Possibly Celiac 13 Month Old

[Sybil]

Hello, everyone!

My son is 13 months old, and was put on a gluten-free diet by our family doctor 4 days ago. He was in for a routine well-baby, and I mentioned that he wasn't tolerating something in his diet very well. It was advised I put him on a gluten-free diet immediately. What I thought was just a delightfully chubbsy stomach was actually a distended stomach. He hasn't gained weight since he had pneumonia two months ago, and he was hardly at his fighting weight then. He was showing signs of malabsorption, and has been suffering from chronic angular chelitis for months.

We've had wonderful results in the last 4 days. His stomach is flatter, his mouth is clearing up, and wonder of all wonders, he's stopped having caustic, nose-searing, offensive, liquid poops several times a day. He also doesn't wander around crying all evening after dinner, and he's nursing more than he has in months. (Thankfully, I am already gluten-free for IBS-related reasons.)

I called my doctor today to ask if she wanted to do any further testing, since he's showing rather a lot of improvement with dietary change.

So now, my understanding is that Ontario doesn't cover the blood tests to diagnose celiac disorder. I'm feeling rather at a loss. While I will pay out of pocket (and I'm rather incensed about the fact that I have to, as every other province seems to cover this), I don't have the spare money on hand at the moment. By the time I do, he will have been gluten-free for over two weeks, and it seems that I would have to reintroduce gluten into his diet for a month before I could have him tested. As a parent, this does not sit comfortably with me. My doctor has said we'll discuss our options when she seems him again at the end of August, but I am not sure as to what those options could reasonably entail.

Celiac disorder could well be the magic bullet we've been searching for since he was 6 days old, and was hospitalized with sepsis stemming from a couple of massive infections. A very knowledgeable pediatrician handled his care, and she said she was willing to bet money he had an autoimmune disorder of some sort, as her experience suggested newborns rarely present with the sort of infections he had without an underlying autoimmune issue.

Overall, I'm not massively concerned about having an Official Diagnosis for him. Whatever. I don't feed the kid gluten, he doesn't get sick. I don't need a name for that. I do have some concerns that if he is hospitalized again, his dietary needs will be disregarded without a diagnosis, or that without a diagnosis, it will constantly be a fight with all the institutions he will deal with in his life (school being a notable one) to accommodate his dietary requirements.

But generally, at this moment in time, I'm feeling rather over my head and utterly out of my depth. I don't know what I am supposed to advocate for on his behalf, let alone how to go about it. I'm simply interested in seeing my son grow up healthy.

So, with that rather longwinded and cumbersome introduction out of the way, it's lovely to meet you all. Any advice or suggestions are definitely welcome!

Take care.

[tarnalberry]

I don't have a lot of meaningful words, but as tests results in kids under 2 are notoriously unreliable, even if he did go back on gluten, he could easily get a false negative. I'd be considering leaving him gluten free for a few years (and if you're nursing, you should be gluten free as well as long as you do) and re-evaluating if you want to put him on gluten for a few months for a retest.

[Cara in Boston]

I think it was irresponsible of your doctor to suggest the diet before at least trying the tests. If he has been sick for this long, there is probably some damage that would show up in a biopsy.

I am wondering if YOU were properly tested. IBS is a frequent, incorrect diagnosis for people with celiac disease. It is genetic.

Many doctors differ on how long you need to eat gluten to be properly tested. Mine said 4-6 MONTHS at a minimum. If you just started the diet, you may not need to go that long. I would have him resume a normal diet while you try to find out if further tested can be scheduled quickly. It is hard to feed your child something you know is harmful. It took us 4 months to get our diagnosis, but I feel it will help in the long-term (with school, camp, university, etc.)

Cara

[rachelh4207]

I have a 3 year old who was 2 during all the celiac stuff and here is her story:

I don't recommend doing the tests. We paid a ton of money and end the end, the pediatric GI said that there was no need for a gluten free diet because the endo (which is NOT reliable at these ages) was negative.....Funny that he told me that since my daughter is THRIVING now.....SOOOO glad I didn't listen. I have a gluten issue to and do not plan to be tested (don't want to do the challenge)

Also, I am pregnant and talked to my doctor and said that I knew gluten made me sick and was worried about the hospital stay with birth and He said he can just order me a gluten free diet. No big deal. No "official" diagnosis needed.