Retesting 5 Year Old?

[Mom-of-Two]

Myself and my 9 year old both have celiac. My 5 year old has tested normal with tTG test twice, and has a normal EMA screen several months ago. NOT a full panel. He continues with constipation and frequent tummy aches, but the pediatric GI we see feels this is just more diet and behavioral. (Holding it)

Should I push for more tests- the DGP tests on him? If so, how long do I need to up his intake to get accurate results? We are gluten free at home but he does eat gluten when we go places. He has MiniWheats a few times a week (paper bowl and disposable spoon per his doc to increase fiber. So he gets pretty regular amounts of gluten but not daily pieces of bread. BUT I want accurate results so I can quit this constant wondering.

What do you suggest I do next?

[nvsmom]

If you do more tests, the DGP tests are good ones for kids. If he still tests positive, you might want to consider making him gluten-free anyways. Non-celiac gluten sensitivity (NCGS) is much more common than celiac disease and he will have all the same types of symptoms but without the villi damage (so a negative tTG, DGP, and EMA tests).

Good luck.

[Mom-of-Two]

We have no problem making him fully gluten-free (he eats none at home anyway), we just want to make sure he doesn't have actual celiac- so we know if we have the same contamination concerns.

I'm going to follow up, if this continues with the constipation/tummy aches I may wait a few months, since he will be eating gluten snacks in Kindergarten starting in the fall, he may be easier to test. I still negative, I suppose I'll give my suspicious mind a rest

[Mom-of-Two]

Well, we are seeing his pediatrician tomorrow, but GI can't see him until Oct 7. Tomorrow his pediatrician is suggesting a tummy X-ray because she suspects he has impaction, he is also being iron tested because he won't eat meat, and doesn't eat a lot of iron rich foods. I am now totally convinced he needs to be off gluten because he has joint pain in his wrists and has been complaining of headaches 2-3 times a week.

Going to see what the pediatrician will do for us tomorrow

[nvsmom]

Poor kid. i hope you get some conclusive results.

[Mom-of-Two]

So all.....his X-ray a week ago showed impacted stool, basically a colon full of stuck poop she had us do Miralax for 3 days, and then has us on a maintenance dose right now until we get him going more regularly. He's gone a total of 5 times since starting the Miralax, and seems to feel a lot of relief. She agreed that we should do a few more celiac labs, since he never had a full panel.

She ordered the DGP tests and a couple other things including iron, because he eats no meat. Thing is, trying to feed him a bit more gluten till we do the labs--- what would you suggest time and quantity wise for accurate testing? He DOES already eat it, so we are not starting a challenge from scratch, just upping what he eats now.

As an example, we don't have gluten in the house except a few things- he eats Honey Nut Cheerios and I have MiniWheats, his Cliff Bars are not really gluteny, but are made with regular oats, I bought some goldfish for snacks on the go, regular pretzels, he eats normally when out to eat, and will eat kindergarten snacks (which always have gluten!!) starting daily next week. I know bread is the best way to incorporate it, is it worth bringing bread back into my house with two celiacs? Should I get a box of mini donuts and let him eat a couple a day, that doesn't sound healthy I have some frozen macaroni and cheese he eats 1-2 times a week, I even bought some of those Kraff microwave ones for lunch, just trying to sneak it into him!

I get conflicting info. Both my pedi and GI said he is eating enough, he would have antibodies. My own GI told me nope, he could be testing negatively because he is eating gluten light.

What do y'all suggest?

[nvsmom]

I think you are probably fine. The recommendation for 2 slices of bread per day is for an adult; I'm guessing your little guy isn't even 50 lbs (about a quarter of an adult male's weight) so what he's doing is probably enough. If you are concerned add more gluten... it's funny how as celiacs we have finally learned that there really is no healthy way to add more gluten into your diet. LOL

 

Best wishes.

[Mom-of-Two]

Exactly!! I'm struggling with purposely feeding him crap to test him

Ok, I think I'll let him eat a bit more on a more regular basis, over next week or two, and go ahead with testing again- if this impaction issue continues, or he continues with tummy pain after getting negative labs, we may then consider eliminating gluten all together and see how he reacts.

My pedi is certain that he just has to get used to going regularly, and easily, hence the Miralax, but I don't want him to stay on it or depend on it to go, I really want to try more natural methods, if I could just get the stubborn kid to eat leafy greens and high fiber stuff!!

[nvsmom]

 

 

Exactly!! I'm struggling with purposely feeding him crap to test him 

 

LOL I think that's why we miss gluten containing foods so much at first, it's all the treats and comfort foods that we have to say good bye to.

 

Nuts are a good source of fibre. Coconut (real canned coconut milk especially) helps get things moving for me too.  

 

Dairy is another thing that can affect bathroom habits, perhaps consider removing it for a while.