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Not sure if its UC

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Ulcerative Colitis
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Posted 3/11/2019 3:41 PM (GMT 0)
My son (14 yr) was feeling run down and had minor chest pains when exercising. We took him to the doctor and after tons of blood and stool tests determined he's anemic. He has consistent bowel movements (1 a day, not diarrhea, no trouble making it to the bathroom) but his C-reactive protein came in a 53 (normal is <0.5) and his calprotectin Stool test stopped counting at 1250 (normal is <50). Celiac came back negative. Doctors are thinking its IBD, UC or Crohns but he doesn't have the flare ups. I have a GI appointment this week but any thoughts would be appreciated.
Posted 3/11/2019 4:48 PM (GMT 0)
Welcome to the forum. If you suspect your son has an IBD, then you should:

1.) Get a stool test to rule out possible pathogenic causes to his symptoms. Infectious-colitis, and Clostridioides Difficile are much, much more common than an IBD is.

2.) Get a referral to an gasteroenteroligist who will do a colonoscopy with biopsies.

If his values are so high, it is very puzzling that there are no bowel symptoms. The most common reason to seek out an IBD diagnosis is due to a lot of blood in stool (it looked like someone poured a whole container of red food dye in the toilet after each of my bms before diagnosis), urgent bms, and many bms in a day. You are saying he does not have those.

Is there any family history of an IBD?
Posted 3/11/2019 5:01 PM (GMT 0)
Thanks. They checked, no blood in the stool. Just dropped of the sample for the C Diff test.
No history of IBD but we do have a history of colon cancer.
We have a GI appointment this week.
Posted 3/11/2019 5:18 PM (GMT 0)
Let us know how it goes!

Not sure if you're of the age to have had your own colonoscopy yet. The colonoscopy prep is the worst part, drinking a lot of a mostly gross liquid, and pooping a lot thereafter. The colonoscopy procedure is very easy, you're asleep the whole time and remember nothing.

I hope you get your diagnosis, and he's soon on his path to feeling better!
Posted 3/11/2019 5:19 PM (GMT 0)
Has he taken ibuprofen? That can cause elevated calprotectin.

I have a similar experience to ipoop pre-diagnosis. The Big Red in the toilet plus abdominal pain and many trips to the bathroom.
Posted 3/11/2019 5:33 PM (GMT 0)
Thanks everyone. He's 14 so I'm going to request a new calprotectin Stool test before we head down the colonoscopy route.
Posted 3/11/2019 6:48 PM (GMT 0)
Perhaps the calprotectin is indicative of another autoimmune condition? (E.g. did the docs consider lupus, arthritis, etc?) Just guessing here, i only understand calprotectin in the context of colitis...
Posted 3/11/2019 7:09 PM (GMT 0)
I know the FCP test can produce false-positives, but you said both CRP and FCP were elevated (making that point moot). Yeah, I do wonder if there is inflammation elsewhere, or perhaps excessive Ibuprofen/NSAID use.
Posted 3/11/2019 9:18 PM (GMT 0)
1. Any IBD or other so-called 'autoimmune' diseases in the immediate or extended family (siblings, parents, cousins, aunt, uncles, grandparents)?

2. Is he on any medications or supplements, either prescription or over-the-counter? NSAIDs like ibuprofen, as mentioned, can cause problems in the GI tract. Other meds can too, such as PPIs sometimes leading to high fecal calprotectin.

3. Is he growing as he should for his age? Is his pedatrician tracking his growth? Stunted growth can be a sign of IBD.



This doesn't sound like UC to me - UC almost always involves some combination of diarrhea and/or bleeding.

But it could be many other things, with Crohn's being one of them.
Posted 3/11/2019 9:41 PM (GMT 0)
No other IBD or Crohn's in the family.
No meds or supplements. Only a multivitamin and some children's tylonol for pain from his braces.
He's always been small for his age but the doctor has never been concerned. He's 5' 4" at 14. She's worried about his weight with the anemia which is 90 pounds.

Thank you so much for taking the time to answer. Should I post in the Crohn's forum or do people tend to look at both?
Posted 3/11/2019 9:53 PM (GMT 0)
A few people check both i think but most only check one of them... i rarely visit the crohn's page
Posted 3/11/2019 10:33 PM (GMT 0)
I hope it’s nothing serious or chronic,
I pray that he will get well soon, and enjoys his youth and the rest of his life with a good health.
Posted 3/11/2019 10:36 PM (GMT 0)
Honestly this is the nicest forum! I have been lurking around looking for answers since last week. I really appreciate how kind everyone has been today. I will post the outcome so if someone has this same question they hopefully can learn from us.
Posted 3/11/2019 11:49 PM (GMT 0)
Further replies in the Crohn's section...
Posted 3/13/2019 10:37 PM (GMT 0)
Talked to the GI. He think its Crohn's so we are scheduled for a colonoscopy and Endoscopy in 2 weeks. Any tips for my son of what to drink with the colonoscopy meds?
Posted 3/13/2019 11:02 PM (GMT 0)
Be sure to check his lab work. Not all doctor’s order the entire celiac panel. The screening TTG is good but does not catch all celiacs. Also some 10% of celiacs are seronegative. Please have the GI check for celiac disease and obtain biopsies in the small intestine. Insist on a repeat complete panel if there is villi damage to confirm a celiac disease diagnosis before going gluten free.

I wish your son well!
Posted 3/14/2019 4:47 AM (GMT 0)
I hope his Colonoscopy will go well,

The doctor usually gives you instructions for the prep, it’s very important to follow them exactly to make sure his colon will be clean and ready for the procedure,

To mask the taste of the prep I put in my
mouth a Cough drops or Halls, tic tac, any thing with strong mint flavor, it really helps me drink the prep.
Disolve & drink technic LoL

Good luck!
Posted 3/15/2019 1:50 AM (GMT 0)
Cyclinglady - they did the following tests for celiac. I will mention to the GI though.

TISSUE TRANSGLUTAMINASE IGA (U/ML)
His level <0.5 U/mL -- acceptable is <=14.9 U/mL

DEAMIDATED GLIADIN PEPTIDE IGA, QUALITATIVE, EIA
His level <0.2 U/mL ---- acceptable <=14.9 U/mL
Posted 3/22/2019 3:49 PM (GMT 0)
Any update?
Posted 3/22/2019 3:51 PM (GMT 0)
We have the colonoscopy and endoscopy scheduled for next week. Thanks for thinking of us!
I'm still holding out hope its celiac.
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