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Testing Daughter For Celiac

Nantzie

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Nantzie Collaborator
Nantzie
Posted

I'm surprisingly upset about this, considering what a God-send finding out about celiac has been for me personally.

My daughter just turned 4, so she has been potty trained for a while now. I'm not even involved in the process anymore, if you know what I mean. The whole time I was involved in the process, everything looked normal.

A few weeks ago they called me from preschool because she had diarrhea several times that day, and didn't make it to the potty in time one of those times. I asked the teachers as much as I could about it, and it raised my suspicions a little. But she had been through a period where she was getting one cold after another, and then really bad allergies. And then when I took her to the doctor about her allergies, the doctor said that she's definitely allergic to something because she's got such dark circles under her eyes and said that they even call them "allergic shiners". Crud!

I had told her that mommy needs to see your poop, which she would forget about and flush and THEN tell me. After a few days, I did end up seeing it and it's pale (kinda the color of a cardboard box, but a little yellower), but it wasn't floating. I knew right then that I needed to arrange to have her tested, but I still kept thinking that maybe it was from being sick.

Well, this afternoon, I saw it again, and it's the same color, this time floating, and foamy. Crud!

I ordered the Enterolab $99 gluten test, rather than the whole panel. I can't afford the whole panel right now.

I'm going to make an appt with her doctor to let her know what's going on, and let her know about Enterolab and the test I ordered. I would wait and jump through the hoops, but I'm not up for a fight with her doctor if she still has old information on celiac. I just want her to be healthy.

I know that both my kids are susceptible to gluten problems since they both have two copies of the genes, but I was praying that they wouldn't have any problems until they were at least a few years older so that they could understand a little better.

Nancy

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alexisb Rookie
alexisb
Posted

It sounds like you're on the right track. I'm very sorry that this has surfaced, but you are so blessed to be aware of celiac as you're parenting. Good luck and let us know what happens.

Guest nini
Guest nini
Posted

four is not too young to learn about the diet and get the hang of it. It's actually better to start younger in my opinion. My daughter was 3 when we went gluten-free, and she is now 6 and has a very good handle on the diet and knows to ask before eating ANYTHING...

it's not the end of the world if your children have to be gluten free, in fact they will end up eating healthier than the rest of their peers... I am constantly getting feedback about how healthy my child eats and how HER choices are always healthier choices...

TCA Contributor
TCA
Posted

I think it's easier to start when they are young, that way they don't feel so much like they're missing out on things. Just be thankful you found it and hopefully can prevent other health issues. good luck!!

Ursa Major Collaborator
Ursa Major
Posted

Nancy, since your kids have two celiac genes, it's safe to say that your daughter has now developed celiac disease. As you're waiting for your enterolab kit, you might as well put her on the gluten-free diet, to make her feel better as soon as possible. You don't have to eat gluten for the enterolab tests!

And why not put the whole family on a gluten-free diet to make life easier for you, and prevent your son from developing full-blown celiac disease? That's what I would do, anyway. And if they have two copies of the genes, your husband must have given them one, and would probably benefit from being gluten-free as well.

Guest cassidy
Guest cassidy
Posted

I'm sorry to hear you are going through that.

At least you understand everything and you know about the diet since you are dealing with it. That will make it easier for her, but it still is not good news.

Nantzie Collaborator
Nantzie
Posted
  • Author

Yea, you all are right. My daughter is such a picky eater that I was just crossing my fingers that it wouldn't surface for a couple more years. But then there was a post a week or so ago where one of our members thought her young daughter who would only eat veggies (I think that was it) might have a gluten problem. We all gave her some just regular mommy advice on that type of stuff, and then when she put her daughter gluten-free, she started actually wanting to eat other things. I hope that's true for my daughter. I had never thought about that being a possibility.

And I should put everyone on a gluten-free diet. Definitely my kids. My husband was such a horrible &$% about celiac at first, called me a hypochondriac, told me that I wanted to be sick so I could get attention, blah, blah, blah, that I haven't even told him I got the kids genes tested. Especially since his family was just as bad, if not worse, and that means they carry it. I REALLY don't want to have THAT conversation. I have to say that my husband and his family have completely turned around in regard to ME having celiac. They're all really great now. BUT, if I was to suggest that they may need to be tested for it, it would get really ugly again. But I'll do it. I just have to get the guts and find the appropriate time.

Hopefully my husband will be willing to be tested at least.

Nancy

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Gentleheart Enthusiast
Gentleheart
Posted
Nancy, since your kids have two celiac genes, it's safe to say that your daughter has now developed celiac disease. As you're waiting for your enterolab kit, you might as well put her on the gluten-free diet, to make her feel better as soon as possible. You don't have to eat gluten for the enterolab tests!

And why not put the whole family on a gluten-free diet to make life easier for you, and prevent your son from developing full-blown celiac disease? That's what I would do, anyway. And if they have two copies of the genes, your husband must have given them one, and would probably benefit from being gluten-free as well.

Hi Ursula,

May I interject a question because of what you said? If a person has a celiac gene And a gluten intolerant gene and Enterolab also says they have active antibodies and mild malabsorption, is it just assumed that they have actual celiac? At that point is a biopsy the only way to know or do you pretty much know from that kind of stool result? Thanks!

Ursa Major Collaborator
Ursa Major
Posted
Hi Ursula,

May I interject a question because of what you said? If a person has a celiac gene And a gluten intolerant gene and Enterolab also says they have active antibodies and mild malabsorption, is it just assumed that they have actual celiac? At that point is a biopsy the only way to know or do you pretty much know from that kind of stool result? Thanks!

Well, Enterolab can't diagnose you with celiac disease, but with gluten intolerance. Since the treatment is the same (and if you're gluten intolerant you'll likely develop active celiac disease sooner or later) it doesn't really matter. There are some experts who would like the distinction in diagnosis abolished altogether.

And once you're diagnosed by Enterolab, a positive response to the gluten-free diet is all that is needed to confirm a diagnosis, a biopsy wouldn't be needed. Biopsies are an unreliable method of diagnosing celiac disease anyway. They'll only catch it if extensive damage to the villi is done, but not if there is only mild damage.

Personally I believe that it is preferable to PREVENT that extensive damage with a gluten-free diet, before it gets so bad that you're desperately ill.

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