Could My Daughter Have Celiac? Constant Hunger

[e&j0304]

I have a 2 1/2 year old daughter whom has had many problems in her short life. I want to give as much of a brief history as I can.

Ella has suffered with "behavioral problems" from infancy on and as an infant would want to nurse around the clock and would never let anyone hold her but me, including her father. She would scream for hours on end until I came back to feed her. As an older infant, it became obvious that she had an insatiable appetite. At 9 months of age she was eating like an adult (an entire chicken breast at a time). She continued to eat very large portiions, but remained very small and was only 18lbs and 27inches at a year old. All the while, Ella was and still is very clingy, and irritable. She just doesn't seem happy. Ella has a bloated, or distended tummy, bruises easliy, has discolored teeth, greasy stools, gas, is still very short at 2.5 years old, was diagnosed with "failure to thrive", fatigue, what seems to be depression at times, and is very irritable.

At 14 months old, Ella was tested for diatebes and thyroid function and both were normal. For the next year we attempted to control her "behaviors" to no avail. She seems CONSTANTLY hungry and asks for food every 15-30 min. all day long. She never leaves food on her plate and wants to eat everyone else's food. Ella was seen by an endochrinologist a few months ago and they tested her for Pradar-Willi Syndrome and some hormone deficiency and they were normal. They then sent us to a psychologist. The psychologist thinks that she has more than just a behavioral problem so they now want us to go to a psychiatrist for medication.

We do not want to send Ella to a psychiatrist without ruling out all medical conditions she may have. Does this sound at all like it could be celiac disease? Has anyone else seen symptoms like this in their children?

Ella struggles socially because of this and has a hard time interacting with friends and peers because she is so preoccupied with food. She would rather sit at the table and eat than do anything else and is so happy while she's eating. She would prefer to eat than get a new toy...I had to drag her into a toy store recently because she said "I don't want a new toy...I just want to go home and eat!" I have her on video eating continuously for over an hour while she knows her grandparents are outside playing with her little brother and her friends. Nother is as important as eating is to her.

We just need some answers and someone to help us. Thank you for reading if you've made it this far...

Shannon

[celiac3270]

Failure to thirve, depression, irritability are all common in children with celiac disease. The constant eating could be because she's not absorbing many nutrients (due to intestinal damage from celiac) so she has a greater and more constant appetite than the non-celiacs.

[KaitiUSA]

Sounds worth being tested for. She seems like she has some symptoms and definitely something not to ignore.

[Guest taweavmo3]

OMG, a psychiatrist and meds? This would infuriate me as a parent, especially since clearly all possible causes have not been ruled out. What is wrong with some of these people? Thinking that a 2.5 year old is acting this way due to psych problems is insane, especially since it seems pretty obvious that due to FTT, it's clearly a malabsorption problem. A child doesn't eat all day and not gain weight for NO apparent reason, UGH!

Sorry, don't mean to rant....I'm just extremely frustrated with the lack of education out there. I'm shocked to be honest, and I think it is so sad that we, as parents, have to search for answers ourselves after being let down time and time again. I know doctors aren't perfect, but I'd much rather a doctor just say "I don't know, but I'll try to find out for you" than give some b/s answer and send us running around in circles while our children get sicker and sicker.

Allrighty then, I'll get off my soapbox and answer your questions! My daughter ate contantly, and never grew after 12 months old. It was a joke in our family how much food Emmie could put away. She was also extremely irritable, clingy, threw major temper tantrums, had a bloated belly, smelly stools and gas. I finally just took her to a GI myself, with no back up from the ped. The GI was great, he listened to me and scoped her a week later.

We lost so much time with our little girl, she was miserable for two years of her life. We've only been on the diet for four months, and she is thriving and acting like a regular child. She still has her moments, but this past week I have seen a HUGE change yet again. Her improvements seem to come in spurts......I can't explain how great it feels to see her happy for the first time in a long time.

You might try a little gluten free experiment for two weeks on your own. I did this about 3 months before I took my daughter to the GI. I saw a great improvement, and knew I was onto something. Plus, this gave me a little "proof" to take to the doctor.

Good luck!

[lbsteenwyk]

Tamara is right, your daughter has numerous symptoms of some type of malabsorption syndrome. Have you been to see a Pediatric Gastroenterologist? Even if you have to travel out of town to see one, I think a Pedicatric GI doc would have a better insight into your daughter's problems than even an adult Gastroenterologist would. At the very least, you should insist that your doctor do a complete celiac blood panel on your daughter:

Full Celiac Panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase

Good Luck!

[KaitiUSA]

Full Celiac Panel

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase

The full panel is those tests plus the Total Serum (IgA)

[mommida]

My 10 month old daughter was eating more food than I was and not gaining any weight. She has numerous symptoms.

GET THE TESTING DONE FIRST! Then try a gluten free, casien free diet. You may try and introduce dairy after some stomach healing has occured. I would try the diet changes before letting my child take any drugs. You need to look into pyschotropic drugs and their affects on children, and how little to no testing was done for children taking these drugs.

Best of luck!

Laura

[SharonF]

Shannon, I think everyone else has given you very good advice, I just wanted to tell you that I hope you can figure out a solution and help your daughter out. Those symptoms do sound like manifestations of celiac to me.

Celiac can be difficult to deal with, at first, but (if Ella has it), the vast improvements she will make on a gluten free diet will be well worth it.

[flagbabyds]

Your daughter for sure has to be tested because if she doesn't she will get deathly ill and really start being sick all the time. I would also suggest that you go to a ped GI doctor becasue they know what they are doing and if the doctor says I don't know, then just outright ask for the celiac pannel to be done. YOu could also ask her regular doctor to order the test and if they can't then ask for a referral to see a ped GI.

All of those symptoms are clues of celiac disease and should be taken very seriously. YOur daughter needs to be tested very soon, and DON'T put her on the gluten-free diet if you are planning to get her tested because it is very hard to see the improvements in your child and then make her go back on gluten and see her return to her sick state. Keep her on gluten if you are planning to get her tested, and if you aren't, then start the gluten-free diet now.

[Guest taweavmo3]

Sorry, I should have clarified my post about trying out the gluten free diet. Everyone else is right, keep her on gluten until you can get her tested. I did my little gluten-free trial before I knew much about celiac, and our GI appt was months away.

If you are going to take your daughter straight to a GI, do it sooner rather than later. Ours is usually booked up 3 months ahead of time, and cancellations are rare. Hope you get some answers soon!

[e&j0304]

Thank you all so much for taking the time to post. I am so glad I found this message board. I know that Ella doesn't have all of the "classic" symptoms of celiac (diarrhea, vomiting, nausea, not wanting to eat etc), but she does many other symptoms and from what I've read some people can have no symptoms at all so that's why I really feel like she needs to be tested for this.

Thank you for sharing your own personal stories because it makes me feel like I'm not alone and gives me hope that maybe there is something we can do to help her.

I have one more question. Is hair loss associated with this disease? Ella's hair seems to fall out really easily and when it is pulled out in clumps (by baby brother) she does not even seem to feel it. It's really strange. Just wondering if any of you noticed this with your children.

I will definitely ask for a full panel to be done on her. I am toying with the idea of taking her to a pediatrician in New Jersey who happens to be a family member so that he can do all of these tests and do them well. He is actually the first person who even mentioned that she may have this condition.

I am glad you all agree about the psychiatrist. We were shocked that it was recommended, but honestly we didn't really know what else to do until this condition and other tests were brought to our attention. There is no way I'm going to medicate my 2 year old with those types of drugs.

I really appreciate all the help. I have never been able to find any info on a 2 year old who won't stop eating and I've searched everything I can think of. I am almost happy to think that she may have this because then we can do something to help her.

Thanks again,

Shannon

[KaitiUSA]

Hair loss can come with it...I know people on this board that had that problem pre gluten free

[Carriefaith]

Is hair loss associated with this disease?

I had hair loss before I went on the gluten-free diet. Thankfully, the gluten-free diet stopped my hair loss. Hair loss is a sign of a lack of vitamins. You should definately get her checked for celiac.

[e&j0304]

I just have another question for you ladies.

Do you think that after I implement the gluten-free diet I can expect her to stop whining and crying about eating all day long? This is my biggest problem with her and the cause of all of our anxiety over this. I just wonder if she is still going to crave food or if she will crave the food she can no longer have even more than she does right now.

Today we went to a playgroup at a pool with a bunch of my friends and their kids and it was just another day of watching all of the other kids playing and having a great time and Ella wanting to keep eating all the snacks. She did have fun and was in the water for awhile, but kept getting out wanting more to eat after eating two huge paper plates full of crackers, fruit, pretzels, etc. She seemed to have a good time, but could only concentrate on fun for brief periods before wanting more. The other kids, on the other hand, were so wrapped up in swimming that they stopped once for a small snack (most of them didn't even finish it) and then they were off having fun. This is what I want for Ella. I just want her to have fun and not worry about eating so much.

Just wondering what you think... I am almost to the point that if I hear her ask me for food one more time I'm going to lose my mind.

Shannon

[KaitiUSA]

If she has celiac it will sure help her. Don't expect an overnight change though. For the symptoms to go away it takes time...for some it is longer then others.

[connole1056]

I think you have been given great advice here. I would go to a pedi GI. Maybe you could speak to the doctor or nurse beforehand and find out if they are familiar with and treating anyone with celiac disease.

As for the constant hunger, I know how you feel. My daughter has been gluten-free for about 6 years and is still hungry quite often. She was never as hungry as your Ella though. I would guess that she is hungry because she is not absorbing what she needs. However as I said, my celiac daughter is still always eating. I think it is because she just does not get enough carbs, which give the feeling of being full. She has always been small though and I do not expect she will ever change. She was under 18 pounds at one. However, she is very healthy and active. I mention this because if your daughter is a celiac she may still be small like mine. My non-celiac daughter is even smaller than the celiac, but also very healthy. The comments I hear about this are extremely rude. Are your other children small as well? I think there is so much obesity that people react strangely when they see a small child. So if Ella does not get bigger, and she is otherwise healthy it does not mean there are other problems.

As for the drugs, I would not put my child on them until I got to the bottom of the nutritional issues. I have known of cases where children were diagnosed with ADD and put on meds, only to find later they were celiacs. If she is a celiac and the problems go away then you can address that then. Some of the drugs used to treat depression and other mental disorders can be addicting. That is why I would wait. I do not have a problem with medicating children when neccessary, but I do have a problem with doing it because the doctor can't diagnose.

[anerissara]

I agree, you've gotten some great advice here. I just wanted to reiterate something mentioned above...eating constantly would only be a psychological problem if she were also gaining weight, but does *Not* suggest a psychological problem if your little one is still on the small side. She must not be properly digesting and absorbing nutrients if she's eating that much and still so small. This is clearly a case for a GI specialist, not a Psyc.!!! It makes me mad that you are not being listened to by your doctor Doctors should listen to Moms more, our gut instincts are almost always right!

Good luck with all of this, please let us know how she's doing even if it's not celiac disease. It's so hard when you have a little one with a problem!

[Merika]

Let me third fourth or fifth everyone's comments on the psych! This is what docs do when they run out of ideas. It happens at all ages. I was 19 when first presenting obvious celiac symptoms, the docs couldn't figure it out, and recommended a thorough psych workup (insert rant here). I was 19 and told them where to shove it

Merika

[e&j0304]

Thanks again for all of your replies. I am so happy to have found this board since I have received so much advice and support.

I am encouraged that Ella may be able to be helped with a gluten-free diet after hearing some of the stories on here. We have an appointment with her pediatrician on Monday to talk about testing, so hopefully we can get that going soon.

To the person who asked if my other children were also small: Not really! I have an almost 8 month old son who is over 20lbs. His hands are as big (and actually MUCH chubbier) than Ella's and his feet are just barely smaller. I think he may be about 2 shoe sizes behind her. Ella is 2.5 and only in a baby size 5.

I don't think it will be long and the baby will have outgrown her! Everyone always thinks they are much closer in age than they are.

Anyway, thanks again!

Shannon

[Guest taweavmo3]

That's the same for us. My little ones are actually two years apart, but are starting to look like twins. I get asked ALL the time "so, what's the age difference between them?" I know that's the polite way of saying "so, how quickly did you get preggo again?" lol. They are always shocked when I say two years.

There is only 4lbs and one inch difference between them, so not much at all. They wear the same shoe size and diaper size too. If Ben keeps growing like he is, he'll surpass his big sister Emmie. I'm crossing my fingers that she'll have a growth spurt soon though, poor thing still isn't on the growth chart for height, but she is finally in the 25% for weight now. Good luck on Monday.

[lbsteenwyk]

Shannon: Here is a link to some information that you may find helpful to encourage your pediatrician to test your child for Celiac Disease. This is Clinical Practice Guidelines for the Diagnosis and Treatment of Celiac Disease in Children, developed by the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

Open Original Shared Link

[Merika]

Laurie,

Interesting link. Can you believe the part that said only 45-80% of celiac disease children adhere to the gluten-free diet ?!?!?!?! OMG

Merika

[Guest taweavmo3]

Dh and I were talking about this last night, wondering how many parents really stick to the diet once they find out their child has celiac disease? It's really overwhelming at first, so there must be some parents who figure it's too hard or too expensive to keep up. It takes a great amount of effort, research and creativity, especially once you hit the school years, to provide a well balanced diet. It's not necessarily "hard", but definately more time consuming than usual. Most of us on here have taken the time to educate ourselves on the disease and products, and thankfully have learned alot more info. than the doctors could provide. If I had just gone on what the doc told me, I'd be glutenizing my daughter left and right!

Then there are those out there with old information. A couple of months ago I ran into a woman who said her daughter had celiac, but she "grew out of it". After we got to talking, I realized her daughter had passed away in her 30's from "something else".....but I'm guessing it was related to celiac. Pretty sad really.

[lbsteenwyk]

Interesting link. Can you believe the part that said only 45-80% of celiac disease children adhere to the gluten-free diet ?!?!?!?! OMG

Merika: Yes, I was surprised to read that. I can't imagine a parent who wouldn't make every effort to keep their child gluten free. But, I'm sure it gets more difficult as children get older and are able to make their own decisions about food. On the other hand, there is sooo much misinformation about celiac disease out there, and many parents of newly dx children may not be aware of how to get support and education about celiac.

[lisabp]

Just to let you know what you can or may expect after going gluten free (and get those tests done ASAP-have your family doctor call in the blood test to the lab or fax it over and go in tomorrow for that-it may take a week or so to get it back and then get on the cancellation list-it got us in a ,onth early).

My little guy was diagnosed at 19 months, distended belly, vomiting (stools OK) and no weight or height growth in 3 months. He was very clingy and did not eat so much because he was scared of getting sick (and probably feeling awful). But he was back to waking up every 2-3 hours at night for milk with Ovaltine since he was so hungry.

One week later his mood was incredibly better. One month later (after going gluten-free) he is eating like crazy again. Now it's 6 weeks gluten-free and his stomach is really starting to go down and he's sleeping (after eating for 45 minutes straight before bed) for 10-11 hours straight at night.

He is so happy all the time. He is not clingy and will let lots of people love him and play with him, not just Mom any more.