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SCookie

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

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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

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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.

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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.

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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.

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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

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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.

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I agree with the others that a picture won't help since they all look different.

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.

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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). :(

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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

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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!

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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!

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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

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

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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

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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!

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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.

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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

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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

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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.

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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.

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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

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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

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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

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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

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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.

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