I think my 21 month old is FTT. Celiac is a possibility based on family history. We're in a place where our medical care is sporadic, but he's been slowly dropping off the growth chart since 10 months or so. Maybe earlier...

I think his stomach looks distended and he has a skinny butt - definitely moreso than his older siblings, who were chubby things.

I just came back from a trip to India and the kids begging on the streets are fatter than my kid, who eats plenty. But, he doesn't look as bad as hospitalized ethiopian kids (the only photos I can find).

Is there anyplace an actual picture of something in between? I don't know why I want to look at this so much, but I can't get to a doctor for a bit and I'm obsessing.

Could be giardia or something based on where we live (PRC), but on the other hand, the growth slip started several months before we left the US so I'm not inclined to think so.

Thanks

SCookie--Why would a picture help? If your child is sick, your child is sick. Comparing him to a picture of another child makes no difference honey, you need to find him medical help. I have 5 kids and they were all shapes and sizes. My middle child always had a skinny butt, when he was a baby, as a child, as a teenager, and now at 28, he still does. My 2nd child was very chubby at 4 months, then was very skinny for years and years. My 4th child has never been skinny and now he is 6'3 and 280#. You can't go by a picture of someone else's child. If you think there is something physically wrong with your baby, then you must find a doctor and go from there.

Is your son sickly? Does he have diarrhea? Constipation? If he is a good eater and doesn't seem to have any problems, I wouldn't worry for. Maybe he is just slender. There is nothing wrong with being slender, not if he is healthy. All babies are not chubby! If this is the case, be thankful hun. If this isn't the case, explain further for us, give us some idea what is going on so we can make other suggestions.

I guess I'm just trying to figure out if his abdomen is *really* distended- which I think it is - or if it's just a toddler belly and I'm nuts. Or if his tiny butt that can't hold up 18 mo pants at 21 months is *too* skinny. What does "wasting' look like vs. just skinny?

He's fallen from the 65th percentile at 9 months into below the 5th percentile now, and I think he eats plenty. I don't know what the problem is. Last time he was seen, the doctor said her inclination was that he's "normal but small". I don't know- he's hitting the milestones, etc. but I'm recently thinking he doesn't look that healthy. His ribs stick out and he looks like a bobble-head doll with his giant head on his teeny little body. I just was wondering what a child might look like who has an absorption problem but who is not on death's doorstep starving.

He has what I would term loose stools and occasional but not constant watery diarrhea. He's never had a 'formed' stool ever. I think he eats as much as he should, but he just isn't gaining weight. I can see the kid's rib cage in his back, above the protruding belly, etc. and he doesn't have the chubby thighs or arms my other kids did.

Sorry if this was a waste of everyone's time.

What you are describing sounds to me like there is something going on in your son that could be better.

Putting him on a gluten-free diet certainly can't hurt. If "PRC" means what I think it does you should be able to do that without too many problems.

Let us know how it goes.

I agree with the others that a picture won't help since they all look different. But my child sounds a lot like yours. In fact I would be rich if I had a dime for every time someone including every dr, nurse, and medical personal that said " She looks picture perfect and healthly at first glance" .

Once you strip her clothes off (winter here so everything is covered up), she has a big belly far bigger than the "baby Belly" babies have - but it does come and go. Some days it is huge others small but always a bulge. She can't hold up any pants even with cloth diapers and I can't put a dress on her without bloomers because the diaper will fall off.

I have sticks in the yard that are bigger and sturdier than her arms are. I feel like I will break her if I hold her arm. They are that frail feeling. Bird bones come to mind when you feel her arms. Her legs aren't much bigger.

She is perfectly portioned and very very tiny but very perfect looking. Except for those horrible bags under her eyes. And the constant mound of diapers which is sometimes straight liquid and other days some mushy stools.

If you feel this could be it, easy thing to do is try the gluten free diet and see what happens.

Stacie

My son sounds like that. He just turned 3, but is only 26.5# and 34.5". He actually grew almost an inch in the first 2 mos of being gluten free, which for him is great! We're not as worried about his weight as it's been consistent on the charts for some time now and he's never been a big kid. His height is under the chart now though and wasn't a year ago. He has tummy problems, but also has a history of other food intolerances that have affected his weight. I never thought his tummy looked big, but I have a friend whose son has gluten issues and she said his tummy looked textbook for distension so I'm not sure a pic would necessarily help b/c sometimes you just don't see it if you've looked at it for so long. Good luck.

I think a picture might be very helpful. Some people understand things more easily if there's something visual for them to understand. And yes, doctors tell us all the time that our kids are normal, it's all in our heads, etc., when there might be a very clear visual clue that something is wrong wrong WRONG--but they just don't see it.

I had a pediatrician tell me that my son's sudden onset of yellow skin was because his father was Asian (note: his father does not have yellow skin." Turns out he was in congestive heart failure and his liver was enlarged..

I have a friend whose children look like classic celiac children (small, very thin, but with distended bellies), and I would LOVE to show her a picture. When you live seeing something every day, it's very easy to lose perspective.

This isn't a photo, but a drawing: www.pigur.co.il/imgceliac.jpg (hope it works)

Apparently, the distended belly combined with the saggy tush is the key (the tush sags because there is no fat on it).

drawing: www.pigur.co.il/imgceliac/celiac.jpg this one works, sorry about the other one! (Cut and paste in your browser.)
related discussion with link to same drawing (link actually works in this one): www.glutenfreeforum.com/index.phpshowtopic=18505

I agree that a picture could be helpful as people who share a certain health issue or congenital condition often have a certain "look" to them that is hard to put into words but instantly recognizable when seen.

I hope that drawing is useful for SCookie!

Thanks!

I looked at the drawing and the stomach is definitely there, the butt is more of a maybe. I don't think my son's bum looks as bad as the one in the drawing, though he does seem to have some sag. So who knows. The stomach can't be normal though- there's no fat there, it's just bloated and hard feeling. And enormous.

Next step is to figure out where I should go to get him looked at. We have only the most basic of primary care here.

I suppose I also need to consider something like worms (ick), though the growth slide began prior to any third world country travels. Wouldn't that be an easier answer, though...

Thanks for your time, folks!

Thanks for posting this. It is true that everyone can look differently but after looking at this drawing I now realize that my daughter did have that type of belly before dx. And I just thought it was baby fat and that she would stretch out during puberty and lose the belly then. Never gave it a thought that was how someone with Celiac could look.


Thanks again.

Virgie

son 18 UC,EE, IBS daughter 13 dx Celiac 9/07

This is the only picture I have of Emmie when she was sick....it isn't the greatest, but maybe it will help. The picture on the left in the pink dress is after being on the diet for 3 months. The bottom right picture kind of shows how frail she was, you can see her ribs, her pale color, little arms, and big belly.

It took us a year and half to get a diagnosis, and we went through several doctors. She never had diarrhea either, just large and mushy stools. She never really lost weight, she just went from 12mo to age three w/out gaining a single ounce. And she only grew about 1/4 of an inch. We finally took her to a GI doc, who said straight away she looked like a Celiac.

Keep pushing to find the answer, we've all been down a similar road to get our kids well! Good luck to you. Here's the link:

http://img.photobucket.com/albums/v513/taweavmo3/EJ.jpg

Thanks everyone! I'm really sorry I did not get on here and say thanks sooner.

tavweavmo - your photos were helpful. My son does look like your daughter did.

I spoke with our medical care folks and arranged to meet the pediatrician when he is here in February. (We're remotely located.) Meanwhile, I had my son seen again by our local clinic, and he's sustained his growth curve at just below 10th percentile in weight but has dropped in the last 3 months from the 60th in height to the 10th. He's had ZERO height growth in 3 months, which is freaking me out.

Anyway, in advance of our pediatrician visit, they're running growth hormone levels, thyroid, parasite screen, LFTs, lead level, a urinalysis, and maybe more but that is all I can recall right now. I will probably have to get sent somewhere else for more screening (including celiac) if these all come back normal. The doctor this time seemed to (finally!) agree that we need to at least evaluate it.


Thanks!

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.jpg
http://img.photobucket.com/albums/v172/sar...ss26/Outtie.jpg
http://img.photobucket.com/albums/v172/sar...ss26/Carter.jpg
http://img.photobucket.com/albums/v172/sar...skinny_baby.jpg
http://img.photobucket.com/albums/v172/sar...in_the_bath.jpg
http://img.photobucket.com/albums/v172/sar..._at_Redfish.jpg
http://img.photobucket.com/albums/v172/sar..._my_butt_go.jpg

Hospital & the day after his release from the hospital:
http://img.photobucket.com/albums/v172/sar...e_fresh_air.jpg
http://img.photobucket.com/albums/v172/sar...is_baby_boy.jpg
http://img.photobucket.com/albums/v172/sar...efore_going.jpg
http://img.photobucket.com/albums/v172/sar...26/C_Man_av.jpg
http://img.photobucket.com/albums/v172/sar...lay_mobiles.jpg

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.

Hi Carters Mom

I was shocked when I saw your pictures. My grandson looked exactly like this! Everyone always said he's so healthy looking. They never saw him with his clothes off! When my daughter took him to the ER, the dr. said "A baby won't die from vomiting or not eating". He never even touched him or looked at him unclothed. He made an appt with a ped. Dr. for a week later. My daughter was very upset and the Emerg. Dr. made her feel like a fool for taking her child to the hospital. The first words out of the pediatricians mouth were Celiac Disease and he put him in the hospital. I am so glad your son has done so well! The doctors out there need to be educated on this disease.

Yes I can't agree with you more, doctors everywhere need more education regarding Celiac Disease. We went through several doctors before finally finding a ped that recommended a specialist three hours away. We went from a local doctor to the pediatrician an hour away and then at the ped's office we headed 3 hours away to Boise Idaho to see a ped gastreoentonologist (sp?) who was waiting in his office for us to arrive. Upon our arrival he took one look at Carter and said that he was 99 percent sure it was Celiac Disease and Carter was admitted to the hospital right away. He was in such a bad way that he couldn't have surgery right away, he had to get vitamin K injections first and it was a struggle to get an i.v. in him due to his veins collapsing.

Today Carter is thriving. Here is a current photo of my big boy:
http://img.photobucket.com/albums/v172/sar...26/DSC_0149.jpg
http://img.photobucket.com/albums/v172/sar...26/DSC_0037.jpg
http://img.photobucket.com/albums/v172/sar...26/DSC_0003.jpg

I hope these photos can help other parents out there.

Sarah

Hi

This one is of my daughter a few weeks after starting a gluten-free diet, she took a long time to gain weight as her villi were completely flat. Her belly button also popped out as her tummy grew bigger.

http://s9.photobucket.com/albums/a97/bebeb...nt=IMG_1799.jpg

Here is one just to show how skinny her face was.

http://s9.photobucket.com/albums/a97/bebeb...nt=P1010086.jpg

and we found it hard to get a good tummy shot but here is the best we could get.

http://s9.photobucket.com/albums/a97/bebeb...nt=IMG_1793.jpg

She was 18 months in these and is now a very healthy 3.5 year old.

Hope that helps
Belinda

Belinda,
Those photos are some of the most strikingly Celiac I've ever seen. Oh, poor baby!

FWIW - I went through my photos and just could not find a really good one. I will describe -- underweight, shorter than sibling and peers, ribs petruding, no real budda belly, sunken eyes, once we shaved his head at age 3 it was very disturbing, it made it more evident that his face was very thin and the eyes were just not glowing with health.

The real tell tail photo I can not find, it is of him at age 3 and his sister age 18mo old in the bath tub. He looks smaller than her, although he really wasn't. She had puggy arms, full face, no ribs, 'healthy' and he was scrawny and looked sick, like a Tom Hanks in the movie he plays a gay lawyer dying of aids.

It was also around this time him age 3, her 18 mo old that people thought they were twins, especially in the double shopping carts at Costco. Even today, 2 yrs gluten-free, and 23 months apart they weigh exactly the same, although he is a bit taller.

Now, his oldest brother is skinny, my dh is skinny, neither of them have butts, so it really was not odd to be so skinny and be one of my children. It was just a very sickly look in his face that caught my attention in the bathtub photo, it is a haunting photo I can see in my mind. I knew he was sick, I was forever persuing until I hit too many brick walls and give up looking for a spell and then persue it again, 3 1/2 years I was searching until I finally found a doc to really take a close look.

The scarist lab result we have is his Creatinine levels -- he was wasting away before our eyes. He has some heart damage which I believe to be from muscle wasting. I firmly believe he would not be here today if we had not gotten answers when we did.

Go w your gut. If he is sick and medical care is not an option, try the gluten free diet. If he is really sick, my newly dx Celiacs don't tolerate dairy either, so gluten-free and DF or Casein Free would be the way to go.

I think I am going to cry! I am so thankful to the person who posted asking for pictures and for all the people who posted pictures of their little ones! My daughter 21 months, looks exactly like these pictures.... from the distended belly, the frail limbs, the ribs sticking out, slight dark circles under eyes (somedays worse than others)....and the reply from WorriedtoDeath: that description was sooo helpful and I feel like it perfectly describes my daughter. She has been labeled as failure to thrive...weight and height dropped off the charts since 3-6 months...I have been adding as many calories as possible, of course alot of them come from pastas and other gluten foods... Her stool is unpredictable... constipated to watery diarrhea, to dark mush, to very smelly mush. She is VERY clingy to me, although this could be just a toddler thing. Her pediatrician has mentioned celiac disease but I don't think she's ever run blood work for it... she has had bloodwork done for other tests and has been to an endocrinologist who just labeled her as malnourished.

Jadesmom: When you say your daughter's belly button popped out as her belly grew, you mean before she went gluten free? My daughter's has done the same...I even asked her pediatrician about it...she didn't really give me an answer. I just can't believe this...it seems like I found this website and all the pieces are just falling together to make this puzzle that makes so much sense!

Angela

Hi Angela

My Daughter was also very clingy, I thought she was just a really shy sensative girl, she wouldn't leave my side. Also she would scream if people touched her or came to close, the drs was a nightmare. But since going gluten-free she is the most active girl I have ever met, she makes friends really easily and is the life of the party.

Also she used to have a 'inny' belly button as a baby, but then the more her tummy grew from the gluten it started to stick out, the drs said it was a hernia and could be surgically removed. But once she was on the diet it just went in when her belly did.

Also the drs said she would be back to normal after six weeks on teh diet, well it took six months, at least three to tain any weight, and she wasn't getting any gluten, it was just she had such bad damage that it took longer then usual.

Also one more thing is a few months before the diganosis and a few after she used to wake up at night hungry, she would eat every hour or two at night, she would start screaming and say 'door' (for fridge door) and my husband would get her up and give her spponful after spoonful until she went back to bed and then woke again in a nother hour or so. ONce she was diganosed it used to be just potato we gave her but before that just what ever leftovers we had which were mostly gluten. I remember she used to just eat herself silly then everythign else used to come up she would throw up so much, lucky we had floor boards. And her nappy was a mess, it was like one big clean up after she ate.

HOpe that helps
Belinda

Belinda,

Thanks so much for all the information! I'm so happy your daughter is doing well now! We are starting our daughter on a gluten-free diet today. We go every couple of weeks for a weight check, but I am just going to try the diet and give it lots of time and see if she improves. I just can't get over how similar my daughter looks to all the pictures on this thread! She is 17.8lbs at 21 months.. she was 7lbs 6oz at birth. I mean, she is literally in the negatives on the growth charts!

I just can't wait to see if this will make an improvement!

Angela

Hi Angela

Are you going to get a biopsy done? IF so you should not start her on the diet first. I am surprised they haven't done a biopsy already, I think it is very important just to make sure that it is celiac and htere isn't anything else wrong.

I hope you will get a dr who will actually help your little girl.

Belinda

The picture of your baby helped me TREMENDOUSLY. Our baby looks exactly like that, and I haven't been able to find anything that would reassure me that, yes, we are on the right path, and yes, other children look like this at some point!
Our child slipped off the growth chart at around 9 or 10 months as well. Reading posts like yours really give encouragment that, okay, there is someone else out there going through this whole thing, because with things like this it is hard not to second guess yourself....over and over again. I was looking up pictures of celiac babies, and it is not very easy to find. Finding information on babies and weight and celiac and little scrawny emaciated looking infants (not older children) I've found is not easy. Most things are geared toward older children. I know exactly why you are looking for pictures, because I am too.....obviously we both want some confirmation to be able to chill out! Thanks for the post. Hang in there and keep looking up. It is 4 a.m. where I live, and I could not sleep, worrying over this same issue. Now I think I can finally go back to bed.

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.

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 GFCF 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.

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.

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.

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.

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.jpg
http://i255.photobucket.com/albums/hh145/SC00kie/j5.jpg
http://i255.photobucket.com/albums/hh145/S...e/thebelly2.jpg
http://i255.photobucket.com/albums/hh145/SC00kie/b3.jpg (this isn't a skinny shot, but since those make me depressed I thought I would put a happy one on too.)

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.

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.

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.jpg
http://i40.photobucket.com/albums/e202/naw...li/DSC_4283.jpg
http://i40.photobucket.com/albums/e202/naw...li/DSC_4288.jpg
http://i40.photobucket.com/albums/e202/naw...li/DSC_4287.jpg
http://i40.photobucket.com/albums/e202/naw...li/DSC_4279.jpg

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.

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.

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.

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.