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Possible Celiac In 9 Year Old

Homefiresburning

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Homefiresburning Newbie
Homefiresburning
Posted

I am a newbie to all of this and wanted to get some opinions from btdt parents.

Dd will be 9 in 2 weeks. She currently weighs less than 45 lbs, 5 lbs below the 5th percentile for her age. The doc doesn't seem too worried. We've never had any blood tests, aside from normal anemia testing (which was okay this last time). She has always been small, but keeps falling further off the charts. She was 6lbs 9 oz at birth, 19 lbs at a year and 24 lbs at 2, so small, but not off the charts. My other 2 girls are above the 90th percentile for height and weight. My 6 yr old is almost 15 lbs heavier than my almost 9 yr old. My husband is short but broad and I'm tall and big boned. Neither of us have tiny family members. I'm rather shocked that the doc isn't even concerned.

Dd isn't a wonderful eater. She really just wants to eat bread and cheese. We make her eat other things, but given the choice, she'd stick with those options. She will eat fruits and veggies and eats 3-4 servings a day of each. She is always constipated, though. Fiber tablets haven't seemed to help.

She also has a diagnosis of asperger's syndrome. We have behavioral and focus difficulties due to this. Her complexion is extremely pale with dark circles under her eyes at all times. People always think she is sick. She is now having headaches nearly every day, complaining that her eyes hurt along with them. She has difficulty sleeping which has been helped by adding melatonin, but she often wakes in the middle of the night and cannot get back to sleep.

So, my question is whether this sounds like it could be celiac? I feel like we have some nutritional issues, but no idea where to start. Allergist or gi? Doc hasn't even mentioned either. She has mentioned a neurologist for the headaches. How in the world do I find out what is going on? Why the heck is my kid so small? We have a 4k deductible, which throws a wrench in there too. Ugh!

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gluten free overseas Apprentice
gluten free overseas
Posted

Yes, you should definitely explore celiac for your daughter. My older son, who is six, had a lot of behavioral issues along with some other symptoms. With entrolab, we found out that he is intolerant to gluten, casein, and eggs. What a HUGE difference!

Just a word of warning though. In some children, gluten and casein act as opiates (there's a good article about this on this celiac web site). When we started the diet with him, he became really violent for about two weeks--screaming and kicking us. Finally, that went away. It's like withdrawal. And he shot up overnight! Everyone is just exclaiming, "Your son has grown so much all of a sudden!"

There are some good web sites about the gluten free/casein free diet--it sounds terrifying at first, but it can be done! I use coconut milk in a lot of my baking, I cook my pancakes in bacon fat instead of butter... it's okay. The food still tastes good!

maximoo Enthusiast
maximoo
Posted

If I were you I would definitely have Dr. run a celiac panel, and have a bone age scan to see how much growth she has left. Also have her vit D level chkd. It can be ordered by the gen Dr or an endocrinologist. Puberty is just around the cnr and you want to get to the bottom of this sooner rather than later. My DD fell off the charts @ age 12.5. She was always in the 10-25th pctile consistantly since birth. She weighed 72 lbs and was 4'7. Most of her peers are well over 5 ft & have their cycles already. Anyway after discovering the high antibodies for celiac I put her on a gluten free diet at the end of May & she grew 2 inches & gained 4lbs over the summer. Multivitamins, calcium, & vit D drops as well as milkshakes & lots of sleep all helped. Even if your DD doesn't show any positive antibodies you should still try a gluten-free diet to see if there is a difference. Sometimes there are false negatives. And there is no harm in trying a gluten-free diet. I recommend reading Gluten free Living for Dummies. Lots of great info & explains that for some ppl there may be a correlation of autism & celiac. My DS has a mild case of autism.(PDD-NOS) and at age 16 he showed high antibodies as well so he is gluten-free too.

There are tons of threads here that will help you. Read as much as you can & get the tests done. Best of Luck & you & your DD.

shadowicewolf Proficient
shadowicewolf
Posted

she sounds exactly like i was prior to diagnosis :blink:

I was small and remained so until i was eight (think i was still wearing 2T clothes at this time), then i somehow had a growth spert in there. I'm still short today (5'4") where my parents are closer to 6'

I had (and still do) have issues with aspergers and adhd (medication never worked for me).

I always craved breadish stuffs

Before dx i had insomnia really bad

Always had "ibs" (so the doctor called it).

At this point in time, please get her tested. Even if it doesn't come back positive, a gluten free diet does wonders for asperger syndrome (seriously, no joke).

Homefiresburning Newbie
Homefiresburning
Posted
  • Author

Oh my. If she were allergic to eggs, I think we might be up the creek without a paddle. She has already decided to be a vegetarian and will not waver from that.

I should say we tried Gluten-free Casein-free 2 years ago, but she was in school and may have possibly been eating gluten from somewhere. It didn't seem like it worked really well.

What exactly is a celiac panel? What are they looking for?

domesticactivist Collaborator
domesticactivist
Posted

Definitely look into it. You might also look intothe GAPS diet (there is a blog linked from my profile with resources). It has helped many people with autism but does go beyond gluten-free/CF to actual healing.

My daughter is tiny (never hit growth chart - is now 12.5 years, 4'4 3/4" tall and something like 50-55lbs) she has tourette's and some other issues as well. She used to eat nothing but sugar (grains) and cheese, and a couple vegetables. She'd usually have one other food she'd eat for a couple months then not touch. She wouldn't eat any kind of meat. The GAPS diet has completely changes her diet. She now eats meat and far more veggies, eggs, only a bit of cheese. She is not a sugar fiend any more.

We go back to the endocrinologist next week - I know she's grown about 1/2 inch from our last visit six months ago (bone age was 9.4 or so, I'm not remembering perfectly) so that was a good sign.

She does not have celiac genetics but her brother does. He also has lots of celiac symptoms (she doesn't) he is turning 11 next week and has grown several inches in the past couple months! He's always been on the small side of average, but this spurt has coincided with our dietary changes.

mommida Enthusiast
mommida
Posted

My opinion... When a doctor gives an Asberger's diagnoses, they should send the patient for allergy testing and start looking into diet changes.

Cooking/ baking without eggs is challenging at first, but then you find some great recipes. I LOVE The allergen-free baker's handbook (how to bake without gluten, wheat, dairy, eggs, soy, peanuts, tree nuts, and sesame) by Cybele Pascal. Lorka's working on a cookbook too! I'm trying to test out some recipes for her.

You can use flax ad chia for an egg substitute that can give you some extra omega oil. I'm still exerimenting on the best time to use which.

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shadowicewolf Proficient
shadowicewolf
Posted

My opinion... When a doctor gives an Asberger's diagnoses, they should send the patient for allergy testing and start looking into diet changes.

Cooking/ baking without eggs is challenging at first, but then you find some great recipes. I LOVE The allergen-free baker's handbook (how to bake without gluten, wheat, dairy, eggs, soy, peanuts, tree nuts, and sesame) by Cybele Pascal. Lorka's working on a cookbook too! I'm trying to test out some recipes for her.

You can use flax ad chia for an egg substitute that can give you some extra omega oil. I'm still exerimenting on the best time to use which.

Most of the time its a child psychologist that gives the dx for aspergers, not a gp doctor :(

I don't even know how they would do a refrence from there over to an allergy clinic.

eatmeat4good Enthusiast
eatmeat4good
Posted

Oh my. If she were allergic to eggs, I think we might be up the creek without a paddle. She has already decided to be a vegetarian and will not waver from that.

I should say we tried Gluten-free Casein-free 2 years ago, but she was in school and may have possibly been eating gluten from somewhere. It didn't seem like it worked really well.

What exactly is a celiac panel? What are they looking for?

You could check out Vegiac.com....it is a site for Vegetarian Celiacs..you might find good info there. Being a meat eater, I didn't stick around there very long, but it looks like it might be good for those who are vegetarian and celiac.

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