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Wanted To Introduce Myself

mommy2twoboys

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mommy2twoboys Rookie
mommy2twoboys
Posted

Hi everyone,

I am kind of new here. Actually I have been reading the wealth of information on this site for a few months now, and I am so grateful for you all. I don't think I would have made it through the past few months without you all. It's nice to have a place to come where most of the questions I have are already being asked.

I just wanted to introduce myself and share my story.

My 2 year old baby boy was a very sick baby for a very long time. He had this awful diarrhea for over a year, bad diaper rash, a big belly, he was losing weight and not growing at all. He was always tired and never played. The Doctors kept saying his diarrhea was from all the antibiotics he was on. From very early on he had trouble with Croup, Asthma, Bronchitis, Pneumonia, he is hearing impaired (born without ear canals) so after many trips to the doctor, we begged them to run tests. They tested his stool...everything was fine. They suggested toddler diarrhea, and said feed him lots of fatty foods and so on. They said if he doesn't gain any weight in 3 weeks we will test him for Celiac. I had never heard of this. I decided we couldn't wait 3 weeks and they tested him the very next day. A few weeks later we got the call and he was positive (blood work) we meet with a Ped GI and they said his numbers where so high that they didn't need to do a biopsy. We started a gluten free diet that day. My goodness what a different child!!!! He plays, he laughs, he is talking, no more diarrhea, and no more big belly. He has gained 6 pounds since going on the diet and grown 1 inch. It is truly amazing to me. He is finally healthy and I have my precious little boy back!!! :) He has been gluten free since the end of September 2006.

I still find it very challenging. We are almost a gluten free household. Working on hubby and my 5 year old. I was tested and my blood work came back negative. I am going to have our 5 year old tested. He doesn't seem to have any problems but is very very thin!! Again it has made such a difference in the baby...and you can tell when he has gotten some gluten. He becomes very sick and very irritable almost immediately.

Well I did have a question...he is always hungry...he eats eats eats...doesn't seem to get full...does anyone else have this issue?

Sorry if this is so long!! Again thank you all for all your wonderful advice!! This is truly a great place to be!!!

Suzanne

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JayT Rookie
JayT
Posted

Good to hear he is doing better. I am new to this site too but have been Gluten Free for over 10 years, so feel free to visit me for questions...but then again, there are about 7000 other people on this site always willing to help too. :-)

Canadian Karen Community Regular
Canadian Karen
Posted

Wow! What a wonderful story! That just made my day! I love to hear success stories like this one!

Don't have much to add, since it is me who has celiac, not my children, but wanted to welcome you to the board and I'm glad you jumped in and decided to post! There's a great bunch of really caring, knowledgeable people on here.....

Hugs.

Karen

Guhlia Rising Star
Guhlia
Posted

Welcome welcome welcome! It's really nice to hear others' stories. If you go to get your other son tested, keep in mind that if he's already mostly gluten free that it will likely show negative results. You have to be eating quite a bit of gluten, I believe, for the test to come up positive.

As for your little Celiac's hunger, perhaps his intestines aren't completely healed yet and that's why he's still very hungry. Also, toddlers that age are generally little eating monsters if you can get them to slow down long enough to eat. I would mention it to the doctor at your next check up, but it seems to me that this is probably relatively normal. Especially since he was underweight and not growing before diagnosis. His body is probably struggling to make up lost ground.

Welcome also to JayT!

FeedIndy Contributor
FeedIndy
Posted

Congrats on finding the solution to your little one's problems. Constant hunger is my middle child's prominent symptom. I didn't think much of it until she went gluten free and suddenly ate a normal amount of meals. Now when she get accidentally glutened she can't seem to stop eating the entire next day.

TCA Contributor
TCA
Posted

I'm so glad to hear your success story. Most of us have similar ones and know that feeling of complete relief to finally have an answer in hand! My son ate tons for a while, but now it kinda comes and goes. He's been gluten-free for a year now. I wouldn't worry. Kids eat when they need to, usually. Unlike we adults who eat out of boredome sometimes! We finally just went gluten-free here at home b/c the cc issues were a nightmare with 2 kids. You may find doing that might help with his hunger. There's a list in my sig line about getting started. You've probably already gotten all that info, but wanted to pass it on just in case.

Welcome!

happygirl Collaborator
happygirl
Posted

Hey Suzanne,

Welcome to the board....we are happy that you have been reading and decided this was a good place to "be!"

I think you'll find a lot of knowledgable people on here, and will get great support. You are right, the diet is challenging, but luckily, it *does* get easier with time. I refer to it as a steep learning curve, but then once you get it, you get it. There is maintenance, and ingredients/labeling laws change every so often and you must keep up on it, but the beginning is by far he hardest. (Not fun though, when you are overwhelmed).

Your kids are lucky to have a mom like you, esp to demand to be tested right away so you can "move on" to getting your son better!

All Celiac experts recommend that ALL first degree relatives are tested (full blood panel) for Celiac. You, husband, and 5 year old--As it has a genetic disorder, it could be any of you that have it. It could be none. Also, you don't have to have symptoms to be a Celiac; there are asymptomatic individuals (referred to as "silent Celiacs") that have increased bloodwork and total villous atrophy in the biopsy. It is amazing that two people can have this disease, and yet have such different symptoms. So, even if you all test negative, it is recommended to be periodically tested, as you could still "get" it (many people are diagnosed with celiac disease as adults, that didn't have it as a kid)...and definitely be tested if there are any symptoms.

Best of luck, and let us know what we can do to help!

Laura

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dlp252 Apprentice
dlp252
Posted

Hello and welcome!!!

blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi and Welcome,

I am glad to hear your baby is doing so much better. It sounds like he has come a long way in just a few short months. Congratulations!!!!!

Juliet Newbie
Juliet
Posted

My son was also diagnosed at two, and once we started giving him gluten free food he went from barely eating to eat a ton. He didn't start tapering off (but only barely - he continued to eat more than he did before he was diagnosed) until almost 6 months later. And during that time he went from 25th percentile in weight and 40th percentile in height to 75th percentile in weight and 90th percentile in height (his dad is 6'2" and I'm 5'9", so being that small didn't seem to fit the profile). I think his body was just making sure he had enough fuel to grow that much. He also started building up his muscle mass which he lost when he was getting really sick, and muscles burn more calories. Within 6 months, his numbers were all within the normal range, too, so I don't think it had as much to do with damaged intestines as just a boy trying to get back to where he should be :) I'm glad he's doing so well!

mommy2twoboys Rookie
mommy2twoboys
Posted
  • Author

Thank you all for your warm welcome!!!

I am learning so much from you all. Being new to this has been a bit overwhelming but because of all of you and this great site it has made things alot easier. I hope that through this process my family will grow and hopefully I will be able to help someone else out there. I am very blessed that we have an answer to all his problems and I am greatful that we as a family will be healthier for it.

I hope you all have a wonderful day...and pray for those of you that are caught in this crazy weather...I hope you are staying warm!!

squirt2476 Rookie
squirt2476
Posted

Hi-

My 2 year old son was also recently diagnosed, but I am having the opposite problem with him in regards to eating. He still does not really want to eat anything. It has been two weeks today since the biopsy and going gluten free, and so far we have seen very little change in him. He still has no appetite, no energy, and is just not himself. We'll see little glimpses of our old Matty, not not too often. Did anybody else have this situation? It's very frustrating because he is still so skinny and we want him to start eating, but I think he still has a negative association with food. If anyone with a similar situation can share how long it took for their little one to start feeling better it would be great. Thanks!

Keri

mommy2twoboys Rookie
mommy2twoboys
Posted
  • Author
Hi-

My 2 year old son was also recently diagnosed, but I am having the opposite problem with him in regards to eating. He still does not really want to eat anything. It has been two weeks today since the biopsy and going gluten free, and so far we have seen very little change in him. He still has no appetite, no energy, and is just not himself. We'll see little glimpses of our old Matty, not not too often. Did anybody else have this situation? It's very frustrating because he is still so skinny and we want him to start eating, but I think he still has a negative association with food. If anyone with a similar situation can share how long it took for their little one to start feeling better it would be great. Thanks!

Keri

Keri,

I hope things get better soon!! In the begining I remember going through my kitchen and throwing everything out and running to the grocery store in search of gluten free foods that a toddler would eat (most are picky) :) the first time I was in the store for almost 3 hours...in tears the whole time. I pretty much at first gave him things like gluten free pancakes and he eats lots of yogurt and pudding, string chesse and of course his favorite french fries. He also enjoys the gluten free cerals dry just like Cheerios. Since we don't eat fast food anymore our Sat. lunch is fast food at home with chesseburgers, chicken nuggets and french fries...(all gluten free) I even give the kids a treat like they would get in a Happy Meal. I know it is really hard. I also had to take him off regular milk and now he drinks lactose free and seems to be better with that.I hope your little Matty starts feeling better real soon. I am sure there are lots of people on here that will have lots of good advice for you.

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