Toddler With Celiac?

[Dave-KC]

I am the father of a 13 month old daughter who had a test result come back with blood work that may indicate celiac. All we were told (over the phone) is that she had an abnormal gliadin report, and we go to see the pediatric gastroenterologist in about a month (soonest we could get her in).

Any thoughts on what we should look for and be prepared to ask? This is a very new world to me, and I'm not sure ow to handle it.

Thanks.

[anna34]

Welcome to the board.

First, if your daughter does have celiac disease it is good that you are finding out at such a young age. Her overall health and well-being will be that much better for it whether she currently has symptoms or not. One of the best things about celiac disease is that the solution is dietary.

Be prepared that if the doctor suspects celiac based on the blood test, that he/she will likely recommend a biopsy to confirm the diagnosis. For our daughter, this was done in a hospital, under anesthetic, and only takes a few minutes. Also, know that if she is confirmed to have celiac, then first-degree relatives should be tested for it as well.

In the meantime, one of the best things you can do is read about celiac disease and the gluten-free diet to familiarize yourself before the G.I. appointment.

This board is a great place to get information and ask questions. It has been an incredible source of support for us since our daughter was diagnosed in February.

[Notso]

I just wanted to say hello. Our daughter was diagnosed at the same age. We decided not to do the biopsy since we have a strong family history of celiac, and I was uncomfortable putting her under for the procedure. Since you are totally unfamiliar with the diet, I would ask for your GI to refer you to a nutritionalist. The web and your GI should be able to help you a lot with diet ideas, but I can tell you some of the struggles we've had. Our daughter was crawling for the first three months of her disease. This was an issue because she kept being contaminated by crumbs on the floor. We solved this by making our whole house gluten-free (since vacuuming after every meal was killing me). We also had to be sure no gluten was served when she had playdates. Now that she is walking this isn't as much of an issue. I was very overwhelmed at first because most of the info I found was for older kids, not babies who still stuck everything in their mouth.

Also, here is a list of gluten-free baby snacks we have LOVED:

Baby Mum Mums

Happy Baby Puffs (some are gluten-free, you can get them on amazon)

Gerber dried fruits

Veggie Booty

Happy Baby yogurt melts

Good luck!!!!

[Notso]

One more thing... There are major pluses to being diagnosed so young. Harper was a new kid after a week or so on the diet. She went from a crying, constantly unhappy kid to the happiest spunkiest little thing ever. Plus, they'll have no memory of gluten foods.

[Dave-KC]

Thanks for the input, we really appreciate it.

It's a little weird that my wife and I don't know anyone in either family that has celiac. But that doesn't mean she doesn't have it. I've read that it's recommended that the other three in our family be tested, and I'm sure we'll follow through (especially the four year old).

No question keeping the little one away from gluten will be a challenge. She's a food clepto right now, stealing anything she can get her hands on, and right into the mouth. But that will slow some in the future too.

I did stop by the grocery store with the girls this evening, and checked the gluten free aisle. Hy-Vee in KC has a very good organic and health food section, and they had a full aisle dedicated to specifically gluten free products. That was encouraging (although the prices weren't). At least we've got somewhere to start on the gluten free foods if we need to.

Thanks so much for your input. The appointment with the pediatric gastroenterologist isn't until early September, so it'll be a little bit before we know.

[kareng]

Thanks for the input, we really appreciate it.

It's a little weird that my wife and I don't know anyone in either family that has celiac. But that doesn't mean she doesn't have it. I've read that it's recommended that the other three in our family be tested, and I'm sure we'll follow through (especially the four year old).

No question keeping the little one away from gluten will be a challenge. She's a food clepto right now, stealing anything she can get her hands on, and right into the mouth. But that will slow some in the future too.

I did stop by the grocery store with the girls this evening, and checked the gluten free aisle. Hy-Vee in KC has a very good organic and health food section, and they had a full aisle dedicated to specifically gluten free products. That was encouraging (although the prices weren't). At least we've got somewhere to start on the gluten free foods if we need to.

Thanks so much for your input. The appointment with the pediatric gastroenterologist isn't until early September, so it'll be a little bit before we know.

Not sure where you live, but the HyVee on 135 th & Antioch has a huge amount of gluten-free I've heard the one inLenexa and the one in Olathe on Ridge View have a big selection. The one on State Line & 123 and the one in PV are not as big but still good.

You will find things that are naturally gluten-free & cheaper - like a lot of fruit snacks. We like Welch's.

I live in the southern OP area if I can help. message

me if you want.

[Dave-KC]

Not sure where you live, but the HyVee on 135 th & Antioch has a huge amount of gluten-free I've heard the one inLenexa and the one in Olathe on Ridge View have a big selection. The one on State Line & 123 and the one in PV are not as big but still good.

You will find things that are naturally gluten-free & cheaper - like a lot of fruit snacks. We like Welch's.

I live in the southern OP area if I can help. message

me if you want.

Thanks kareng... we're up near Claycomo, so I was visiting the new Liberty Hy-Vee. I've heard that some of the Hy-Vee's have especially big sections. The Liberty store is less than a year old, and does have a pretty good section, but of course, I have no way to compare...

We'll be interested in suggestions, especially once we get a firm diagnosis.

[kareng]

Thanks kareng... we're up near Claycomo, so I was visiting the new Liberty Hy-Vee. I've heard that some of the Hy-Vee's have especially big sections. The Liberty store is less than a year old, and does have a pretty good section, but of course, I have no way to compare...

We'll be interested in suggestions, especially once we get a firm diagnosis.

May become your new Sunday afternoon family activity. Drive to different parts of the area. See the HyVee, and Bass Pro shop.

See the HyVees & Whole Foods and Deanna Rose farm Park.

[Dave-KC]

May become your new Sunday afternoon family activity. Drive to different parts of the area. See the HyVee, and Bass Pro shop.

See the HyVees & Whole Foods and Deanna Rose farm Park.

Could be we'll have to make those trips. I'm familiar with the Whole Foods (at least the location) on Metcalf around 93rd, and we've been to Deanna Rose a couple of times, as it's lots of fun for the girls. But if we need, we'll make the occasional trip. I've also discovered that (Company Name Removed - They Spammed This Forum and are Banned) has a fair amount of gluten free products on their sites, but of course, you don't just go out and buy that.

Right now, I'm just doing some research to be prepared for the possible diagnosis. That way, if we need to go gluten free, we're better prepared.

[nmlove]

When our son first saw his ped GI doc, we went over symptoms and he had another set of labs drawn as well as the endoscopy. We chose to do the endo because we have no family history of celiac disease or really, autoimmune disease. Plus, as the doc said, sometimes the endo can show something else that may hinder healing (luckily, not our situation). With the bloodwork results, the doc told us to take our son off of major gluten foods (i.e., pizza, pasta, cookies, etc.) as he almost certainly had celiac. Then he had the endo which I think is truly more scary for the parents than the child. In less than 10 minutes from them going into the operating room, the doc was back out, saying it looked like celiac but that biopsy would confirm. It did and we went as gluten-free as we knew how at the time. I looked online for resources and we also had to see a pediatric nutrionist (this was all done through our Children's hospital). The rest of us were tested and his little brother (2 at the time) came back positive. We declined the endo on him and both have been gluten-free nearly two years. And both responded very quickly to the diet. Now we see their GI doc twice a year for check-ups every 6 months to see how they are growing, how they feel and to do bloodwork.

For easing into the gluten-free diet and being easier on the wallet, my suggestion to you would be to go back to basics. Keep it simple with rice and potatoes as your starch (quinoa too if you like that), vegetables and fruit, meat, dairy, etc. Prepare your own foods. Pick one or two of your daughter's favorite gluten foods and work on finding what works for you gluten-free (for us that was pancakes and pizza). Once you have those mastered, move on to something else. gluten-free food can be a weird/different taste at first and your daughter may refuse it initially because of that. Also, if you don't want to make your entire household gluten-free, keep food at the table so that you only have to clean up a small area. Have the older ones (and you) wash your hands after eating to prevent toys being contaminated that she'll put in her mouth.

It's overwhelming at first but it quickly becomes just another way of life. Best of luck!

[Dave-KC]

Thanks for the input nmlove. One plus is our daughter is so young that she hasn't been on regular foods much at all, we're in the process of transitioning her from baby foods to regular foods, so if she does have to go gluten free, then hopefully she'll never have that much of a taste for gluten type products. Here's hoping, anyway!

BTW, she had protein intolerance to milk and soy as a baby. We were just starting to try her again on milk when she had an 8 day bought of diarrhea, which is why the blood test occurred that started us down this road. I'm not sure if there's a connection or not, but it may be another question for the pediatric GI doc.

[nmlove]

BTW, she had protein intolerance to milk and soy as a baby. We were just starting to try her again on milk when she had an 8 day bought of diarrhea, which is why the blood test occurred that started us down this road. I'm not sure if there's a connection or not, but it may be another question for the pediatric GI doc.

Interesting. It could be the celiac caused gut problems leading to the dairy/soy issue. Or it could be separate. Funnily enough, my youngest had a milk intolerance as well. She is now 2 and seems to handle it ok (we just started trying her again on it). But she's my one without celiac - so far anyway (she is genetically predisposed, we had her tested). Best of luck! Hope you have a good GI doc.

[Dave-KC]

Well, we had our appointment yesterday with Dr. Seth Septer at Children's Mercy in KC. He was excellent, listened to us, asked lots of questions probing our daughter and her condition.

Her blood tests included three things, and my apologies for not remembering all of the test names. She was abnormal on one, and normal on two. The one she was abnormal on the Doctor said is the one that gives the most false positives. That and combined with her normal growth pattern, and lack of symptoms after the 8 day bought of diarrhea (and it's been 1 1/2 months since that bout) leads him to believe she does not have celiac. He said it's 90% likelihood that she doesn't have celiac.

Going forward, he wants us to watch for symptoms (diarrhea, vomiting), and then do her blood work again when she's two (she's 15 months now). And unless other symptoms or the blood work show a problem, we assume she doesn't have it.

Also, he thinks that likely the 8 day bought was a virus.

We were very, very impressed with Dr. Septer, and would definitely recommend him for anyone in western Missouri or Kansas that needs a pediatric GI doctor.

Another good thing is that because he thinks the 8 day diarrhea was a virus, he would like us to reintroduce milk, and see how she handles it. He thinks that most likely she has outgrown the milk issues she had as a baby. Part of this is because our little girl is a clepto when it comes to her sisters food, including cheese crackers and cups of milk... so she's had milk in her system.

So, we're grateful that it looks like she doesn't have celiac (and we do not have relatives that we know of with celiac), but we also have a plan going forward to keep an eye just in case we got false negatives on the other two tests.

[carecare]

Do you know what celiac blood test you had done? Did you have a print out for yourself? I had never heard of false positives on the blood test...or if there was it was extremely rare. Did you have the deamidated gliadin IgG and IgA? I'm just curious. My son had a positive deamidated IgG...but the other two markers were negative. I decided to take him off of gluten right away...and in 2 1/2 wks the muscle pain he had for a year went away. The mouth sores he had were gone in 2 days.

Good luck with the dairy challenge!

[Dave-KC]

Do you know what celiac blood test you had done? Did you have a print out for yourself? I had never heard of false positives on the blood test...or if there was it was extremely rare. Did you have the deamidated gliadin IgG and IgA? I'm just curious. My son had a positive deamidated IgG...but the other two markers were negative. I decided to take him off of gluten right away...and in 2 1/2 wks the muscle pain he had for a year went away. The mouth sores he had were gone in 2 days.

Good luck with the dairy challenge!

There were three tests done, but I don't have a copy, although he showed me the lab report. So, sadly, I don't know which ones were which. But he said two of the tests, the ones my little girl was negative on are the ones that if they're positive, they are likely to have celiac. The test that was positive is one that's been done longer, likely the first test that was available.

But also my daughter is largely asymptomatic. Of course, she's 15 months, which is pretty young, but she had one 8 day bought of diarrhea, but nothing significant since, and that was almost two months ago. She is gaining weight right with the percentile she's always been in, and has not had diarrhea or vomiting since. She also appears to not be having abdominal pain.

Now don't get me wrong, we're not 100% out of the woods on this, as it is possible that she may in fact have celiac, but he thinks it's unlikely. Thus, watching for the symptoms, and doing blood work again in 9 months.

The doctor said it was the Gliadin that was a problem, but I didn't look close enough to know which one. I do know that the big tests these days rarely have false positives, but she was negative on those is what I understand.

Sorry I don't know the names of the tests... I probably could have gotten a print out of the test results, but just didn't think about it.

[StephanieL]

I would try and get a copy of the report.

My DS was asymptomatic. He went to an endo because we found out he had a ZERO Vit. D level so the endo did the Celiac test. Well, here we are a lot of blood tests and biopsy later.

I am not saying this to scare you or make you doubt your Dr. I am just saying that kids may often be asymptomatic but still have it.

[Dave-KC]

I appreciate what you are saying StephanieL.

I'm not too worried about these immediate ones because we will test again in nine months. And the Doctor did not rule celiac out completely. He felt it was unlikely. Also, he gave us symptoms to look for, so we're happy at this point with where we're at.

That said, I can ask for the results from our regular pediatrician, as he is the one who initially ordered the tests, and then handed the results to the pediatric GI doctor. We will see him on a regular visit fairly soon.

[love2travel]

Dave, this is off the topic but I must comment - assuming that photo is of your daughter she is absolutely DARLING!

[Dave-KC]

Dave, this is off the topic but I must comment - assuming that photo is of your daughter she is absolutely DARLING!

It is a photo of my daughter (the one tested), and yes, I think she is too! And I think her older sister is beautiful too. Of course, I'm a very biased dad!

[love2travel]

It is a photo of my daughter (the one tested), and yes, I think she is too! And I think her older sister is beautiful too. Of course, I'm a very biased dad!

That is awesome. Lucky little girls!