Still Waiting For Diagnosis

[cam'smom]

I am so relieved to have found this site! And am desperately hoping that someone will be able to identify with my son's story.

It all started in January, I won't detail everything here, but my 1 year old had loose, stinky, huge stools with microscopic amounts of blood in them - usually about 4 nappies a day. The ped said it could be celiac but the blood test came back negative. However I cut gluten out of his diet and the stools decreased from 4 nappies a day to 1, and within a month were back to normal. So, he has been gluten free now for 6 months.

The only thing is we still don't know for certain that it is celiac. There have been a few times when he has eaten food with gluten in and then his stools are all loose and horrible again, with tiny black flecks in them. This also happened in the beginning and the doc tested them but said the flecks were not blood. Has anyone else experienced this? Once the stool firms up the flecks go away, so they seem to be related to when he eats the wrong food.

I am very careful with what I feed him and at one stage I was making him a gluten-free bread recipe that contained yeast. He started reacting to something and I am wondering if it was the yeast - has anyone heard of yeast being a problem with celiacs?

I would really appreciate it if anyone could respond if their little one's story is similar to mine. The ped said that celiac is very unusual and unlikely to be the problem, but it seems to me that it is the problem. And, she has no idea what else it could be.

[ShayFL]

Welcome to the board!

I hope someday they have a way to dx Celiac without blood/biopsy that is more certain. For now (especially with children under 6) the best we can do is test (and if Neg) try the diet. You have had a positive response to the diet and that is your answer to the problem. Thank goodness you caught it early before a lot of damage set in and other autoimmune diseases showed up.

Whether it is Celiac or Gluten Intolerance the solution is the same....gluten-free diet. If it were me and mine, I would ask for genetic testing for Celiac. Genetic testing DOES NOT dx Celiac. But my thinking (and this is just my opinion) is that if my child obviously responds poorly to gluten and has Celiac genes then I can feel really SECURE in my decision to keep him gluten free for as long as he lives with me. Having a Celiac gene does not mean you will develop Celiac. But with an obvious sensitivity and the genes, it just makes sense to avoid gluten.

At some point when you can no longer control his eating, he may decide to eat gluten foods (teen years are suspect) and if he reacts badly he will have to decide for himself if he wants to continue eating it (and if he wants to test for Celiac).

All you can do as a Mom is focus on the now and keeping him healthy until he is an adult. gluten-free sure looks like the right thing for you.

Ask the Ped if he can ease your mind even more by ordering the Genetic Test.