Oh No, Not A Newbie!

[AnObstinateOne]

Hello all,

I hope you guys can endure another newbie with no solid diagnosis.

I've been reading the boards here for a few weeks now, and while I found a lot of answers, I still have some questions.

My 1 year old is now in the process of getting SOME kind of diagnosis. She has fallen off her growth curve, has some very questionable diapers (ok, they were really, really gross), and has popped up with reflux.

The peds ran some tests, and definitively diagnosed steatorrhea. They also did a blood celiac panel. All of those came back negative (no gene tests were run, and I see now that the panel is only so-so for kids under 3?).

We saw a gastro last week, who ordered a CF test and some stool tests for parasites. They said once those came back negative, they'll call me with a date for an endoscopy. Wow. That was quick?

So, my questions relating for this child are:

How young can they really diagnose these kids? At not yet 1.5, I'm hoping we're shaving off months/years of discomfort and slow growth. Anyone else able to get a real dx at such a young age? How soon did you see changes?

Does the steatorrhea go away? Do I get to relax and not dread diaper changes on a gluten-free diet? Could I even sell my stock in Pampers?

And a follow up:

I have a 3 year old who was dx with steatorrhea just last Marchish. I was concerned since the kid hasn't grown AT ALL in more than one year, and because of his nasty diapers. His weight was fine, he's not gained any, but he's always been a big baby. And when I say big, he was off the charts by 3 months, but by 3 years, he's 25%. They ran a full celiac panel, complete with the genes. He came back borderline TTG positive, but negative for DQ2 and DQ8. So his gastro (who is different from the babys GI), told me that he is sure Boy doesn't have celiac, but NOT to alter his diet at all, as an endoscopy could be in his future. His poo hasn't changed, although he potty trained and it's no longer "in my face", so to speak. I guess where I'm going with this is, how likely is it he could be celiac disease? I asked new GI about the results, and they said that any TTG being positive is abnormal, and the genes are only good at screening about 95% of the celiac disease population, so there is a possibility, and they would be happy to see him.

If you made it through my ramblings, I thank you. If you have any experiences to share, I thank you twice!

And if I posted this in the wrong place, my apologies.

[Guest j_mommy]

First off welcome!!!!

Second I would take your boy to the new gastro and have a new work up done!

I have been dx'd with celiac, but my son has tested negative(he'll be 3 next month) he however has alot of the symptoms!9Just like I did when I was a child! He is gluten lite...only gets gluten at daycare and that has improved him sypmotoms a bit!

I really(personally) don't think Drs have alot of luck with testing young childern!

Hopefully others have more to offer!!!

Welcome again!

[zarfkitty]

I think the mainstream medical focus on DQs 2 & 8 isn't really on target with actual clinical reality. Several threads have come up here about people with "gold standard" diagnoses who are negative for "celiac genes." So if it were me, I'd ignore the "negative" gene test.

My daughters symptoms started after potty training, so it has never been "in my face" but she did have steatorrhea (as dx'ed by enterolab) but her stools seem normal now. Of course I don't know the fat content, but they are solid and don't float anymore, so I imagine they aren't fatty.

If your younger kid gets diagnosed, I'd put the older sibling on the diet without a diagnosis to see what happens. We always say here that you don't need a doctor's permission to do the diet! (And the corollary to that is that our diet isn't dangerous, even if it turns out not to have a benefit, so there's nothing to lose!)

[Virgie]

Hi! So sorry to hear about your little one !! It is hard to watch them be sick and not growing.

Just wanted to know if they have done any tests to rule out Crohns Disease or Ulcerative Colitis?? My son has UC and at first diagnosis he had only grown 1 inch in a year and gained 3 lbs. at the most & that was when he was 14 years old and should have been growing by leaps and bounds. He was about a foot and a half shorter than everyone in his class. He also had bad diarreha (muscus, slimy, very gross). He had many of the blood tests and stool samples done and everything was negative. Finally did a colonoscopy and they discovered that the UC as his entire colon was inflammed, bleeding, etc. So even though we hate the prep for the scope if they are doing an endoscopy I would maybe suggest they do the colonoscopy at the same time. I think I am going to suggest that for my daughter when she goes to Mayo next week for her appt. They plan on the endoscopy on Thursday & I am going to ask if a colonoscopy should be done being her brother has UC and also because of the bloody diarreha that she has been having. Again we hate the prep but it helps your piece of mind to know for sure.

Hope you can find some answers .

Virgie

P.S. Now with the proper treatment my son is 5'8" so he grew a foot in 3 years. My hubby is only 5'9" so son might not make 6' anyway but at least he is growing now.