New Here...5 Y/o May Have Celiac?

Jenybeen · August 10, 2006

Hi everyone. I have an almost 5 year old son (Isaac) who has never had a solid bowel movement in his life. His old pediatrician dismissed my concerns saying my son had "toddler diarrhea". Our new ped (we switched 1 year ago) said that was just the way my son is...everyone is different. My son is shorter than all his friends, and his feet are as big as his 3 year old brothers feet. I know he has growth issues. I have just recently started putting the diarrhea and growth issue together. He also has severe food allergies to milk and peanuts.

Well, the bathroom problems with Isaac are getting worse...he goes 2-3 times a day, sometimes more. And just recently, when he has to go, he has to go NOW. He can't even wait for me to pull the car over at a gas station or something and he has had 3 accidents in the last month. He feels so bad, and I am so concerned at what the problem is. I was at the doctor with my younger son, and we saw one of the group partners instead of the normal doctor, so I asked her what she thought of the persistant diarrhea. She said it sounds like "Celiac Sprue", and REFERRED US TO A GASTRO. DOCTOR! Finally...someone is taking me seriously! It's taken 5 years for a doctor to tell me there may be something wrong, when all along I have known this isn't normal!

Isaac starts Kindergarten next month, and can you imagine how embarrassed he would be if he had an accident (poop his pants) because of having to wait to use the restroom? He would be devastated! I actually was able to get an appt with the Gastro doc for next week, and I am so excited about it. I want some answers! I have already taken Isaac back to the allergist last month to make sure the poop problems weren't stemming from an undiagnosed food allergy, and the only things that came back positive were the milk and peanuts, like usual (he's had those allergies since birth).

Sorry this is long...just wanted to vent and see if anyone has had similar issues with their child/ren, and see if you all think that Celiac could be the culprit for my son. Oh..and what should I expect at our first visit with the gastroenterologist??? Thank you!

Jennifer

Nic · August 10, 2006

Hi Jennifer,

My son is also 5 and was diagnosed a year ago at 4 years. His problem was the reverse, he was primarily constipated but would alternate with diarrhea. He too towards the end would accidentally poop in his pants. It is very frustrating because at this age you know they feel awful about it. From my expereince, the gastro. doctor will probably talk with you, examine him (I don't think anything invasive), and then send you for blood work. Don't forget, Celiac is not an allergy so when the allergist tested him for food allergies, wheat would not come up if it is Celiac. Based on the blood work you would then set up an endoscopy with biopsy. I know some parents opt not to have the biopsy and take the blood alone as diagnosis. My son did have the biopsy and he did very well with it so it is a preference. If these problems persist once he starts school I would suggest talking to the school nurse and the teacher and explaining that you are searching for the cause of this problem but in the mean time, he will need some special bathroom privlages. I am a kindergarten teacher and I would surely be helpful if he were my students so I am sure you will have no trouble.

Nicole

TCA · August 10, 2006

My son was the same as yours with pooping and growth. He had all the tests done 3 times and it was all inconclusive. He was 1-3 yrs. old. At 3 I decided to put him on a gluten-free diet and see what happens. The D stopped in 3 weeks. It was amazing. If he gets gluten accidentally it comes back with a vengence. He got some yesterday through CC at Chick fil a and had 2 accidents. He has no control when glutened. I am nevervous about him going to school, so I feel for you. If they do bloodwork, which they should, make sure they test for all 4 antibodies, EMA IgA, AGA IgA, EMA IgG, and TtG. Also get them to test his iron levels and and overall IgA deficiency test. I didn't know to ask for all of this and he had to have multiple sticks. Cole had 3 biopsies and none were too bad, but none showed anything. You have to make your own decision on that one.

I hope he feels better soon and you can get it under control before school. I have a food list for my son if you want it. Just PM me your e-mail address.

mommida · August 11, 2006

I just wanted to add to TCA's post, that the testing for Celiac can be inconclusive. My testing as an adult - was all negative from the doctor's opinion of my tests. You need to ask for all of the tests listed, print out the list and take it with you.

Even if the tests come back negative - put him on the gluten free diet AFTER the testing has been completed. If the blood tests are elevated, the endoscopy with biopsy will be the next stage of testing. Make sure they are going to take more than one sample. (Discuss this with the doctor, before the procedure.)

If you have any questions, ask them here first and be informed before you waste time with a doctor that is NOT up to date with celiac disease information.

L.

Izak's Mom · August 11, 2006

My son is about 13 months and for months 7-8 it seemed we were at the doc's office at least once a week. Diarrhea was his big deal too, although he doesn't have any growth issues. But when I say diarrhea, I don't just mean run-of-the-mill loose poop - I mean explosive, all-over-EVERYTHING, absolutely not diaper-containable nastiness that he'd be covered in. Seriously disgusting. We tried eliminating dairy & nothing happened, then my ped. suggested eliminating wheat - and voila, he had his first solid poop EVER. I soon eliminated gluten as well and he's been Mr. Regular ever since - except when he accidently gets glutened. Then it's back to the big D for a day or so. (REALLY big D - he got into something at my mother's house on Tuesday and Wed. morning his butt exploded all over the carpet in his play area...I'm talking a puddle of poop. ) We haven't had any blood work done yet and may not, since I think it involves having him back on gluten again and I just don't have it in me to deal with that kind of sh*t! (pun intended!) We are looking into Enterolab testing, as soon as I can figure ou thow to get my insurance to cover it...but honestly, for me the proof is in his response to the change in diet. Gluten = Poopin. Unless you really want to have the blood/etc. tests done (which I also understand can be very unreliable in children), why not try going gluten-free with him for a month? If the D stops, then it makes sense to suspect gluten is the culprit. There are all kind of posts on here about toddler foods & snacks - you'd be surprised at how much kid-friendly gluten-free food is out there. Good luck!