Routine Labs & Tests?

[Mehita]

I'm just wondering what typical lab and testing your kids have at their gastro appointments (whether flaring or not). I was just paging through DS's' records and he's never had a fecal cal test in the 5 years since dx, yet it seems like it's a pretty standard test that many kids on this forum have.

Typically our GI orders:

• CBC w/platelets diff
• Comprehensive metabolic panel
• CRP
• ESR
• Celiac panel (annually, but we already have confirmed Celiac)

At our last visit, post surgery, he added a nutrition panel:

• Iron
• Vit D
• Ferritin
• Zinc
• Vit B12
• Folate
• TSH
• EBV - no idea what this is?
• CK
• Liver tests

Until this last visit, we've never had a nutrition panel done before.

So, my question is, should I be asking for other tests? Or is what we're already doing cover everything?

Note: DS is still only on Pentasa right now. He'll likely be starting 6MP or Remicade in June. Not sure how much meds play a factor in labs ordered.

Thanks,
T

 

[ChampsMom]

Alex' labs are similar to yours minus the Celiac panel. I do not believe he has had a fecal cal test since first being diagnosed. I always thought that was a test to see if more tests needed to be run (ie, in lieu of scoping first, run that test then possible scope?) I could be completely wrong! Just what I thought...

Great question though - Alex has been on Pentasa since his diagnoses and his doctor just changed him to Lialda (has anyone heard of that?). She said it was the same med, but instead of Alex taking 7 pills per day (4 in the morning, 3 in the evening - 3,500 mg) now he is taking 3 pills per day in the evening. She recommended it because Alex was regularly missing doses (as close as I watch him and tell him "Go take your pills now..." he'd still miss doses. Grr!

 

[CarolinAlaska]

Mehita, Jae gets your same routine blood tests minus the celiac panel. I don't know if I see a point in doing that routinely, but it must give a number that helps the doc to monitor the celiac. We also get the 6MP metabolites now since being on that. We also do the fecal calprotectin about every 3 months (for now, I guess until she is stable). Of the nutrition panel, I don't know if Jae has ever had a CK. The EBV is epstein barr virus panel (for mono). Was he tired or have lymph nodes in back of neck? EBV and TSH may be commonly ordered for fatigue. The CK is for muscle breakdown/inflammation. Three of the liver tests are in the comprehensive metabolic panel, but there are other liver tests in the liver panel... the one thing I don't see in your list is magnesium. I hope this info is helpful.

 

[Sascot]

Our blood tests always seem quite basic and I have always had to be the one to ask for extras like vitamins, etc. Now Andrew is on 6mp we are keeping an eye on his ALT, AST and neutrophils.
We regularly have a faecal calprotectin done, but this is because it is the only test that ever shows anything (bloods never showed anything before or after diagnosis)

 

[CDJ]

Sascot I agree with you in that our blood tests in the UK always seem quite basic. We are never told what the tests show either. I am always the one that asks for vitamins etc. I have even had to ask them to check for low iron levels. When Josh had a blood test last week I asked about vit b12, but doctor was quite sceptical about whether there was any point.

We also have fairly regular faecal calprotectin tests done. Josh doesn't suffer from blood loss in his stools, but this should show up signs of a flare.

I always think that those of you in North America are given far more detail of the tests your children have than we do here in the UK.

 

[Jmrogers4]

Pretty much the same here minus the celiac. We have only had one FC and that was last June and at that point it was to see if we needed more tests. It was normal but we still ended up having to do scopes 6 months later. Next one which he says he wants to do an a year but I'm thinking I may have done in 3 months will be to a double check for no inflammation

 

[Farmwife]

Yes, Grace gets all that, minus the celiac.

However, her GP will always test for magnesium and zinc.
She also had a reason that she wants to check her vit A. She didn't say why on that.

 

[Farmwife]

I found this on the CCFA website. Press Here for reference.


Monitoring your health with laboratory tests

If you have been diagnosed with IBD, even if there are no disease symptoms or extra- intestinal manifestations, you will undergo periodic blood testing for evidence of active inflammation and complications of your disease or medical therapy. Physicians will tell you that IBD can fool you. You may feel well while inflammation is building in your intestine or other complications are underway. It is also important to understand that the test results will change over time, reflecting your condition. Tests are a snapshot of where you are today, and not a long-term view of your health. Tests that your physician may order on a regular basis will include the following:
•Complete Blood Count—identifies anemia, infection, inflammation, and monitors certain medications
•ESR (sedimentation rate)—identifies inflammation
•C-reactive protein—identifies inflammation
•Liver Enzymes—screens for liver complications
•Electrolytes—checks for dehydration and medication side effects
•Stool markers and cultures—identifies inflammation and infectious complications

 

[Brian'sMom]

Ours doesn't do the celiac panel anymore...did a few times in the beginning. Only does vitamin levels every few months if he's flaring. Doesn't do them each month. Otherwise the usual you mentioned. I asked about the fecal cal test because I've seen it mentioned here often also. Our GI said 'he'd have no baseline to go by so we don't do it. And sometimes the number then comes back high but kids in remission and we don't know what to do with those results.' I didn't quite understand what she was telling me. Concluded they don't do them. Not sure why

 

[Tesscorm]

Stephen's tests are pretty similar to those you posted, Mehita.

The only difference is Stephen has had A-1-AGP and IGF-1 regularly tested. Not sure what they are or why they are tested???

 

[CarolinAlaska]

Stephen's tests are pretty similar to those you posted, Mehita.

The only difference is Stephen has had A-1-AGP and IGF-1 regularly tested. Not sure what they are or why they are tested???

maybe those are specific to Remicade tests?

 

[Johnnysmom]

Johnny gets the same tests but also a Hepatic profile (NO GGT) and Differential. I think mainly because he is on 6mp. Also 6mp metabolite testing.

Our old GI didn't do Fecal Cal. It's not because he didn't want to, it was because insurance wouldn't cover the test. Some insurance companies are still holding out on approving it. Also, the Resident that works with our GI interviewed at U of M in the GI department and he said he took issue with the fact that the department does not use fecal cal to monitor disease activity. So it seems that some hospitals have not started using the test either. I would ask your Dr. and your insurance company. If you have to pay out of pocket the test is about $600.

 

[Tesscorm]

Carol, no those aren't remicade related, he's had these tested at almost every blood test since being diagnosed... the A-1-AGP is has some relevance to the liver and rises during active inflammation (his has fluctuated regularly) and the IGF 'may' have something to do with genetics but I'm not sure (it's always been within normal levels so haven't looked into it).

 

[Mehita]

Thanks for the info, everyone!