Please Give Advice, Suggestions I'm Desperate!

[MomofBrooke]

I'll try to make a long story short. I've only just begun researching celiac. My daughter (17 months) has been experiencing extreme diarrhea for over three months now. I'm afraid to leave her in the child care area at church, or with anyone for that matter. I'm sure many of you have experienced something like this before as parents. The diarrhea is EVERYWHERE! Her food is not even digested in her stool. Everything comes out whole. We discovered her lactose/dairy intolerance when formula was introduced at 5 months. She had such a severe reation she nearly went into anaphalaxic shock (sp?). Her stool has been tested and all results for bacterial infection have come back normal. She had blood drawn Wednesday to test for Celiac. Every single sign/symptom I have read match with my daughter's symptoms. I found out today that part of the tests have come back and they are normal. This is frustrating me b/c I took her off of gluten for two days and like a miracle- NO DIARRHEA!! And her personality has completely changed. My question is this- if anyone has experiencecd "normal" test results, but firmly believe their child has celiac, where do I go for further testing/physician care??? PLease help!

[Ridgewalker]

Ohh, I feel for you! It sounds like you're going through a rough time!

Well, the problem here is that Celiac blood tests are unreliable in children under the age of 6, I believe, and even more so under the age of 2. False negatives are quite common in little kids!

I'm betting you'll have several people chiming in differing opinions on what your next step might be. My own personal two cents-- She got better when you took her off gluten for 2 days?? Then take her back off it! I mean, isn't that the ultimate goal- to get her better? If she suddenly gets better as soon as you take her off gluten, then to me, that indicates a major problem with gluten... Whether it be "gluten sensitivity," "gluten intolerance," or "Celiac Disease." We have a lot of discussions around here about classifications, etc

For testing after the blood tests come back negative... There are companies out there that do stool testing, which is supposed to be much more sensitive. They are somewhat controversial, and not accepted by all doctors yet, however... I think what they do makes sense, and plan on using one of them in the future for my kids and myself. They are generally not covered by insurance companies. One popular company is Enterolab- the website is www.enterolab.com Their website is pretty informative, so check it out if you're interested. They send you a sample kit in the mail, you collect the stool sample, and mail it back to them. No Dr orders needed.

If you need help getting her 100% gluten free, we will help. It's tricky at first, as gluten hides everywhere!

-Sarah

[Ursa Major]

I completely agree with Sarah. If your daughter got better being off gluten, who cares about those test results! They are probably false negative, as that is extremely common with little kids.

Just end the agony and put your little one back on the gluten-free diet, so she can feel well, grow and be happy. Because the next problem will likely be 'failure to thrive', and she'll stop growing, due to not absorbing her nutrients. You can prevent that by a simple thing like a change in diet.

If you want to be sure, just do the Enterolab test! But I am glad they checked for bad bacteria as well. My little granddaughter was just tested (she is 16 months old), and she tested positive for gluten intolerance, but also for harbouring some very bad bacteria, so now she is on antibiotics and probiotics to fix that.

[MomofBrooke]

Thank you both for your responses. I will continue with the gluten free diet and pray that she continues to feel better!

I am going to look into the enterolab....Thanks again!