Celiac Symptoms In 1 1/2 Year Old?

[suzischepers]

When I was 17 (now I'm 25), I was tested for Celiac Disease. Everything came back negative except for a positive gene marker. The doctor gave me the results and told me to make of it what I wanted. When I went to my primary doctor later, he also told me that he wouldn't talk about Celiac Disease (I'm assuming he didn't know much about it). Since I only get GI symptoms every couple months, I have not been on a diet. When I have tried the diet to see if I would feel better from the non-GI sypmtoms (fatigue, etc), I didn't notice enough, if any of a difference to stay on it. 

 

Now I have a 3 1/2 and 1 1/2 year old daughter. My 1 1/2 year old has always been a happy, easy to please, love to eat baby. She started walking at 9 months and has been BUSY ever since. But the past couple of months, she has become very irritable and has had a lot of GI symptoms. She is usually really bloated and alternates between being REALLY constipated and having diahrrea. She would get so constipated that she would cry out in pain and move all around in agony as she tried pushing. She often didn't poop until hours later, usually during her nap. After this started happening more frequently, I started her on a daily probiotic, decreased her milk intake, and increased her water intake. She still seems to struggle a little bit, but it's not nearly as severe and is usually diarrhea. She poops so much now that her butt is really rashy & blistery, making her even more miserable. 

 

She's always had sensitive skin but that has also worsened in the past month. She started getting red rashes (my mom is a nurse and thinks it's Eczema) on her arms, legs, and back. It was never too severe and would go away. This past week, she has been breaking out all over...on the inside of her elbows, her legs, arms, face, and I think some on her butt (some of it is diaper rash but some of it looks like the rest of her rash). Some of the rash goes away but some spots stay and are red, raised, and almost blistery. 

 

The other bigger thing that we've noticed is that she has grown very little since she was 9 months old. She was in the 50+% for height and weight since she was born and then started slowly dropping. Now she has only grown 1 inch since 9 months old (she is now 17 months old). The doctor wants her to come in for a height check in a month but didn't indicate if I should worry or not. He didn't mention being worried about her weight b/c she's gained a little, but she's still close to the 5% for height and weight now. She's small enough that people are shocked to see that she's walking. 

 

A couple other things I've noticed is that she turns down food more often. She acts hungry and wants food but will push it away when I give it to her. She also is more clingy & wants to sit on my lap a lot more (she was SO busy before, that she didn't sit still very often). She pulls on her ears a lot too, but when her ears were checked they looked fine. Overall, she just acts irritable and uncomfortable a lot. 

 

My daughter's doctor said he would do a blood test for allergies (immuno cap) but he is the same doctor that didn't want to talk to me about Celiac and so I don't dare ask him what he thinks about her having it. Most people think I'm crazy and that she's just going to be short, no big deal. 

 

I am wondering if anyone has experience with their toddler and Celiac Disease or with the Immuno Cap blood test. I know Celiac is different than a wheat allergy, but would it still show positive for a wheat allergy on the blood test, or not necessarily? Do her symptoms sound like enough, that I should have her tested for Celiac Disease or put her on a gluten free diet? Or does it sound normal for any food allergy and I'm just worrying too much that it's Celiac b/c of my possible dx? How long does it take to see improvement with the diet if she did have Celiac? I've been gradually taking as much gluten out of her diet as I can but am not sure when/if I should put her on a full gluten free diet. My biggest problem is that I forget to check something and even if I think she's gluten free, I realize later that she did have gluten after all. (One of the biggest reasons it was so hard for me to stay on the diet :-/ ) 

 

Any thoughts, input, experiences would be really helpful! 

[psawyer]

To quickly address one question. You can be allergic to wheat. You can have celiac disease. Those conditions are independent. You can have neither, one of them, or both of them. The wheat allergy is a bit easier to deal with since wheat is a "top eight" allergen and must be clearly disclosed on labels.

[tarnalberry]

You can dare talk to your daughters doctor about it. You are the only one who can speak up for her, and if your current doc won't take your concerns seriously, he/she should be fired and replaced .

[nvsmom]

Yes, you should request celiac tests for your daughter. She has fairly classic symptoms, some of what you described sounds like what I was like as a toddler... only she sounds more extreme and I am a celiac.

 

The deaminated gliadin peptides (DGP) tests are supposed to be very good for detecting celiac disease in young children. This is a run down of the tests to request:

 

• DGP IgA and DGP IgG
• tTG IgA and tTG IgG
• EMA IgA (this one shows up after there has been a lot of damage to the villi and is sometimes absent in celiac toddlers who are new to the disease)
• total serum IgA
• AGA IgA and AGA IgG (these anti-gliadin tests are older and a bit less accurate)

She'll need to be eating gluten in the weeks prior to testing for them to be accurate.

 

If she has negative tests, she could have NCGI (non-celiac gluten intolerance) which has all of the same nasty symptoms but none of the villi damage. The blood tests are in response to villi damage so they will all be negative.  The only way to test for NCGI is to try going gluten-free for a few months and look for improvements.

 

I mention NCGI because 2 of my 3 kids had some symptoms of celiac disease, I had them tested but their tests were negative. I made them gluten-free regardless and they have had improved health... and they all had a growth spurt within a couple of months. It might be something to keep in mind.

 

... And you should probably be tested again too, Mom.  The kids need a healthy mom.    Best wishes.

[mushroom]

Every doctor should know that failure to thrive is one of the classic symptoms of celiac -- as a matter of fact, it is the only symptom that a lot of them have ever learned about if they haven't been near med school in 30 years.  Yes, demand that she be tested, change docs if he won't.  This is an important growing time.

[suzischepers]

Thanks for the responses. I am going to be making some calls today to see what I can do as far as getting her tested. 

[mommida]

Since the age of your child is in the bracket of notorious false negatives, you should opt for a ped. gastro.