Celiac Or Overly Concerned Mommy?

[bluestar-127]

Hello!

I'm looking for advice. My son was diagnosed with "failure to thrive"... is that even a diagnosis? My son was a good size baby at birth at almost 9 pounds. He weighed 18.5 pounds at 6 months old, 18 pounds at 12 months and now he is 16 months and still only 18 pounds. He has grown very little height wise too. My family Dr. ordered a blood test to see if he has a genetic marker (or so to my understanding) for Celiac Disease. I got the "We'll call you" spiel and now it's been just over one week since he gave his blood. How long do results usually take? When I got home I Googled the symptoms of Celiac in babies. A lot of the symptoms seem to fit for my little man. He has had skin problems (eczema all over his body and rashes on his fingers), he has a dissented belly and fine hair, short stature but he is not irritable and he sleeps soundly and a lot. He has developed normally except that he still hasn't said his first word which we are working on with the Early Intervention Program.

I think a diagnosis will be a little bit of a relief, it would be nice to have to knowledge on how to help him be healthy and thrive. I'm desperate to help my baby!

I'm asking for advice... Am I just over worried? Self diagnosing? Are some babies with celiac calm, not irritable and sleep well? I have an appointment with a paediatrician on tuesday is there anything in particular I should ask him?

I'm attaching some pictures of my son. Does he have a toddler belly or does it look like celiac bloat?

Thank you in advance!

[beachbirdie]

I'm no expert, but your little guy does look bloaty to me.

I am so glad for you that the doctor jumped right towards getting the genetic testing! Most doctors are not so proactive! Are you in UK?

Your son is adorable by the way!

Welcome to the board!

[UKGail]

My cousin was an abnormally quiet and inactive baby. She was found at the time to have a severe lactose intolerance. In her late thirties, the docs finally decided she was celiac. Her Mother had been diagnosed as celiac some 10 years earlier, after suffering undiagnosed for many years.

Your son does look not unlike my eldest daughter did around that age. She had a delicate build (lowest 2%), height was lowest 25%, with a pot belly. Her head always seemed very large in photos, as does your son. She had some mild skin issues, and we had to keep her away from food colourings, and then finally twigged that she was lactose intolerant when she was 9 months old. She tested negative to celiac when she was 9 or 10. She did finally grow when she was 12, but is still just below average height and build.

I don't think the blood tests work on babies under 2, and he is probably too small to scope, so the only way doctors can diagnose celiac in children this young is if they have overt symptoms like chronic diarrhea which responds to the gluten fre diet.

I suspect the only way to look at this more closely would be to trial a gluten fee diet for a couple of months and see if you note any changes. Your docs might be very wary of this though, as they think we are all incompetent about making sure we eat a properly balanced diet in the absence of wheat, barley and rye. A balanced diet is obviously particularly important with a very young child.

[mommida]

My daughter was very calm and a sound sleeper. She also had a pot belly and had "D" and vommitted a lot too. She was diagnosed as probable Celiac around 16 months old from some elevations on the Celiac blood panel, a positve genetic test (DQ2 and DQ8), and she was just to sick for the endoscopy. She was later diagnosed with with Eosinophilic Esophagitus when she was 6 years old.

If you are going to have tests done, your son needs to eat gluten. I would continue with the testing and find out exactly what you are dealing with. Keep in mind that testing for Celiac is not 100% accurate, but at least you can rule out any other disease or disorder by having an endoscopy. Some other tests that can be done aren't as invasive, like stool collection for ruling out parasites.

I would definately get him tested for Celiac from the bloated belly and flattened buttocks.

[bluestar-127]

First of all thank you both for the quick replies! I don't live in the UK but in Canada (next best place for health care I'm told)! My sister has Lupus and is very sensitive to gluten but hasn't been tested for celiac. My doctor thought it would be a good idea to test my son since there could be a family connection. It worries me though that the blood test won't work because he is too young. My poor boy went through that terrible experience for nothing? Giving blood for a test that will not work?

I do not think that he is lactose intolerant. Until he was 13 months old he was exclusively breast fed and only drank water from a sippy cup. We generally don't have milk in the house. It kind of grosses me out and I've never liked the taste. My dr. Thought that his low weight was due to not drinking whole milk. I introduced him to it at 14 months and he refused to drink it. We finally settled on smoothies. For the past 2 months he will drink 3 8oz servings of whole milk/yogurt drinks. He's had the growth issues and big belly long before the milk.

Doctor also suggested a high fat diet like lots of scrambled eggs made with cream, cheese and butter, French fries, , cream cheese bagels, pediasure etc. 4 months so far with no weight gain!

He does have very loose stools and very rarely he might have a bout of diarrhea. Never a firm poop.

I think i will take your advice and start our gluten free home after he sees the pediatrician on Tuesday. My daughter has digestive issues too. It couldn't hurt.

Thanks again.

[mamaupupup]

You're a great mom! If you ultimately want to test for Celiac, keep him on gluten until you test to increase the likelihood of an accurate test result! (I learned this the hard way and had to reintroduce gluten...)

[UKGail]

It does sound like gluten intolerance. If you already have it in the family then your level of suspicion should be much higher. At least 50% of my Mother's family are gluten intolerant, which led me to eventually try the gluten free diet, even though I am negative to the celiac antibodies. Good luck with your doctor, and with your gluten free trial, when the doctor has done all the testing he is able to do.

[MomtoAva]

Your son's symptoms sound just like my daughter, Ava. At a year old she finally started fitting into 6-12 month clothes and then when she turned 2 she started wearing 12-18 month clothes. At 2 1/2 she'd moved up to 18 month size finally. She was always very happy and has tons of energy and was an awesome sleeper. She just never grew, and had a distended belly, never a solid poop, but it was never exactly diarrhea either. We figured she was small just because she didn't ever eat much and that that too was the cause of her distended belly. She also has a rash on her bum that we were told was eczema but it doesn't react like regular eczema, the only thing that ever helped it was neosporin at every single diaper change, and all that did was stop it from blistering and weeping. When she started talking at 2 we noticed that everytime she'd refuse to eat something she'd say "No eat. Tummy sad." Always the same thing. She was basically living off bananas and raisins.

Fall of 2011, I was describing on our family blog all her weird habits or abnormalities (the rash, liquid poo, etc.) and someone commented that those things all sounded just like her son who has Celiac disease and maybe I should look into it. And so I did. I read up on it and when I took our baby (not Ava) in for her 6 month check up, I mentioned to the doctor that COULD it be celiac disease, and our (awesomely open) pediatrician's face lit up like I had the answer and though it wasn't Ava's appointment, she immediately sent us to the lab to have Ava's blood tested. Before she let us go though she warned us that due to Ava's age the tests may be inaccurately negative.

Well, indeed, her blood test showed negative, and the pediatrician recommended I get an appointment with a GI specialist.

I didn't. I just can't handly putting someone so tiny through that. Instead, I put her on a gluten-free diet. At the end of the first month being gluten free(January 2012) she started finally fitting 2T clothes. We are now 3 months in to her being gluten-free. Or almost gluten-free, I still have some work to do on getting better at reading labels or not being lazy. One day I just let her have macaroni and cheese with her big sister and not only did she end up with liquid poo almost immediately, but she developed a rash all over her body as well. Anyway. Three months almost clean and her belly is no longer distended. Her rash is almost completely gone. We no longer hear "tummy sad". She's started gaining weight and finally has gotten up to 23 pounds! She is still anemic though, so we've got to work on that. I feel fully confident in my own diagnosis that she has Celiac disease and I can't imagine putting her back on gluten so they can do the official tests to diagnose her.

So yes, some Celiac babies are calm and excellent sleepers. Though now that she's off gluten, she doesn't sleep as well, so perhaps she slept in defense to get away from the pain?

[Skylark]

What a beautiful little boy! Yes he looks a little bloaty to me too. The classic symptom of celiac is failure to thrive, plus the loose stools and mild bloating. You absolutely did the right thing getting him blood tests. The false negatives are high but you might have a positive test and that's invaluable!

Good luck with the gluten-free diet. I hope it helps him get going.