Could This Be Celiac?

[jenndoss]

My daughter just turned 2 and we have been dealing with her not gaining weight since she was 9 months old. She was growing fine until then and suddenly she dropped from the 25th percentile to the 3rd and since then she keeps dropping. Sometimes she will show some gain but then the next time she is checked she will drop again. Last time the Dr. charted her she was in the negative 5th percentile. She used to have frequent loose stools but in the last 6 months they are more solid and only one or 2 per day. I do not know if they float because she refuses to poop in the potty. A nutritionist friend who has been helping me for a long time called today and said I should have her tested for celiac. She doesn't vomit or anything. I am not sure if just not gaining weight could be celiac. I welcome any comments or suggestions. Thank you in advance.

[CeliacMom2008]

Unfortunately, it often seems that almost any symptom can point back to Celiac. Diarrhea, constipation, throwing up, no stomach symptoms, etc. And yes, the symptoms you've described definitely sound like they could be Celiac. I'm sure there are many other things that it could be, but I'd definitely talk to your doctor about Celiac.

[jmjsmomma]

I would definitely discuss it with her doctor. My 5 yo had no symptoms other than failure to thrive and a distended belly.

[MELINE]

For 29 years I had no symptoms at all...so check it out just to be sure...After all you have nothing to lose.

Hope everything will be just fine.

Meline

[jenndoss]

Thank you all very much. We have done blood work and allergy testing and even tested for Cystic Fibrosis. But no blood work for Celiac. We have a pediatrician weight and height check next Tuesday so we will discuss testing with our pediatrician. My friend said if the Dr. doesn't want to do the test I could just go straight to either a GI Dr or an endocrinologist and request an appointment and testing. She even said I could do 2 weeks on gluten free diet and see if I see a marked improvement. What kind of behavior symptoms do Celiac kids have when eating products with gluten? Because recently she has become really difficult and I assumed it was just because she is 2 but now I am wondering if could possibly be related. I appreciate the responses.

[jmjsmomma]

Thank you all very much. We have done blood work and allergy testing and even tested for Cystic Fibrosis. But no blood work for Celiac. We have a pediatrician weight and height check next Tuesday so we will discuss testing with our pediatrician. My friend said if the Dr. doesn't want to do the test I could just go straight to either a GI Dr or an endocrinologist and request an appointment and testing. She even said I could do 2 weeks on gluten free diet and see if I see a marked improvement. What kind of behavior symptoms do Celiac kids have when eating products with gluten? Because recently she has become really difficult and I assumed it was just because she is 2 but now I am wondering if could possibly be related. I appreciate the responses.

She could "just be acting like a two year old" ) Two year olds ARE difficult. I can say this because I've have one currently (negative for celiac disease) and lived through it twice before. HARD STUFF!! If you decide to do a trial gluten-free diet, make sure you do not get tested during that time. Baby needs to be on gluten for the test to be close to accurate. My sons endocrinologist is the one that ordered my sons celiac panel. My son never had any of the behavior symptoms sometimes associated witih celiac....he is firstborn, pleaser, happy kid that just happened to stop growing and had the odd belly ache.....

[jenndoss]

Ok, so I actually have 4 children, none of the others have had any weight problems or anything like that although my oldest has eczema and my son has asthma. I am not sure about starting my 2 year old on a gluten free diet without Dr approval because she already isn't gaining weight and I am not sure about my ability to give her enough calories on a gluten free diet and if it isn't celiac and she loses more I am afraid she will get sick. As it is now I have to supplement her with Pediasure everyday to try and give her more calories. (although we did a calorie analysis with a nutritionist and she was getting more than enough for even catch up growth) . At this point in a 6 month period she has gained only a pound and in 14 months she has gained only 4 pounds from 10 months old til now. She still has not tripled her birthweight and does not have all her teeth as of yet. She does have a lot of gas but it doesn't seem painful. She laughs about it. If this does come back as celiac disease I will need a lot of information on how to give her enough calories without gluten. I have never had to work to make sure my kids got enough calories. My first 3 gained on schedule, ate when they were hungry and have been fine. I hope I can get an answer one way or another. Thanks again!!

[ang1e0251]

You won't have any trouble getting her plenty of calories going gluten-free. After all, you're only cutting out gluten. Protein, fruits and vegetables are all good. She may be able to eat dairy also. Once she's started on the diet there are many alternatives grains she can partake in. The difference will be she actually gets to retain those calories instead of them passing her by. It does seem a monumental task when you first hear about the diet, but it gets easier as you practise it and you'll be so grateful to have your precious one healthy again.

[Pattymom]

It's also my fourth child who changed everything like yours, not growing and such. I would make sure you get tests done before your take her off gluten, it will make it easier to get an answer, especially if you see improvement off of it, and then you try to put her back on to confirm with blood test, etc. It's really hard to make things worse after they have gotten better.

My dd, now 4, also had lots of gas and thought it funny rather than painful. In fact, all the kids were so gassy before gluten that I now have a house full of kids who love fart jokes-it was the only way to get through the evening sometimes. good to have something to laugh at (ie. we were just learning states and capitals--capital of ketucky--frankfart. They are continuous--gluten free has improved the actual gas a lot!)

Patty

[taweavmo3]

Yes, definately get her tested for Celiac! My dd never had diarrhea or vomiting.....her main symptom was lack of growth or weight gain, and irritability. I was often told by family and doctors that she was just going through terrible two's, but I knew it was something more. She did have large, bulky stools that were quite foul smelling, but never diarrhea or vomiting like you hear sometimes. Kids can exhibit symptoms in so many different ways.

At the very least, it sounds like your daughter isn't absorbing the calories she is taking in. My dd would eat a huge amount of food, yet always be hungry. Once we started her on the diet, she began having a normal appetite and would fill up much quicker. If your dd does test positive for Celiac, calories really won't be an issue b/c she'll finally be able to absorb what she is taking in. But if you need any help, there are loads of people here who know how to get in the good, healthy fats to beef kiddos up! Good luck to you!

[CMG]

My daughter dropped from 75th percentile to 3rd in about 18 months (1 1/2 to 3 years); tummy aches, aches and pains, hyperactivity, irritable, pale skin, dark circles under her eyes. We had her tested for celiac at 4 1/2 when she started losing ability to control her BMs. Blood tests were negative and I did not request and endoscopy. I put her on a gluten free diet and the intestinal distress disappeared, all the aches and pains and tummy aches were gone within days. Over the next few weeks her behavior settled down and there was a new spark in her eyes. Every time I let her stray from the diet, all the symptoms reappear. And most significantly, after about a year and a half gluten free she is back up to 20th percentile.

If I were you, I would get the testing done, then I would try gluten free regardless of test results.

I wish you well -

CMG

[jenndoss]

Thank you so much. We have been looking for answers for a year now and I feel like this is it. She has started the hyperactivity recently and it is driving me crazy!!! She can't sit still at all and is making horrible messes. She can't have a drink anymore because she spits it all out one mouthful at a time. She used to be so content and calm. Now its out of control. I am going to get her tested whether my ped agrees or not. Our ped has been great so far but she still thinks in the back of her mind that its just a calorie issue. I know it is not. And my DD has periods of being incredibly hungry but doesn't really end up eating much. So far it has only been her weight but recently she is suddenly half a head shorter than every other child we are around who are the same age. A few used to be the same height and similar weight as my DD and now they weigh quite a bit more and are taller. I am afraid that when we see the Dr this time she will have fallen on the height chart too. I can't wait for her appointment so I can take her and get the test done so we can go gluten free. I know that it will be hard at first but I am so encouraged by this website that I know we will make it. I don't know if my husband will go along with the gluten free if the results come back negative though. But my next stop will be a GI dr. or an endocrinologist if we get no results or cooperation from our pediatrician. I have already decided that if she has to be gluten free then we all will be. My 12 year old is refusing , she says she will get the stuff other places already .So I may need suggestions if/when we make the change. You guys have been so helpful!! Thank you thank you.

[Pattymom]

My 12 year old is refusing , she says she will get the stuff other places already .So I may need suggestions if/when we make the change. You guys have been so helpful!! Thank you thank you.

[jenndoss]

Ok, so I have some questions. I am probably jumping the gun because we haven't even seen the Dr yet but here goes. So Celiac disease is like an allergy except the response the body has? In an allergy there would be a histamine reaction and in Celiac the body attacks itself? Am I getting that right? Also, if her blood work comes back positive for the antibodies does that mean she is Celiac? I mean are there other things that would cause that? And if so then what is the point of putting her through a biopsy and making her sick again after we go gluten free? Is there a benefit to being diagnosed for sure? What happens if we do not do the biopsy? Will the Dr ignore her condition? I just don't know why we would put ourselves or our children through the biopsy if it doesn't really make a difference. I just want to figure out what our plan is. Thanks for helping me understand this.