Where Can I Find A Picture Of A Toddler With Celiac?

[hawaiimama]

Did your kids have positive or negative blood work? I'm curious about method of diagnosis. My 4.5 year old is 32 lbs (weighs now what my oldest weighed at about 15 months) and REALLY small and has been since he was a year or so. He was 14lbs at a year and was 8lbs 4oz at birth and lost a lot of weight at birth and didn't regain it for ages. He was the skinniest baby. Never any folds of fat. He's not on the growth chart for height, he fell off of it when he was around 18 months. He had a neg transglutimase blood test but I know this is unreliable in kids under 5. I looked at these pics and he looks awfully like these kids but with a little bit of a smaller belly but a belly none the less. He has had growth assessments with the hand xray, and thryoid function tests but they have revealed nothing. I am celiac. Thoughts?

[slmprofesseur]

Did your kids have positive or negative blood work? I'm curious about method of diagnosis. My 4.5 year old is 32 lbs (weighs now what my oldest weighed at about 15 months) and REALLY small and has been since he was a year or so. He was 14lbs at a year and was 8lbs 4oz at birth and lost a lot of weight at birth and didn't regain it for ages. He was the skinniest baby. Never any folds of fat. He's not on the growth chart for height, he fell off of it when he was around 18 months. He had a neg transglutimase blood test but I know this is unreliable in kids under 5. I looked at these pics and he looks awfully like these kids but with a little bit of a smaller belly but a belly none the less. He has had growth assessments with the hand xray, and thryoid function tests but they have revealed nothing. I am celiac. Thoughts?

Maybe you should get him tested for food allergies. My ds was 4lbs 7 oz@ 33 wks, and gained very little weight the first year of life. He just recently got folds of fat and has recently entered the 15% in weight, previously it was the 2nd. He started improving after getting gluten and his allergies squared away.

[dadoffiveboys]

Did your kids have positive or negative blood work? I'm curious about method of diagnosis. My 4.5 year old is 32 lbs (weighs now what my oldest weighed at about 15 months) and REALLY small and has been since he was a year or so. He was 14lbs at a year and was 8lbs 4oz at birth and lost a lot of weight at birth and didn't regain it for ages. He was the skinniest baby. Never any folds of fat. He's not on the growth chart for height, he fell off of it when he was around 18 months. He had a neg transglutimase blood test but I know this is unreliable in kids under 5. I looked at these pics and he looks awfully like these kids but with a little bit of a smaller belly but a belly none the less. He has had growth assessments with the hand xray, and thryoid function tests but they have revealed nothing. I am celiac. Thoughts?

My middle son has the exact same profile - he's 4 yr old now and about 34 lbs (was aiming to be about 30 lbs or less if we hadn't taken him gluten-free a year ago). I ignored those tests and took him gluten-free anyways. My son had stopped eating all food (smart boy) and would only take the chocolate Gluten-free Casein-free formula/nutrion drink - pediasure I think. Doctor said that he must just be picky and was normal. Turns out we had to take him off gluten AND casein. His TTG test was a 20, with 20 or less being 'normal', hence why the doctor said what he said.

Now that it's been about 1 1/2 years off Gluten (we took him off at age 2 3/4) his growth curve actually went right back up. He was down to the 40th percentile in height and 1th percentile in weight. Now he is in the 85th percentile in height and the 40th percentile for weight. Still looks like skin/bones and can STILL see his ribs but his face is much healthier looking. He was pale/yellowish and from his blood tests we kept seeing a slight iron deficiency/anemia (hence the coloring from what the doctors said..). He is now good gluten-free and CF.

[hawaiimama]

My little guy did have iron issues the last time it was tested (I think he was 2.5 ish). The ped we saw as a consult seemed to think it was leftover from my anemia when I was preg with him.

He only had the transglutimase IgG and IgA tests both of which were totally negative as in zero. He didn't have the gliadin tests.

The other really weird thing with him, is his fontenel (sp?) didn't completely close until he was well over 4 (within the last six months). Have any of your kids had this issue. Nobody seems to be able to pin it to anything other that he's an odity. They tested him for dwarfism and he was neg for that because that is a symptom.

[Ursa Major]

Hawaiimama, you have celiac disease, and your son has failure to thrive. Ftt is THE most common celiac disease symptom in children. Those tests are not accurate in little kids, and even negative tests can't rule out celiac disease. In young children trying the gluten-free diet is the best test. I suggest you start your son on the gluten-free diet immediately, so he has a chance to hopefully catch up in growth!

My one granddaughter looked like those celiac disease kids, with a big, hard belly when she was a baby and toddler. My daughter thought it was cute! She wouldn't listen to me when I said it wasn't normal (that was before I figured out I am gluten intolerant).

She has herself and all five kids on a gluten-free diet now. Meghan's belly went away at some point before starting the gluten-free diet (but she was still scrawny, no butt), so my daughter claims it had nothing to do with celiac disease. Meghan is also speech delayed (still, even though she was six last month). My daughter still claims that she is one of her two kids who don't react to gluten. I disagree completely. Her younger brother (by two years) is nearly the same height as her and her twin brother (who had an obvious, miraculous change on the gluten-free diet). My daughter claims she is just petite (sigh), while she admits that Ethan (her twin brother) has delayed growth because of gluten (I don't get it, if they are the same age, both are scrawny and short for their age, aren't they BOTH delayed in growth?).

Well, at least they are on the gluten-free diet, and I am glad. I agree that little Jeremy (four) is probably not gluten intolerant. He is a tall, sturdy little boy, the picture of health, and was before they went gluten-free two years ago. He is the only one who (as far as I am concerned) doesn't have a gluten problem, just like his dad.

The oldest (8) was always tall, but dreadfully skinny, with dark circles under her eyes. Those dark circles went away within days of the gluten-free diet, and she has gained weight. And the baby (two next month) gets a horrible rash when eating gluten (DH?). My daughter loses all energy on gluten, and she knows it now. It took her two years to listen to me, but I am glad she did in the end.

[hawaiimama]

Thanks Ursa! I just noticed your in Ont, I'm in Toronto. I'm finding it really hard here with our lack of available testing/knowledge of docs of celiac. I'm thinking I should ask for a consult with a GI at Sick Kids for my little guy.

[Ursa Major]

Thanks Ursa! I just noticed your in Ont, I'm in Toronto. I'm finding it really hard here with our lack of available testing/knowledge of docs of celiac. I'm thinking I should ask for a consult with a GI at Sick Kids for my little guy.

Hey, maybe we could meet some day! I am an hours drive north of Toronto.

Anyway, if you are going to Sick Kids, make it REALLY soon! Because he needs to be on the diet NOW, not in a few months. Sooner or later he will get dreadfully ill (in fact, he probably already is, really). Call Sick Kids, I don't think you need a referral from your doctor to see them (I might be wrong, though).

On the other hand, you could just go to their emergency if your doctor won't support you.

Yes, doctors in Canada are very ignorant about celiac disease on the whole. That is why I had to self-diagnose, or I might be dead now.

[SCookie]

Amazing! I haven't checked this site in weeks or more and there's my post from way back when, back on the front page! I am so glad my request has helped other people. (And judging from the number of views of this post, LOTS of other people were interested in the same kind of info.) Awesome.

I am still on my search for answers. We were referred to a pediatrician who pronounced him healthy on a cursory exam, recommending pediasure. In June I took photos of him with me to our regular doctor, to get his attention on how skinny he is. He was (as usual) more concerned with head circumference (large in comparison to his other growth lines). We've recently been to a neurologist who sent tests off for a variety of rare things. (Not all back, but so far everything is normal, including thyroid and bone surveys.) We'll see what happens, but he agreed that if it is all normal we should proceed to a pediatric GI. At last.

I do not expect a GI referral out of my regular doctor, who has directly nixed the idea of celiac. We will move next summer (back to the US) and I can pursue further. Meanwhile we started gluten free last week and are hoping for improvement. I logged in to post questions on that.

Meanwhile a couple of photos of my boy. I took them a while ago, but they make me sad to look at so...

http://i255.photobucket.com/albums/hh145/SC00kie/skinny3.webp

http://i255.photobucket.com/albums/hh145/SC00kie/j5.webp

http://i255.photobucket.com/albums/hh145/S...e/thebelly2.webp

http://i255.photobucket.com/albums/hh145/SC00kie/b3.webp (this isn't a skinny shot, but since those make me depressed I thought I would put a happy one on too.)

[Ursa Major]

Yikes, that belly is huge! I hope that the gluten-free diet will help. It will take a few months for that belly to disappear, so don't expect instant improvement at least in that regard.

[mirabella]

Here are a few pictures of my son when he was really sick. This was before he was admitted to the hospital.

http://img.photobucket.com/albums/v172/sar...C-man_fixed.webp

http://img.photobucket.com/albums/v172/sar...ss26/Outtie.webp

http://img.photobucket.com/albums/v172/sar...ss26/Carter.webp

http://img.photobucket.com/albums/v172/sar...skinny_baby.webp

http://img.photobucket.com/albums/v172/sar...in_the_bath.webp

http://img.photobucket.com/albums/v172/sar..._at_Redfish.webp

http://img.photobucket.com/albums/v172/sar..._my_butt_go.webp

Hospital & the day after his release from the hospital:

http://img.photobucket.com/albums/v172/sar...e_fresh_air.webp

http://img.photobucket.com/albums/v172/sar...is_baby_boy.webp

http://img.photobucket.com/albums/v172/sar...efore_going.webp

http://img.photobucket.com/albums/v172/sar...26/C_Man_av.webp

http://img.photobucket.com/albums/v172/sar...lay_mobiles.webp

My son was 15 & 16 months in these pictures. He had an extreme case of Celiac Disease and was classified as "failure to thrive". Today he has totally made up for lost time and is over 45 lbs and he's not even 4 yet! He is also 3 foot 6!

Hope this helps you out.

This breaks my heart to know someone this small and precious could be so sick. This is just not fair. I would rather be sick than a child.

[hawaiimama]

Here are some pics of my DS. You can see how painfully skinny he is. (not quite sure how to add pics so pls forgive what might be a mess).

http://i40.photobucket.com/albums/e202/naw...li/DSC_4289.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4283.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4288.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4287.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4279.webp

[Ursa Major]

Here are some pics of my DS. You can see how painfully skinny he is. (not quite sure how to add pics so pls forgive what might be a mess).

http://i40.photobucket.com/albums/e202/naw...li/DSC_4289.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4283.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4288.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4287.webp

http://i40.photobucket.com/albums/e202/naw...li/DSC_4279.webp

I looked at your pictures. How old is he? He looks just like a slim kid to me, not painfully skinny. With so many overweight kids running around, a slim kid can look too skinny.

Still, even if he is not too skinny, if he has symptoms of celiac disease, he can have it. Not all people with celiac disease are too skinny by far, lots look just fine, and almost half are overweight.

[hawaiimama]

I looked at your pictures. How old is he? He looks just like a slim kid to me, not painfully skinny. With so many overweight kids running around, a slim kid can look too skinny.

Still, even if he is not too skinny, if he has symptoms of celiac disease, he can have it. Not all people with celiac disease are too skinny by far, lots look just fine, and almost half are overweight.

He will be 5 in october. He's 32 lbs and 38" tall, wears size 2/3 clothes. Those undies he has on are a 2. My other son was 40lbs before he was 2 and I think this guy is same hight now that my older one was at 2 because he's wearing those clothes.

[Ursa Major]

He will be 5 in october. He's 32 lbs and 38" tall, wears size 2/3 clothes. Those undies he has on are a 2. My other son was 40lbs before he was 2 and I think this guy is same hight now that my older one was at 2 because he's wearing those clothes.

Well, obviously he is very short. He looks like a normal two-year-old, which is definitely a red flag for celiac disease. My kids always had small bums, and so do my daughter's children. Her kids have been on the gluten-free diet (plus other intolerances) for two years now and the ones who were too skinny have gained weight and height. Still, they are slim kids (both my husband and I were slim when kids, and so were all my kids, and all my grandchildren are as well) and always wear undies for kids younger than them, because the size for their age is way too big.

My second-youngest daughter (who refuses to get tested or try the gluten-free diet, despite many symptoms) had absolutely no bum until she was about nine years old. Just hanging skin, it looked awful. I didn't know anything about celiac disease then, or I would have had her tested.

When she started swimming competitively, she started developing muscles in her bum, and looked normal then. So, I thought it was just that she needed more exercise. Which isn't true, because my kids always got tons of exercise, and very little time just sitting around (tv was severely limited). I was just looking for an explanation.

If your son is wearing size 2/3 clothes, his bum is in proportion to his other measurements.

Do you have him on the gluten-free diet yet? I don't like the fontanel thing either. Failure to grow is one of the most common celiac disease symptoms. He can hopefully still catch up in height if he starts growing now, but if you wait much longer, he might end up being really short.

I don't believe he could possibly have dwarfism, because he is perfectly proportioned, and dwarfs are not. And he is already too tall for a midget. I think it is simply celiac disease, and his main symptom is failure to grow.

[hawaiimama]

He is pretty much on it by default because of me but that is only in the last couple of weeks or so. I only found out myself the end of june and I was away from him for a good part of July. His doc is away until sept. I took him to the walk in doc we see and had the blood work but I don't feel comfortable enough with him to ask for the referal (I don't like him that much - he's a bit of a weirdo).

He is def not a dwarf, they did test him for that.

[Ursa Major]

He is pretty much on it by default because of me but that is only in the last couple of weeks or so. I only found out myself the end of june and I was away from him for a good part of July. His doc is away until sept. I took him to the walk in doc we see and had the blood work but I don't feel comfortable enough with him to ask for the referal (I don't like him that much - he's a bit of a weirdo).

He is def not a dwarf, they did test him for that.

Did you get the results of the blood work back yet? If he can't see your doctor until September, and is on the gluten-free diet now, you realize that he can't have a biopsy any more than, right? Because it will be meaningless by then, if his villi are damaged, they'd have healed by then.

But you should measure and weigh him now, and keep a diary of what he is eating. If he has started growing and gaining weight by the time you see your doctor (even just a little), you will have enough evidence to at least get a diagnosis of gluten intolerance.

[hawaiimama]

Did you get the results of the blood work back yet? If he can't see your doctor until September, and is on the gluten-free diet now, you realize that he can't have a biopsy any more than, right? Because it will be meaningless by then, if his villi are damaged, they'd have healed by then.

But you should measure and weigh him now, and keep a diary of what he is eating. If he has started growing and gaining weight by the time you see your doctor (even just a little), you will have enough evidence to at least get a diagnosis of gluten intolerance.

yes his blood work was neg but they only tested him for transglutimase (sp?)

[Ursa Major]

yes his blood work was neg but they only tested him for transglutimase (sp?)

Ugh, why oh why are doctors so ignorant when it comes to celiac disease? He should have had the full celiac disease panel done, which includes five different tests.

The one negative really is meaningless.

Anyway, just keep him gluten-free and make sure you report everything for the doctor. At his age, the diet is the best test anyhow.