Is It Bad For My Daughter To Go Gluten Free W/no Diagnosis?

[HappyMom623]

Hey everyone.

 

First, I have Celiac. I've known since 2012. When my daughter got to the age when she could start eating, she started eating a decent amount of gluten. She has always has issues with her poops, even before she ate solids. They suspected a diary intolerance and put her on soy formula when she was a few weeks old. When we transitioned to whole milk she seemed to get a rash on her face, and was blowing out 3 or more diapers a day so we stopped milk, and went to coconut milk.

 

In the beginning of starting coconut milk, her poo's (sorry...) calmed down. I started giving her gluten-free snacks here and there, but she still had some gluten. She seemed to start sleeping better (but she's also been teething, and going through a leap..so  not sure if it's related). I've noticed when she does eat gluten things, her diapers look weird and have a really bad smell to them. With me having it, I know her chances are much higher.

 

I've been moving her towards all gluten free foods, but wondering if this is a bad idea? I want her to be healthy, and not feed her things that are potentially hurting her. What age do they are start testing for this? I know when they are little the results can be here or there.

 

I guess what I'm asking is OTHER than for testing reason, is there a reason I should not give her gluten-free foods?  Right now I'd call her gluten lite. She might have one thing a day with gluten.

 

Just so nervous about her having it. I lived until I was in my mid- twenties and didn't know and have all kinds of AI stuff now. Just want the best for her!

 

 

[StephanieL]

You should have her tested. Yes.  There is a chance she may test negative now but you should have her tested before removing gluten, absolutely. Why? Because if she's positive you need to know it's a life long, gluten free life. You will need a diagnosis if you need accommodations when she is in school.  For any future medications or hospitalizations, you need to know. If you don't test her now and want to test later, there is the hassle of a gluten trial which can be really hard if there are issues to force a kid to eat something that makes them feel like crap for a minimum of 6-12 weeks.  

[HappyMom623]

How do they do it for kids? The scope? I was not diagnosed that way. My blood results were extremely high and with all my symptoms my doc just diagnosed with that way. I asked him about doing the endoscopy and he said that it was pretty invasive and I should go ahead and go gluten free. I did so, and I felt world's better. I have no doubt that I have it. I know it's different for me as I found out as an adult and didn't have to worry about school and such. I've brought it up to the Ped that I have celiac and that I worry about her but they don't really say much. Should I seek out a better type of doctor?

 

I just don't know if I want to put her through it at such a young age (14 months) if the results could be yes or no. She's not in school yet, and I take her food to daycare. Are the scopes definitive?

[HappyMom623]

and we have not completely removed gluten, we've just drastically cut down on it, so at this point, I can't imagine we'd need to go through a whole reintroduction to gluten. She's still eating pasta, and crackers, just a small amount each day. I obviously have no idea if she has it, and other than the diaper issues, she doesn't really act like anything is bothering her. She was constipated long before she was eating solids, but then again who knows if formula have gluten in it? (ugh).

 

I don't want to take things away from her if it's not necessary, and sometimes I think I project my Celiac on her accidently. It's fine line.

 

Is it a general rule that anyone that Celiac that has children has their child tested??

[cyclinglady]

Yes, all first-degree relatives should be tested. That means your parents, siblings and your daughter. My daughter is 14 and she has been tested (celiac blood panel) even though she was symptom free. My doc also checked her for anemia since that was my main symptom. Our house is gluten-free since hubby and I both are gluten free and it is easier. My daughter gets a daily gluten fix at school. During the summer she is pretty gluten light. I will beef up her gluten intake a few months befor her next test. She will get re-tested ever two to three years -- sooner if she develops symptoms.

If your daughter is in daycare, this is the best time to test her. She needs the the complete blood panel as kids do not test out the same as adults. I do not think yiu need to worry about an endoscopy at this point. This is the blood panel:

-Tissue Transglutaminase (tTG) IgA and (tTG) IgG

-Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

I can tell you that my husband went gluten-free per the poor advice from my allergist and his GP. It worked! But he will be the first to tell you that I am taken more seriously from family and friends and even medical! But, he refuses to do a gluten challenge. Three months of gluten would really make him sick. That is why testing is so important before you eliminate gluten. Going back on it can make you really miserable!

If possible, find a Ped GI who deals with celiac if your regular Ped will not do e entire panel.

Good luck!

[nvsmom]

I would do the tests too, but you may need to up her gluten intake. I imagine for a young child it would be about a slice of bread per day, or equivalent, for a month or two..

 

If she continues to eat gluten, you'll need to retest her every couple of years or as soon as symptoms appear.  Celiac can show up at any stage of life.

 

And going gluten-free without a diagnosis is fine.  Proactive.  My three boys are all strictly gluten-free even though I tested them (just the tTG IgA) and they had negative results.  They had too many symptoms for me to ignore and chance.  They are now healthier so I think I did the right thing.

[GDLions]

I have two boys with Celiac ages 6 and 8, diagnosed with endoscopy at 3 and 5.  Do the blood test and if it comes back positive do the scope to get a formal diagnosis. Don't stop gluten without a blood test.

 

Knowing all the problems we are dealing with trying to get the school district to cooperate, if we didn't have a medically diagnosed condition they wouldn't be legally required to comply with their medically required needs.  Don't go gluten-free without the test, I debated over getting the scope for months, both boys had EXTREMELY high values so I figured what's the point.  Now I know.  Also, if we only had the blood test our health insurance would deny some of the test that are required as the boys age.   

 

When the first's blood test came back positive it was standard protocol to test the whole family.  That's when we found out about myself and our other son.