New Here With 3 Year Old

[BemLmom3]

Hi

I am sooo glad I found this site! I am sure I will learn so much here. I do have a few questions I hope I can get some help with. I will try to make this short as I can. My 3yr 10 month old adopted daughter has Fetal alcohol syndrome I decided in March of this year to try the Gluten-free Casein-free diet, mainly due to behavior and FAS symptoms. Within 2 weeks I saw a big difference. I was not too strict but did pretty well. Around May her dev ped said if I really wanted to "test" the validitity of the diet I could take her off for a week and then I would know for sure. So I did, a week later was okay but after 2 weeks behavior was awful and she had bad dark circles under her eyes. I also should mention she has always battled constipation and when she does go it is huge and very smelly. So back to the diet we went but I had introduced oats a month later and her behavior(this is what I was basing everything on then)seemed ok with it. Well then the beginning of this month we went to a birthday party and mom guilt kicked in, I decided to try and reintroduce wheat, chicken nuggets. The next morning her behavior was off but I was determined all would be ok. So I continued with the nuggets, regular pasta and regular pretzles. After 9 days I realized it was not fair to her, again dark circles and behavior downhill and sleep worse. The day after, no more wheat, that night she threw up everywhere. I thought it was a virus but it was very sporatic and no one else got it. Would it take that long after we started wheat for it to be that to make her physically sick? She threw up, once a day every other for 5 days. I took her in to the Dr, turns out she is also not growing. Actually in 11 months she lost a pound and only grew 1 inch. She has not had vomiting in the past and has been an ok eater, seems to get enough calories for her age ect. The Dr dx FTT and is doing testing, he said she was a good candidate for Celiacs and is doing the blood tests. I worry the results will not be accurate due to being mainly gluten-free again. It had been 6 days since she had wheat. Would that still be in her system for accurate results? She is still eating oats but after this morning I will probably remove those too. She was fine yesterday and this am. She ate oatmeal for breakfast and then the rest of the day acted as if her tummy hurt. By dinner she was looking bad and had a diarrhea blow out. Was doubled over with pain. Just wondering if this all sounds indeed like Celiacs? Will the tests be accurate? Obviously she has a gluten sensitivity but does she have Celiacs? And why is she not growing even when we have mainly been doing gluten-free diet? Any info is greatly appreciated!!!!

Thank you

Sharon

[Ursa Major]

Hi Sharon, and welcome to these boards. It is obvious that your daughter should be gluten-free, which includes not eating any oats (in America they are usually contaminated with wheat). Also, it would be best if you also take her off dairy and soy (if she eats/drinks any).

Don't be surprised if the tests come back negative. They are very inaccurate for children under six to begin with, and with her not eating much wheat they will probably (but not necessarily) be negative.

It doesn't matter if she is 'just' gluten sensitive or has what is now considered the 'official' version of celiac disease. The treatment is the same, which is to remove gluten.

Failure to thrive is a very common symptom with celiac disease, as are behaviour problems, diarrhea, stomach aches and everything else you describe.

The problem with a mainly gluten-free diet is, that it doesn't allow her intestines to heal. Only a 100% gluten-free diet will do that (as well as dairy and soy free I am afraid). That would be why she hasn't grown.