Toddler With Celiac?

[ELB3345]

Hello all! I am new to this - my first post

I have a 3 1/2 year old son who was diagnosed with Celiac shortly after his second birhday - his symptoms were LOTS of vomiting and failure to thrive. He will be 4 in August and still only weighs 28 lbs. He is gaining slowly but surely and has been amazing adjusting to his diet.

I also have a son who just turned 1 who was born with a cleft lip and cleft palate. He is much bigger than my older son was at this age but he is still small for his age - 19 lbs 12 months old. (they were both 6 lbs when they were born and my husband and I are little people) I am concerned that he might have celiac because he eats like he hasn't eaten in days - all the time! My older sons gastro says that they only way to test for celiac in a kid under 2 is to do an endoscopy because the blood tests are not conclusive until age 2. I hate to wait until he is 2 and keep damaging his intenstines with gluten but I also hate to put him thrugh an endoscopy for no reason. He does have a large belly but not nearly as much as my older son did. He vomits some but I think it may have to do with his palate repair in January and he gag reflex. I can't connect the vomiting to gluten? Any advise?? Help!

Thanks!

Erica

[Nantzie]

Honestly, I'd try him on the gluten-free diet and see how he responds. Since there are no medications or treatments that the doctor can offer, the only thing a diagnosis gives you is a word on his chart.

Many doctors also recognize that not all gluten issues are classic celiac. So if your son improves and his doctor won't give a diagnosis of celiac without positive tests, the worst that could happen would be that he gets a diagnosis of gluten intolerance based on dietary response. Really, it's a to-may-to / to-mah-to situation. Not much difference at all.

Since you already know that it's in the family, there's a greater chance that it is celiac than someone with no known celiac in the family.

There are a lot of people here who don't have a firm diagnosis, so you'd be in good company here.

Welcome to the board.

Nancy

[gfgypsyqueen]

Keep in mind that two years old is not a magic number either. The tests are still not too reliable in young babies. If you can, look into Entero Labs. They do a stool test. Less invasive and many people swear by it when they can't get a conventional diagnosis.

The gene test (blood work) would be an option too. That would let you know now if the child even has a possibility of developing the disease. Might help in deciding to put him on the diet.

Good luck

[chrissy]

here is what i would do in your situation---i'd have a Ttg test run anyway on him, and if it came back negative, i would leave him on a normal diet and keep retesting him periodically.

[Kibbie]

My daughter was diagnosed at 18 months old via blood work and endoscopy. Knowing more about things now I would have done things a bit differently.

I'd go gluten free and see if that helps... if it does I'd have my Dr. order the cheek swab genetic test to see if she was a carrier of the gene (as far as I'm concerned a positive reaction to a gluten free diet and a positive on a gene test means that the child needs to be gluten free)

[ELB3345]

Thank you all for your help. A few questions - Is the Ttg test the blood test? I think I will try all the less invasive tests first and go from there. I am nervous to put him on a gluten free diet because when my first son was diagnosed they told me to keep feeding him gluten untill we had a diagnosis because if I put him on a gluten free diet the tests could be wrong...make sense?

Kibbie - does celiac run in your family? How did you know to test your daughter for it so early? What were her symptoms? How is she now?

[Kibbie]

Does celiac run in my family?

yes my grandfather was diagnosed with it 4 months after my daughter... my daughter was the first diagnosed case in my family

How did I know to test my daughter?

I didn't really, its a long story

1. My daughters symptoms (just vomiting) started suddenly one day she was fine and the next day something was WRONG

2. She vomited only at 4:30 am every morning... like clockwork, with no other symptoms of anything.

3. Her Pedi. was slightly concerned about a brain tumor but didn't really think that is what it was, she though it was most likely allergies so for a weekend we had her on MASSIVE allergy meds to see if that improved her.... it dod not

4. The Monday after the allergy med trail I called first thing in the morning and told her it didn't work. She asked me where I though the problem was coming from... my gut opinion. I told her that I was convinced it was a stomach thing and not a brain tumor. So she wrote up a referral to a Pedi GI (Same practice as a Pedi neurologist)

5. The Pedi. GI was also slightly concerned about a brain tumor and ordered an MRI, and Upper GI, and a ton of blood work. She told me as we left to go te the blood work done that most of the time she sees cases like this... there is nothing wrong... that its just part of growing and that she will grow out of it.

6. The day before the MRI I got a call from the PEdi GI's office and was told "We have the blood work back and know what is wrong; Your daughter has an autoimmune disorder" we no longer need to do the MRI or the Upper GI. I had to ask what it was... thats when they said Celiac disease! I had never even heard the word before that moment! I was freaked out by the word autoimmune but was glad to hear that it was a diet change! At that point anything was better than Brain Tumor

What were her symptoms?

Just vomiting.... the day she had her biopsy we could finally see some belly bloat and she had dropped considerable weight... but at that point we had already seen a positive on the blood test! (The time between the first vomit and the biopsy was under 4 weeks... at her 15 month apt she was in the 98% for everything her 18 month apt was the day before her biopsy and she had dropped down to the 50% in weight) So she had other symptoms but they came after we knew what was wrong. She was a bit more clingy and crabby but she was also getting molars at the same time so who knows what the cause of that was!

How is she now?

Completely and totally normal and healthy! 3 months after being gluten free her bloodwork showed nothing, by her 2 year apt she was back to her normal place on the charts. She was 36 inches and 33 lbs at 2 years old! I feel so lucky that we were able to catch this so early! I think early diagnosis made a HUGE HUGE difference in her recovery!

Also I have become a better cook and baker and I LOVE trying random things out and impressing my friends with my "concoctions" We have gone to a 98% gluten free house (the only gluten we buy is bread for my husbands lunches and beer) but anything we we at home is gluten free! I know we are eating much healthier now