Worth It To Test 3Yo?

[nicolebeth]

Celiac is in the family--DH's brother, sister, probably his father, and DS1 is presumed celiac (I've posted before...don't know how to link...he isn't growing yet, but feels MUCH better, and is 100% on board. Except for the not growing part...)

 

Anyway, my almost 3yo (DS2) has: eczema (like DS1 did, though definitely not as bad), GI issues (constipation, huge messes in diaper that seem connected to when he eats gluten, but we can't be sure), and was born big (9 1/2 lbs.), and while definitely growing, has been slowly dropping on the curve.

 

DS2 is definitely gluten-lite. We don't have it in the house (unless someone else brings something in, which is rare). He eats a gluten snack at school 2x/week, and may have oyster crackers 1x/week. There might be a bagel or a cookie 1x/week. But that's it. Is it worth it, considering family history to gluten him up to be tested? That also means I have to have gluten in the house--and have DS1 be jealous watching his brother (and sister) eating it (not to mention having separate butters, hummus, etc.) I will do that, however, if it seems necessary. We thought about just taking him gluten-free as a trial, and seeing if the diaper situation improves. (This was a kid who would sit on the toilet at 18 months, but by 20 months was so constipated that he refused.) Is it better to wait until he turns three to see where he is on the curve?

 

DD has been tested; she was negative for celiac and her growth is excellent. DH has been negative as well. (Both were tested while eating gluten.)

 

Thank you very much!

 

[mushroom]

It sounds like DS2 is being 'drip fed' gluten most days of the week, pretty consistently, so it may not require much more gluten to make testing worthwhile.  For your own peace of mind it is probably a good idea to know one way or the other and as he goes through the school system he is going to find a diagnosis very useful if gluten is causing his problems.  Even if he tests negative, I think I would trial him gluten free because of his symptoms and see if it makes a difference.

[nicolebeth]

It sounds like DS2 is being 'drip fed' gluten most days of the week, pretty consistently, so it may not require much more gluten to make testing worthwhile.  For your own peace of mind it is probably a good idea to know one way or the other and as he goes through the school system he is going to find a diagnosis very useful if gluten is causing his problems.  Even if he tests negative, I think I would trial him gluten free because of his symptoms and see if it makes a difference.

 

Thank you for your response.

 

Yes, we would like to know, if possible. (We couldn't know with DS1 because of low IgA & IgG.) Feeding gluten every day might be a pain, but is doable. (Does a 3yo really need three slices of bread/day for six weeks? Or is a few crackers a day enough?)

[mushroom]

A few crackers a day should be enough.

[nicolebeth]

A few crackers a day should be enough.

 

Thank you; that is helpful to know.

[mommida]

Yes testing would be a very good idea.  If some of the symptoms are caused by something like H. Ployri., it can be treated.  Or it can even be Celiac and Eosinophilic Esophagitus.  (That is my daughter's situation.  More cases are being diagnosed and now a connection between the 2 disorders is medically recognized.)

 

A doctor's note with proper diagnoses is important for school or other situations of putting your child under supervision of others.  (day camps)

[nicolebeth]

Yes testing would be a very good idea.  If some of the symptoms are caused by something like H. Ployri., it can be treated.  Or it can even be Celiac and Eosinophilic Esophagitus.  (That is my daughter's situation.  More cases are being diagnosed and now a connection between the 2 disorders is medically recognized.)

 

A doctor's note with proper diagnoses is important for school or other situations of putting your child under supervision of others.  (day camps)

 

Thank you for your response. We went through testing with DS1 that finally led to a GI who believes in non-celiac gluten intolerance. (We believe our son actually has celiac, due to the family history, but his blood work won't show it, and the scope he had three years ago wasn't comprehensive enough.) The school, fortunately, has accepted our word for it (and I do think they'd give us a note to that effect). We'd much rather have a diagnosis for him (and our youngest). DS2 had a gluten-laden pancake today...so, he's on the road to a bit of gluten a day so he can be tested when 3.

 

I hope your daughter has been feeling better with accurate diagnoses.

 

(H. Pylori is an interesting thought; I've sometimes wondered about that for myself, actually!)

[mommida]

There is a list of usual suspects that can cause the same symptoms.  Remember the younger the patient the more there seems to be a relation to added vommitting.

 

H. Ployri.

parasite infection

congenital defect (a teenage boy who posted a lot in his younger years and early diagnoses had surgery to correct the situation.  It's been years now and he is a busy college student now.  If I remember right celiac3270 had surgery when he was 14 years old?)

a hernia can cause vommitting after meals

eosinophilic gastrointestinal disorder

some of this testing is going to show inflamation and damage that may never have a cause pin pointed

 

It does get harder for me to remember the list when my daughter was still going through testing pre EE diagnoses.   I was an emotional wreck at the time too.

There are also medical conditions that have a connection to Celiac. 

 

My daughter is doing well.  We have identified "trigger" foods to avoid.  She has never been put on a feeding tube.  We also have identified seasonal allergy connection, so yes airborn allergens are an issue.  There is still no proven medications for treatment.  (If patients are having more severe symptoms steroids and Prevacid are used to help eleviate symptoms.)

 

I wish your family fast diagnoses and healing!

[nicolebeth]

Thank you to everyone who responded. We did get DS2 tested. He may have been "gluten-lite". Any results that stood out are below:

 

Total IgA: 21.6 (34-108) His brother is also low Total IgA.

 

Iron: 52 (65-175)

 

Vitamin D: 22 (33-100)

 

TSH: 3.993 (0.550-4.780) I know this is "normal", but if that were my TSH, I wouldn't be able to get off the couch, let alone leave the house. He has tons of energy, but perhaps it's different with kids?

 

MCH: 26.6 (27-34)

 

ABS Lymph: 3.47 (4-10.5)

 

ESR 19 (0-10)

 

To DH and I, we think this looks like celiac even more than our older son's blood tests. We are going to call our older son's GI doc, and see if we should at least have a doctor overseeing this. I'm sure that his pediatrician, if there is no other illness this looks like, won't feel comfortable saying even non-celiac gluten intolerance, and would prefer we see the GI. I posted these here since I know that everyone here is so knowledgeable, and has helped me so much with our older son (who, by the way, feels so much better gluten-free even if he hasn't really starting growing much yet).

 

(Oh, the tests that were negative: Gliadin Dem IgA and IgG (which I think are the DGP tests?), EMA, and TTG IgA and IgG.)

 

Thank you for any thoughts you might have on these--we appreciate it!

[mushroom]

Yes, I believe someone should be following blood work with results such as those.  He really needs iron and D supplements, his sed rate is elevated; and, of course his IgA tests were negative - don't know about the IgG.  Could be he is not getting enough gluten??  It's so hard to know how much a child needs or... if he is NCGI. 

 

I am glad your older son is feeling better.  I believe the growth will come.

[frieze]

what were his numbers?

[nicolebeth]

Yes, I believe someone should be following blood work with results such as those.  He really needs iron and D supplements, his sed rate is elevated; and, of course his IgA tests were negative - don't know about the IgG.  Could be he is not getting enough gluten??  It's so hard to know how much a child needs or... if he is NCGI. 

 

I am glad your older son is feeling better.  I believe the growth will come.

 

Thank you very much!

 

I have made him an appointment--not until May 15, unfortunately. We are pretty sure he should stop eating it, but perhaps I can speak to someone at the office before doing so. 

 

My older son also has low IgG; I suppose it's possible that DS2 has low IgG as well. (That would also affect the IgG test result, right?)

 

Thanks again!

[nicolebeth]

what were his numbers?

 

EMA-negative

Gliadin DEM IgA <10 (<20) (negative)

Gladin DEM IgG <10 (<20) (negative)

TTG IgA AB <1.2 (<4.0) (negative)

TTG IgG AB 1.2 (<6.0) (negative)

 

The rest are above.

 

Thank you.

[nicolebeth]

Update: just saw the GI doc today. The plus: he strongly believes in NCGI. On the other hand, it's difficult since the doctor is so sure there's no way my son has celiac. He doesn't think the Vitamin D being low means anything in NE after winter (my son's Vitamin D was higher the last time it was checked). He doesn't think the iron is too low. He's not concerned about the sed rate. He doesn't think the IgA is that deficient to affect the IgA testing that much. My son is very constipated, and I agreed to Miralax in the short-term, which is what we did with our other son as well. The doc supports our taking him gluten-free, but it's frustrating that he's so sure it isn't celiac (despite the family history, etc.) My question, that can't really be answered by anyone, is what caused my kids to have such severe constipation in the first place if not from gluten. Especially, again, given the family history.

 

I guess for us, the result is the same--gluten-free, after an annoying few month period of Miralax (which I'm sure will be much more annoying in a kid wearing a diaper--though, I can't imagine it being much worse than the diapers we're already dealing with--huge, mushy messes). DS1 had normally formed stool for the first time after going gluten-free, so there is hope!

 

Thanks again.