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Newly Learning About Celiac Disease - Could My 4 Year Old Have It?

Shondra

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Shondra Newbie
Shondra
Posted

Hi all! I've spent this evening googling different symtoms my 4 year old son has, and came across this message board after wondering if we could be dealing with Celiac Disease. He is very small for his age (5%), but the dr has always discarded this because I am small as well (I'm not even 5' tall; by far the smallest in my family). His weight is very low as well - the same as his 2 year old sister. He has night terrors almost every night, diarrhea every day... His dr wanted me to get him tested for "sensory integration disorder" because he is a very sensitive child in the tactile sense. I have no idea if that is relevant or could be related to C.D. or not... the poor child is just a very anxious kiddo overall. Anyway, I've already learned so much from just reading on this board, and hope that some of you may have some insight for me. On another note, could anybody tell me how involved the testing is, how long results take, and how much they generally cost? I'm ready for a diagnosis and treatment...yesterday!

Thank you!

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JennyC Enthusiast
JennyC
Posted
Hi all! I've spent this evening googling different symtoms my 4 year old son has, and came across this message board after wondering if we could be dealing with Celiac Disease. He is very small for his age (5%), but the dr has always discarded this because I am small as well (I'm not even 5' tall; by far the smallest in my family). His weight is very low as well - the same as his 2 year old sister. He has night terrors almost every night, diarrhea every day... His dr wanted me to get him tested for "sensory integration disorder" because he is a very sensitive child in the tactile sense. I have no idea if that is relevant or could be related to C.D. or not... the poor child is just a very anxious kiddo overall. Anyway, I've already learned so much from just reading on this board, and hope that some of you may have some insight for me. On another note, could anybody tell me how involved the testing is, how long results take, and how much they generally cost? I'm ready for a diagnosis and treatment...yesterday!

Thank you!

I'm still in the very early stages of the identification of Celiac disease with my son, he hasn't even seen the GI doctor yet. My son's pediatrician ordered a full blood panel for my son. I just got the bill yesterday and it cost $500, and I got the results in 5 days. I've read here that the official test is a biopsy, but this disease is spotty, so you may get a negative result even if your child has Celiac. I'm not sure if I will get my son biopsied, because after the blood work came back the doctor called and told me that my son had Celiac and didn't tell me not to start a special diet, so I all ready have. Biopsies are more accurate the individual is still consuming wheat. If you don't have health insurance, you should look into Regence BlueCross BlueShield, if it's in your area. It's by far the most affordable H.I. that I know of.

My son seems to have all the symptoms: chronic diarrhea, abdominal bloating, light-colored stools-that float, failure to thrive, poor sleep habits, and moodiness. I've read that Celiac can have different symptoms, or no symptoms at all. I would start with the blood test. Do the full panel to rule out other allergies.

Good luck with your venture. I hope you find the diagnosis soon. I understand your frustration.

RiceGuy Collaborator
RiceGuy
Posted

By far the best way to diagnose an intolerance to gluten is by trying a gluten-free diet. That is also the only treatment. Thankfully, neither of these requires a doctor.

So the question you need to ask yourself, is if you want blood work or other "official" tests to tell you to put your child on a gluten-free diet, or do you want to try it right now and see if it works. Keep in mind that all the best tests often can and do give false negatives. Plus the patient must be eating gluten to get the most accurate readings.

Many on this board have found the diet works even when their test results where negative. Still others prefer to get the testing done just for peace of mind if nothing else, though they'd like it to tell them what they already have found via the diet changes.

As for the tactile sensitivity, I did experience this when I was little, though until your post I never made the connection. Thanks for the additional insight!

Hope you find the answers you need to help your child.

e&j0304 Enthusiast
e&j0304
Posted

It sounds like your son could definitley have celiac disease or a gluten intolerance. I realize that the cost of blood work or other tests can be a consideration but if your insurance covers it or if you have the money to spend I highly recommend going that route. If the tests are negative you can always try the diet. However, if you try the diet first and then change your mind about testing it will be VERY difficult to get an accurate test. As a mother I know that I just wanted to do everything I could to get a diagnosis for my children. I felt as though they deserved to know exactly what condition they have. It's a personal choice and I completely understand that not everyone agrees with my decision. The tests are not bad at all. It is a simple blood draw to begin with and although your child will scream he will be fine when it's over. Both of my kids have had to have them many times and although never pleasant they get over it. We started having them when my dauther was only 14 months old so I understand where you're at. The endoscopy is was really easy. My son tolerated it without issue and I really haven't heard any bad stories about the procedure.

Good luck with whatever you decide. I hope your son is feeling better soon.

Shannon

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