7 Year Old, Symptoms And Blood Results

[babygrant]

My son is 7 years old and has had gi issues since birth. Since his very first bm. As a baby he would scream and scream and scream, fart and explode. Diaper full of loose, disgusting, mucousy poop. He was strictly breast fed till 9 months and then started him on solids. Constipation and mucousy diarrhea followed. He would be so constipated after just a day or two it would tear his rectum. we would bring him to the doctor, nobody would listen. We would bring him to emergency after 2 weeks of no bm's and they'd give him an enema and send us on our way. This child has had more enemas and suppositories than I can count. He's been on senna, lactulose, peg3350, high fiber etc etc. we were always told it was normal blah blah blah. We noticed after he ate bread he hecame a holy terror. He'd also complain of or pain and itchiness at night. Screaming, yelling, sad, etc so about two years ago out of desperation we pulled him off gluten. The change was amazing. No more temper tantrums about nothing, no freak outs, no night terrors and leg pain, and we could take him off the laxatives! Finally we found a pediatrician who would listen. She wanted to do a celiac test so we had to put him back on gluten for 6 weeks. He cried for the first 3 weeks cause he didn't want to eat gluten. We struggled to even get a few bites of sandwich into him midrib that time we had to put him back on peg3350 and senna at night. That was just to keep his stool able to pass. Leg pain scale back and the complete break downs and mood swings came back.

So today we had check up with the ped. His tissue transglutaminase ab iga came back at 13.7 normal being 0-20. The ped says although he is not textbook levels for celiac she believes strongly he does have it. She said in her experience when a non-celiac gets that blood test they always come back less than 5. She thinks because he wasn't eating the equivalent of 2 slices of bread for 6 weeks the results may be skewed. She mentioned a biopsy but strongly suggests against it until he's in his preteens and can do the adult scope.

So my questions, does this sound normal?

[mushroom]

Normal? No.  Normal for celiac, yes; totally.  Constipation, diarrhea, messy poops, pain, meltdowns and other behavior issues, absolutely.  You have a wise pediatrician (a keeper ) who recognizes that he probably was not eating enough gluten to produce a full celiac antibody response.  I don't know if I  agree with not doing the biopsy.  He is old enough to handle the procedure well and it will probably be his best chance to get a measure of damage.  To have it done later he would have to resume eating gluten for at least 6-8 weeks which he is most unlikely to want to do (and you probably wouldn't want to be around him while he did it ).  I doubt that he would last the full challenge.  I am not aware of the considerations between a "child scope" and an "adult scope" which would affect the decision of whether to scope or not at this point.  Perhaps you could clarify this with her.

 

Welcome to the board and feel free to keep asking questions.

[babygrant]

He is back off of gluten now. Has been for about two months since we did the blood work. So we would have to put him back on gluten again if we did the scope.

We cannot get a scope done here for him. It would require a trip to the children's hospital 8 hours away and they will only put him completely to sleep for a scope and biopsy at this age. If we wait till pre-teen years we can get scope done here and under twilight sedation. This ped really advocates for the child and she just thinks he's too young right now to understand the whole prodedure and its too invasive. She thinks that because he does soooo well without gluten and with the blood results why do we need a piece of paper to say yes, he has celiac. She just thinks keep him off gluten since its working, scope when older.

[mushroom]

So is she prepared to write a lettter stating that he must not be exposed to gluten, since he will come in contact with it constantly in the school system?  Unless you are a homeschooler?  This is the reason you need the piece of paper!  Because it's so hard to keep a child gluten free outside the home without a diagnosis   and without making them understand the necessity for it.

[babygrant]

The teacher and school is completely on board and has been since he went off gluten. Theres actually a couple kids who have celiac. All kids in the school pack their own lunches and I pack him his own treats for parties etc.

[tarnalberry]

The dietary test you've already done is a valid diagnostic test, and - as far as I can tell from what you've written - has given you guys a VERY clear answer.

[frieze]

hopefully they will have the in vitro testing by the time he is that age.  I, frankly, wouldn't want to be around a pubertal male with these psyc symptoms!

[babygrant]

Psy symptoms?

[Takala]

= Behavior changes caused by gluten, i.e., the meltdowns.  Young teensters & toddlers.... aie yee yee.   

[babygrant]

Lol oh ok gotcha. He is an amazing child sans gluten. But when we had toast him eat it prior to blood tests I wanted to sell him to the circus!!! He would freak out and be crying next minute apologizing. Said he just can't help it. Poor guy.