We Saw The Pedi....how Frustrating!

[Celena]

So, i just got back from the pedi with DD1 and DD2. and i am pretty frustrated by it all. i guess it wasnt all bad tho. he is going to run some tests (tho not all the ones i would have liked). here is what he ordered:

for DD1 and 2:

-stool for C&S, D&P, leukocytes, fat globules

-CBC, AST, ALT, albumin

-anti tTG, IgA

for DD1 only:

-abdominal x ray

-rx for PEG (for constipation)

Ok...so not too bad. better than nothing i suppose. but i wanted the full celiac panel of the 4 tests not just the 2. i specifically asked him about the full panel and quoted what was recomended by the columbia university celiac center and he said 'well...was that specifically for kids?" and i said i didnt know and he said that the tTG and IgA is the most reliable predictor in kids. anyone know anything about that?

he said to wait another couple weeks on G before going to the lab for the testing. that is prob a good idea. but they will still have been on G only 6 weeks again then so who knows if the tests will be accurate or not. he said if the test comes back high normal then he still refers to pedi gastro spec. and that is good but he also said that the test was quite accurate. and that isnt what i have read. also...i asked him what he thought. like if in his experience it looked like celiac. and he said he didnt think it was and then proceded to tell me about a really severe case he saw where the child was vomiting every day and tested off the charts for tTG. like come on...there are SOOOO many dif presentations of celiac disease!!! WTF?!?!? so he already thinks they dont have it. even despite what i told him about the changes on elimination. so frustrating

one good thing is that he said if the testing comes back neg then he will refer to a pedi allergist that will investigate further. so that is good. now i know that even if the results are neg then we still have something else left to try.

anyway...just wanted to rant a little. thanks all.

[Ridgewalker]

Well... I'm left feeling the same as you-- some good, some not so good.

Doctors are convinced that the blood tests are quite accurate, because that's what the studies show. But if you look at real-world cases- the story is very different. I'm not sure why this is. I believe that something in the method of the studies throws them off.

If you just look at the people on this board who report in their signatures that they had a negative blood test/positive biopsy, it shows that the studies are wrong. Add to that, people who have negative blood test/negative biopsy, but positive dietary response- and the reliability of blood testing is even more dismal. Some of these people may have non-celiac gluten intolerance, but some have Celiac that just isn't showing up in testing.

Then you look at genetics.... You've got people who have a "Celiac gene" as it's defined by our country's medical community. Then there's people with a "gluten sensitivity gene." And did you know- in the US only two genes are recognized as Celiac genes, but there are other countries that recognize something like 8 or 9 Celiac genes? So you can be considered non-Celiac in America, but officially Celiac in another country.

It's lame, and it all goes to show that while blood tests are helpful, you can't completely RELY on them.

Anyways, sorry, I went off on my own rant! I'm glad that he will refer to a GI even for a high negative. The allergists my mom has seen are pretty clueless about intolerances, though. Which makes sense actually, since allergies and intolerances are not the same thing.

[happygirl]

SEROLOGICAL TESTING (Open Original Shared Link)

[analop]

Hi there,

I know how you

[ShayBraMom]

Thats exactly why only one in 5000 people will every get diangosed in their lifetime with this desease, because the Docs still think that Celaic typically presents with wasting away due to vomiting and diarrhea! Here, this is my favourite Link. It explains so well and so easy to understand, waht Celaic is aobut and also thatthat it actually typically does NOT present with the typical Symptoms! I ev

en sent this to my Mom in Germany who is suffering from Polyps in the intestine, Fibromyalgia, weightgain aorund the stomach, thyroid desease, nightblindnes and several more things that are usually actually caused by undiagnosed Celiacs. since both my kids are positive for the Celiac-genes, the kids got it from me or my hubby or both of us (we still need to be tested), there is a fair chance that it actually comes from my side with all her symptoms and mine and my kids! Her doc understands englsih so he won't have aproblem getting things, I'm pushing in having the Celaic-Panels run on my Mom.

Open Original Shared Link

[buffettbride]

My daughter presented with very mild symptoms--nothing you'd associate with a Dr. idea of "typical Celiac." She wasn't wasting away or super-skinny or vomiting or severe diarreah. In fact, I had never even heard of Celiac before she was diagnosed.

She had acid reflux symptoms, seemingly after eating EVERYTHING. Especially since I was giving her Malt O Meal and Chicken Noodle Soup for lunch. You know "comfort foods" to help settle her stomach. I feel horrible about that, but because she had such a wheat-intensive diet for several months leading to testing, is probably why she was successfully diagnosed by blood + biopsy so quickly.

I don't know that my regular pedi would have suspected Celiac, but the GIs at Children's Hospital were great and didn't rule anything out during tested and just followed the symptoms and test results for a Celiac diagnosis. I didn't need a referral to go to Children's so one day, when I was fed up with my crummy-feeling daughter I made an appointment.

It took all of 2 months to get through the barium swallow, trying prilosec for reflux, endoscopy, and blood tests for the diagnosis. I feel SO lucky it went so well.

Had she been misdiagnosed, she'd be one sick puppy right now.

[kbtoyssni]

Doctors are convinced that the blood tests are quite accurate, because that's what the studies show. But if you look at real-world cases- the story is very different. I'm not sure why this is. I believe that something in the method of the studies throws them off.

I wonder if this is because the blood tests are pretty accurate for those with total villi atrophy (i.e. those who would also have a positive scope) because that's the population that the studies could say for sure had celiac. It's the rest of us that haven't reached total villi atrophy that they aren't accurate for.

[Fiddle-Faddle]

Well... I'm left feeling the same as you-- some good, some not so good.

Doctors are convinced that the blood tests are quite accurate, because that's what the studies show.

I have the impression that the blood tests are far more accurate than the biopsy! (Doesn't mean that they are accurate enough, though.) And of course, if you have an idiot doctor who doesn't know that you should be eating lots of gluten for months before the blood is taken, then it's worthless anyway.

The biopsy is only accurate if they happen to pick an affected patch of villi to biopsy. Six 1/4"-1/2" samples from 22 feet of intestine sounds like incredibly low odds of picking an affected patch if damage is not visible except under a microscope.

[Celena]

Thanks everyone for your responses! i am getting nervous because they should go for their blood testing in about one more week. EEEEK!!!! i really dont know what i will do if everything comes back neg. i am so concerned that DD2 is just too young to test positive. she is just a year and a half. any experience with positive or neg results on a LO that young?

to be honest i am beginning to doubt the whole celiac disease thing anyway. it seems the longer they are on G the better their BM get. they are even smelling normal(er). it almost seems like somehow G is giving their GI track something that it needs that wasnt there without G?!? weird stuff!