1st Born - Extremely Worried

[Doug1]

Hello,

Our first born - who just turned 4 this month - has had us very concerned and even more so after my wife did some research on the web and read about celiac disease.

Our son was small when he was born and while we have seen some growth there are factors we are very concerned about and fear he may have celiac disease - we know symptoms of celiac disease greatly vary which is why we were hoping anyone would take a look at the following and offer any worthwhile input - we know not everyone on these message boards is a doctor but many of you have so much experience with celiac disease that anything you can offer as input would greatly be greatly appreciated:

1) he was small kid at birth - 6.4 lbs - his height and weight as a 1 year old were average or slightly above but now at four he easily fits into 3 year old clothes

2) presently as a 4 year old he is 27+ lbs and about 36 inches tall - his younger brother who is 2 next month has already passed him in terms of weight (29lbs)

3) he has never been a great eater - always ate lightly - occasionally he eats one big meal a day but his younger brother (2) out-eats him by a mile

4) he frequently has gas and will poop about 4-8 times a day - not always large stool, sometimes it's hardly anything - occasionally diarrhea but usually normal consistency - often times it's pale and floats

5) he does not lack energy or lack concentration by any means

[KaitiUSA]

It's worth getting him checked for it. Some people get no symptoms at all and symptoms vary from person to person. There are over 200 symptoms that can come with celiac so it can be very tricky.

The first step is a blood test and this is what he should be tested for.

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

He should also probably get a gene test...98% of celiacs have the HLA-DQ2 or HLA-DQ8 gene

The xray is probably to see if growth has been delayed and see what his bones look like.

As for the biopsy...they usually use this to diagnose celiac after a positive blood test. I did NOT have a biopsy done because my blood tests were proof enough for the doctor and I had one of the main genes too. The tTG and EMA are pretty specific for celiac. Also if there is not damage to his intestines yet or only sporadic damage then the biopsy can come back negative.

Also I would consider getting an Enterolab done. www.enterolab.com

They use stool samples to test for gluten sensitivity, the genes, malabsorption, and so forth. This is not widely accepted by the medical community yet but is a great test and very helpful.

Good luck with everything

[jams]

Just to add one more thing... You need him to eat gluten if you are going to have him tested. If you have him on a gluten-free diet before testing, you will not have accurate results.

Good luck!

[Doug1]

Thank you both very much.

There is no history of celiac disease in the family but there are so many possibilities that he may be the first to show true signs of this.

Thank you,

Doug

[KaitiUSA]

Just because their is no known history does not mean it has not been in the family. It just may not have been detected. This is a very underdiagnosed disease so it could very well be in the family and nobody know about it...if your son does have it it's better to find out now then later.

[steadyed]

Doug,

Your son's symptoms are amazingly similar to mine during my first two years. I had little or no weight gain, stunted growth, diarrhea or floating stools (which I still occasionally get), and looking completely and utterly malnourished. And I ate and ate and ate. Yes, he should get tested. ( I never was tested-- they weren't available way back then and now it seems superflous.) My son Thomas, who will turn 3 in a few weeks, is about ten pounds heavier than your son already.

Good luck,

Ed

[CMWeaver]

Doug,

This situation is identical to what we experienced with one of our girls. Ironically, she was the larger twin, almost 7 1/2 lbs. She grew at a somewhat consistent rate (nothing causing concern) until about 2 1/2. She weighed 27.5 lbs for over 1 year! We went to the doctors a few times. Initially, we were told to increase her intake......then to change her vitamins. Finally, just before her 4th birthday, she forgot to flush one time and I noticed a sandy colored stool. I noticed she had to get up from the table and go to the bathroom many times a day. Her skin looked fine with the exception of the beginnings of dark circles under her eyes. I finally told the doctor that I would like some blood testing since everything we have tried hasn't worked. She did the blood testing which came back positive. We were referred to a GI who did the biopsy and confirmed celiac.

The only reason I wrote all of that was to say that in 4.5 months of being gluten-free, she's gained 6.5 lbs! She is so much healthier! It's definitely worth getting him tested. Fortunately, the blood testing comes back relatively quickly and you can make a decision from there. As the others said though, it's so important for gluten to be eaten each day until testing is complete. It is hard to do if you believe it is making him sick but hopefully everything will go very quickly and if he is celiac, he can get to feel better soon.

Christine

[Rikki Tikki]

Doug:

If I were you I would have him checked. I have not found another member with celiac but it presents in so many different forms they may not of been diagmosed correctly. I believe that if the blood test shows positive for celiac there is no need for the biopsy. He does need to have ingested gluten prior to being tested unless they look for the specific gene.

Best of luck to you.