Thoughts on negative Prometheus

[Optimistic]

For the brain trust:

Now that I've finally accepted that ibd is going to be a constant companion in our life, I'm trying to learn and to sort out results of two tests that confuse me.

My som was originally a confusing case. One hospital said from biopsies it was some IBD not sure what, another thought maybe a very rare form with some Crohn's markets but missing others so wouldn't commit, and a third said lets just go ahead and call it Crohn's.

Primetheus was negative. I know there are false negative. But highest his fcp ever reached was 250 when he was hospitalized.

Thoughts? Are there other things I need to consider for all this to make sense?

 

[my little penguin]

Has he had genetic testing done at Emory for the rare crohns forms and diseases that mimic crohns ?

 

[my little penguin]

http://geneticslab.emory.edu/tests/MM160

 

[my little penguin]

I had one parent have the doc call it crohns
Only to find out it was yersina
Bad milk - recall issued
Fixed it and moved on

Others call it crohns
But turns out it was bechets

 

[Optimistic]

He also showed flattened villi on first scope (like celiac) which has healed months later. Is that normal? He was gluten free but I'm not sure how that works.

Good idea on the generic testing. He is seen at Emory and dr has mentioned. Why did you do it?

Any ideas on why a child who clearly has Crohn's or something like it tests negative on Prometheus? And, is there a list somewhere of markers a pathologist uses to say Crohn's?

 

[my little penguin]

Granulomas check the crohns box
Ds had flattened villi as well but wasnt gf
But had clean scopes while on gluten with meds
He doesn't fit crohns very well but has a ton of EIM
That are severe so Gi wants to tailor therapy better if at all possible

 

[Clash]

What did his scopes show visually beyond the flattened villi? What was his location of active disease, you may have said before but I've forgotten. I'm trying to see if I can find the markers used in biopsy. I know they like to be able to check the granuloma box but that just isn't the case for a lot of CD patients.

If I come across anything I'll post back again.

 

[Optimistic]

No granulomas. No EIM.

He was eating gluten when he has flattened villi but was negative for celiac. went off gluten and they healed.

already been to Boston and Cincinnati.

Does your son have positive Prometheus? Celiac positive?

Looks like genetic testing is for early onset but will investigate. Ty.

 

[my little penguin]

Did you do 23&me testing?
It's free for Ibd kids and shows if they have crohns genetic markers
Ds has a ton
Really helped our Gi and Rheumo

 

[Optimistic]

What did his scopes show visually beyond the flattened villi? What was his location of active disease, you may have said before but I've forgotten. I'm trying to see if I can find the markers used in biopsy. I know they like to be able to check the granuloma box but that just isn't the case for a lot of CD patients.

If I come across anything I'll post back again.

I'll pull it up and post.

You guys are awesome.

 

[my little penguin]

Anyone dx before age 10 is early onset Ds was dx at age 7.
But some are dx later but have disease signs earlier

 

[my little penguin]

He was not tested for Prometheus
Celiac blood work was negative but does better gf mostly symptom wise

 

[my little penguin]

Ds had multiple granulomas throughout
But still is a mystery
We were told crohns is the best dx they have right now
But are still watching him closely and doing genetic testing as well

 

[Clash]

I have got to run out. I'm posting a link to a Google book search that gives and exempt of what pathologists are looking for in biopsy. I'm not sure how well this link will post but it was the page and left paragraph that came on screen for me. Scrolling up one page gave a bigger picture of the process. I'll try to find a better article or paper when I get back: So left side page 210 and 212.

https://books.google.com/books?id=CLvMBQAAQBAJ&pg=PA212&lpg=PA212&dq=what+markers+do+pathologists+use+on+biopsy+for+Crohn%27s&source=bl&ots=pwXrooBagb&sig=UNcAwe1gqf-L-T0OmxQDgX_9lKY&hl=en&sa=X&ved=0ahUKEwjzj-fCiazKAhXIYiYKHaJrBi4Q6AEIIDAF#v=onepage&q=what%20markers%20do%20pathologists%20use%20on%20biopsy%20for%20Crohn's&f=false

 

[Maya142]

My daughter had flattened villi too. They healed over time - she never went off gluten. I also didn't believe her diagnosis - she had none of the classic Crohn's symptoms. Just constipation and belly pain. But she had granulomas in her TI and small white ulcers all through her colon. Also inflammation in her stomach. Her GI said it was definitely Crohn's.

The 23 and me test showed lots of genes for Crohn's. It also showed that both my husband and my older daughter have lots of genes for Crohn's, but neither has developed it (yet!).

 

[DanceMom]

A had a positive Prometheus test but doesn't seem to have Crohn's. She's full of GI symptoms, but no chronic inflammation or granulomas.

 

[crohnsinct]

Way back when I was trying to find something else that my little one might have, I had a list of differential dx's. When I get home I will post the article.

If her older sister didn't have Crohn's I would be questioning my younger one also. But her biopsies confirmed it or so I am told or I think I was told. Is that my alarm ringing? Was this a bad dream?

Our doc doesn't put any stock in the Prometheus test.

 

[crohnsinct]

I wonder if your son's unique presentation has anything to do with why diet and SCD alone work so well for him and not for others with more classical IBD? He could be a real valuable link in identifying good candidate for the treatment....or maybe he has something else? UGH! Another mystery! I don't like mysteries...I skip to the last page!

 

[CarolinAlaska]

Jae did the 23andme but I never could see online the kinds of results you guys refer to. Did they mail something to you? The website seems worthless.

 

[my little penguin]

You take the 23&me raw data file to
Prometheseswebsite for$5
They generate a report of snp and health risk
https://m.youtube.com/watch?v=KpZl4-vbJjA

Website
https://promethease.com

 

[my little penguin]

http://www.snpedia.com/index.php/Promethease

 

[CarolinAlaska]

Thank you. Why didn't they tell us this?

 

[my little penguin]

23& me is banned by the FDA from producing health reports
They just received approval this week to supply generic reports ( nothing useful but better than before )
Promethease is a seperate thing not related to 23&me and research only

 

[Mehita]

I'm late to the game here, Optimistic. Sorry. So, you do or not have official dx for IBD and Celiac?

 

[Optimistic]

Sorry, didn't get a notification that someone had posted!

He has Crohn's. Originally the drs were in the general IBD camp, not sure which one, but they fell into Crohn's camp as more time passed and there were two more scopes and biopsies. There is still one pathologist who wants to call it more likely Autoimmune Enteropathy. What throws them off is the negative Prometheus (which I've learned some drs trust and some do not) and the fact that the highest FCP he ever had was just 250 when when he was in ICU and scopes showed inflammation all throughout. Second scope maybe 9 months later inflammation was concentrated in TI and duodenum.

He was negative for Celiac both at first flare and months later when he had been off gluten for months. My guess is he is fine with gluten.

I've learned my grandfather had Crohn's.

One sibling is tiny, hates to eat and occasionally says his stomach hurts. Next up is getting a FCP for him.

 

[Maya142]

Optimistic, I know of another kiddo who has both arthritis and Crohn's and his FC has never been above 100! They don't know if they just don't get the sample at the right time, but his scopes and biopsies showed definite Crohn's - multiple granulomas.

My daughter's highest FC was 480 - and mostly it has been low - under 250 and has gone as low as 26. Her Crohn's is relatively mild, thankfully.

Good luck with your second kiddo - fingers crossed that the FC comes back negative.