Is Gluten Getting In Her?

[SYBERBUNNI]

I posted yesterday about wondering if I have celiac. Going over the posts that were out there got me thinking. I wonder if my 10 yr old daughter who is celiac is getting gluten in her from some place.

I know they told me normal in between 15-20. She was diagnosed Feb. 2009. Started the diet March 2009. Her first test she came back @ 100. Six months later they were amazed it came back @ 27. Then six months after that she tested @ 20. Also, she was vitamin D deficient. At the end of winter she stopped taking the vitamin D. Started her back on it after summer was over.

Then she got really sick with bacterial pneumonia. On and off recently she has been complaining about body aches and headaches. NO, stomach pain! She is looking that gray pale again dark under the eyes.

Started thinking she may have Hashimoto

[Dixiebell]

I take my D year round. It is possible her levels got low again. You might want to have the D tested again too.

[kareng]

I would see if they would test for thyroid and anemia. I wasn't much older than her when I got a thyroid infection. I also, had a sinus infection at the time.

My son got the blackish, sunken eyes when he would get dehydrated. He is horrible about drinking enough unless he is camping. I try to keep low cal lemonade around to tempt him to drink. He's 14 now and knows better. Can't hurt her to have an extra glass of water in the morning. They don't usually drink much at school.

[T.H.]

While I think there are definitely other possibilities - thyroid definitely comes to mind - the aches and pneumonia and such - does make me wonder if you might be right about the gluten.

My daughter had no stomach pains before going gluten free (she's 12 now, been gluten free a year). After about 6 months, she started getting stomach pains, so we were able to tell better when it happens. But as we've been going along here, we've now had some incidents that have made me realize she IS getting gluten, even though we've been very careful with her. And there are other signs that I always thought were just her - an emotional little kid who has trouble sleeping - that seem to be related.

She had a very definitive reaction one night when we only ate three things. They were gluten free, they were all she'd eaten for hours, and we have a gluten-free house. One of the companies tests every batch of food to be below 20ppm. The other will send off its products for testing if you have a reaction. So we asked for that, and they came back at less than 10ppm.

I was thinking at the time that maybe she'd managed to get gluten some way we didn't know about. We dropped the last remnants of processed foods and went to fruits and veggies. Then we started adding back in only getting products that have tested for ppm of gluten - usually certified - and she's reacted to almost every product that tests less than 20ppm. We dropped all those.

And now she's reacting to almost every product we've tried that is 10ppm or less (and I had a gluten reaction to two of them, as well, so I'm comfortable that she was, too). Now that we know what we're looking for, it's really easy to see. I've told her to let me know if she has any tummy pain, even if it's small, and we'll just note it down for our food journal. No big deal. And we've discovered a definite pattern.

1. food followed by big tummy pain followed by insomnia and massive crying jags. Definite gluten. I'd begun to suspect the crying was caused by it, but the insomnia was a surprise.

or

2. food followed by little tummy pain followed by mild insomnia and low frustration tolerance and small crying jags. That was a surprise. I'm honestly wondering at this point just HOW sensitive she is, and how much of the emotional child I have is not emotional at all, if she eats safely.

It turns out, she always assumed the small tummy pain was just 'feeling hungry.' Even though it's always happened AFTER she's eaten food. Makes me wonder, if the tummy pain is milder but she still has other problems, if there will be something that can cause her other issues and have no tummy trouble at all, you know?

[Mari]

This website may help you understand the various problems caused by gluten

Introduction - The Gluten Syndrome, GlutenSensitivity, Gluten ...

The Gluten Syndrome.net. top. Patient perspectives on gluten grain intolerances and sensitivities . including the celiac disease subset,

www.theglutensyndrome.net

I had the genetic test for HLA DQ done at Enterolab.com and it was very helpful in my understanding my problems with gluten. The molecular serology test (Prometheus Labs) gives similar information. Both my parents gave me a gene which predisposed me to gluten problems. One gene put me at risk for autoimmune Celiac Disease and the other for not-autoimmune non-celiac sprue (Leaky Gut Syndrome). My risk of developing these problems was quite high, about 77% and having both these genes made the conditions worse. Any children I had would have gotten one or the other of these genes. All of them might develop gluten problems - either Celiac Disease or non-Celiac sprue. There are many different DQ2 genes and many different combinations. So you can see how 2 children could have inherited different gluten problems, or if both the parents carry a DQ gene which does not put the child at risk for gluten problems, could not develop those problems.