests!

We will do an endoscopy in a couple weeks, but the G/I wanted DS to get healthy first (he was malnourished) and hasn't made any mention of DS needing to be on gluten for the endoscopy to be effective.

[philandkyle]

I decided the best thing to do was to try to find a celiac specialist. With a very little effort I was able to find the name of Stefano Guandalini at Comer Children's Hospital in Chicago. He is listed as a reference on many of the Celiac sites and only a little over an hour from my home. My son's will be seeing him the first week of August. I have already arranged to have their medical files from GI and pediatrician sent over. I figure he is going to be able to tell me what is going on.

Thank you all for the great information. You are all right, no need to make my son sicker while the doctor waits another 6 months to make up his mind.