How reliable is abnormal blood work?

[1tiredmama]

My teen lost 50 lbs over 12 months due to chronic nausea. Peds GI ordered bloodwork. One test came back so high for Crohn's, it shocked the doctor and prompted him to perform upper and lower scopes. Both were surprisingly normal. Only esophagitis was noted. GI repeated the IBD panel at a different lab to rule out an error. Two of 4 tests came back abnormal. One is a predictor for an aggressive form of Crohn's.

Just when I thought we had nothing serious to worry about, Crohn's comes up again. Now, my son is supposed to have an MRE and a gastric emptying scan, the latter because he recently vomited food that he had eaten 20 hours earlier. As you know the cost of these tests and the missed time from work add up. He recently had an MRI of his brain to rule out a tumor. Each MRI requires sedation because my son has Tourrette's. Very expensive, even with good insurance.

Does anyone know how reliable bloodwork is for Crohn's disease?

 

[Momto2girls]

I know -- I hear you on the cost. We have insurance -- but it is only 80/20 -- well 20% of all of that is still $10,000+++ and we don't have that kind of money. It is very stressful for us.

I don't know about the tests -- do you know what they were exactly? The only blood tests we've had is sed rate, maybe one other inflammatory marker (these are not specific to IBD from what I understand), and then things like a CBC to look for anemia (also not specific). The one test everyone here seems to think is the best is a stool test -- fecal calprotectin -- it is specific to IBD.

But maybe there is a genetic test marker you got? Some of the other ladies here are much more knowledgable and can help you I am sure.

ETA: The scope can't see most of the small bowel -- so that's what the MRE is for -- it is possible you could need than in order to find the disease.

 

[Farmwife]

My Grace has normal everything!
That's why it took so long to dx her.
She did have a high LDH off and on. Which is what the GI will go by instead of sed rate for inflammation. But Grace is one of a kind, for sure.

 

[Niks]

J's tests always come back normal too, which is why we are having a tough time with a diagnosis.

If you have a couple of tests that have come back with positive markers, it is definitely worth getting the other tests done.

I really sympathise with you over costs, over here we don't have to worry about that, but then again not all tests needed are always done! :ywow:

I really hope you can work things out. Good luck xx

 

[my little penguin]

Hugs
Agree with the others lots of normal tests here.
I actually changed jobs to get a better insurance plan.
MRE is needed to help rule out small bowel disease.
Ask about their angel or free care fund you may qualify for something extra.
Most kids qualify for the states medical assistance program as a secondary insurance due to Ibd but Tourette's definitely qualifies so another option.

 

[1tiredmama]

Thank you for your responses. We are trying to get SSI benefits for our son. Even though we have provided a file of medical records an inch thick, and paperwork showing that he has been too sick to go to school for 3 years, and documents from the court declaring him incompetent and appointing me as guardian, we are still being told that we have not proven he needs benefits! Unbelievable!

Anyway, here are the only abnormal tests: ASCA igg--extremely high, AMCA--positive, and gASCA--positive. All other tests (CBC and fecal calprotectin) are normal. Although, something in the CBC indicated a need for vitamin B12.

 

[Jmrogers4]

A lot of Crohnie's are lacking in vitamin B12 hard to absorb. Sounds like the test was the prometheus prognostic which I understand is a fairly new test. My son just had one done even though we already know he has CD, his GI's reasoning was it gives a better overall picture as to the severity or possible severity of the disease and we were having some growth issues even though all the labs and latest colonscopy/endoscopy came back normal. Results came back on Friday but GI office is closed on Friday, so I have to wait until tomorrow to get results.

 

[my little penguin]

It's not through ssi you need to be denied that.
It's medical assistance .
So only insurance sorta thing. That picks up the 20% your primary doesn't use .

There are loopholes depending on your state for medical assistance .
Hope that helps

 

[Jmrogers4]

Meant to ask if they took biopsies during scopes? sometimes even though everything looks normal there is microscopic activity/inflammation going on which only shows up on biopsies

 

[1tiredmama]

Meant to ask if they took biopsies during scopes? sometimes even though everything looks normal there is microscopic activity/inflammation going on which only shows up on biopsies

Lots of biopsies--all normal. May I ask, how did you find out that your son has Crohns if his scopes were normal?

And, yes, one of those blood tests is a predictor of how aggressive the disease is or may be in the future.

 

[Jmrogers4]

First scopes were not. These were follow up 3 years to check for disease progression why we were still seeing lack of growth. Biopsies just showed reactive lymphoid aggregates but no active disease at least in the sections we could see through scopes. We are thinking it is probably currently active in small intestine which we would only be able to see through pill cam so added some medication and is on partial EN (more than 50% of daily intake) and hoping that does the trick. Also why he had him do the prometheus prognostic. May still be doing the pill cam if we don't see improvement by April

 

[AZMOM]

It's a piece of the puzzle, dear but unfortunately doesn't stand alone to dx. Id compare it to ANA and RF (rheumatoid factor). There are healthy people positive for both. There are people with high ANA and anti-Smith (hope im remembering that correctly) like Claire who'd you'd think might have lupus. But she doesn't.

Without a definitive biopsy in addition to symptoms and labs etc etc etc, a definitive diagnosis is a challenge.

And I so feel your pain on the out of pocket. It's tough!!!!!!!

Big hug - keep moving forward - I hope you can get your baby feeling better!

J.