WWYD?

kcisthebombdotcom · January 2013

About 4 months ago my DD came down with a number of stomach issues. Constipation, pellet-like poop, bloating, horrible gas pains that resulted in screaming fits, no appetite. I took her to the pedi and she suggested starting her on a regime of miralax. Finally it dawned on me that she may have celiac disease. I have it as well as many of my uncles/aunts/grandfather. I started her on a gluten free diet and she's doing well. Her appetite has returned, all her other stomach issues have resolved, and as an added bonus her language has greatly improved/sensory issues have reduced.

My pedi is pushing us to do celiac testing. Her reasoning is that it's medically relevant since we suspect she has some underlying neurological disorder and there's a connection with that and celiac.

I am resistant to get her tested for a number of reasons. Celiac testing in children (especially under three) leads to a lot of false negative results. To accurately test her, I would have to do a gluten challenge and reintroduce gluten for 8 weeks. It seems like a lot of suffering for her and since the results are very unreliable we may put her through hell for nothing. I also feel like no matter what we're going to keep doing what we're doing.

WWYD?

CaptainSerious · January 2013

If what you are doing is working, why change it? If she has a gluten intolerance, you are treating it the best way, by avoiding gluten. If not, there's no harm done, and she's feeling better. You can wait until she's older to do the testing and find out if the gluten is the whole problem or just a part, but for now, you've solved her issues so don't stress it.

kcisthebombdotcom · January 2013

-auntie-:
I'd do the testing. Especially given that it might bring clarity to other congenital or neurological conditions.

It's possible the improvement in symptoms could be a result of cleaning out chronic constiptation/impaction and speech therapy. Most people with celiac report odd-colored, loose stools not constipation and hard stools.

The gluten-free diet can be challenging and limiting for kids once they're out in the real world. I wouldn't want to put the onus of it on any child for no good reason.

There's no such thing as "most people with celiac". If you know one person with celiac, you know one person with celiac. Loose stools are equally as common as constipation in those who suffer from celiac. Those suffering from loose stools are just more likely to get diagnosed since loose stools have a greater impact on your life than constipation. 97% of those who have celiac are undiagnosed likely due to the fact they're not looking to celiac since they don't have stomach issues. 8 people in my family got tested for celiac after a family member was diagnosed. 5 had the disease. Only two were symptomatic--and the symptom wasn't loose stool.

I'm not planning on never getting her tested--I'm just contemplating delaying testing until the results can be more accurate.

MaxandRuby · January 2013

I think you are looking at 6 of one half dozen of the other. I have Celiac's (technically DH) and the first thing I thought of when you listed her gastro symptoms was Celiacs and given the strong family history of it (since it is hereditary) plus the improvement since going GF....well....I think you can wait or go for it. Face it. WHEN she gets tested (since you elude to potentially testing when she is older) she is going to have discomfort at some point.

Would you mind PM'ing me some of your favorite recipes or favorite GF cookbook. While I have DH and should be GF I admit that I'm not. Once I find something GF I like, then I go GF for that item (ex: I finally found a GF noodle that I like so anything with noodles is made GF now).

kcisthebombdotcom · January 2013

MaxandRuby:
I think you are looking at 6 of one half dozen of the other. I have Celiac's (technically DH) and the first thing I thought of when you listed her gastro symptoms was Celiacs and given the strong family history of it (since it is hereditary) plus the improvement since going GF....well....I think you can wait or go for it. Face it. WHEN she gets tested (since you elude to potentially testing when she is older) she is going to have discomfort at some point.
Would you mind PM'ing me some of your favorite recipes or favorite GF cookbook. While I have DH and should be GF I admit that I'm not. Once I find something GF I like, then I go GF for that item (ex: I finally found a GF noodle that I like so anything with noodles is made GF now).

If I remember correctly I think it was age 5 when the tests got more reliable. I went to see a GI doctor for my son at 12 months when he was an infant due to reflux and asked about testing. The GI said since he was asymptomatic we shouldnt test but should around some age since kids don't always present with typical symptoms--I want to say 5. I know under 3 is notoriously unreliable. She will have some discomfort when we eventually due a gluten challenge--but at least at 5 she will have a greater understanding and tell me what's wrong so I can treat the symptoms than at 2.

To answer your question--I can't say I follow any cookbooks. I mostly make my own stuff--I'm a meat/veggie/starch in the form of rice/potato kinda girl. I mostly marinade meat on my own with extra virgin olive oil and fresh herbs (my fav is rosemary). I cook a lot with various types of peppers and onions as well. Whatever sounds good in the moment I throw in the pan. lol.

I've recently made the milano cookies for a party off this site and it came out great:

https://glutenfreeonashoestring.com/category/recipe-index/best-of/

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