Could this be Crohn's?

Hi Everyone
I also posted in the UC board but thought I'd pick your brain.

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, no 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.
No blood in the stool.
He doesn't take any meds or ibuprofen, just Tylenol every so often for pain from braces
No history of IBD or Crohn's in the family, but we do have someone who had colon cancer

Doctors are thinking its IBD, UC or Crohns but he doesn't have the flare ups. I have read about Silent Crohn's and have a GI appointment Wednesday but any thoughts would be appreciated.

You said no IBD in the family, but what about other autoimmune diseases - plaque psoriasis, rheumatoid arthritis, lupus, celiac, etc.? Any of those in the family?

As I posted in the UC thread, this doesn't sound like UC, which nearly always has blood and/or diarrhea and/or urgency in it symptoms.

Crohn's can be more insidious, with subtle symptoms like you describe (fatigue, low fevers, weight loss or lack of growth, anemia, etc), and very little obvious GI symptoms - although I'd say *most* of the time, people with Crohn's do have obvious GI symptoms at some point, just not all the time and not necessarily early on.

You've done the appropriate blood tests and stool tests, and they indicate something is happening. You've ruled out the first possibilities: medication reaction, celiac.

The next step will be to go over this with the GI, and at that point, I'd be shocked if the GI doesn't order a colonoscopy - and possibly an upper endoscopy at the same time.

Then, depending on those results, an MRI or CT scan of the small intestine would be next, if needed (because the colonoscopy and upper endoscopy still can't see the 15 or 20 feet of small intestine that can be affected by Crohn's).

Let us know how the GI appointment goes and what tests are suggested to do next.

Post Edited (beave) : 3/11/2019 6:14:08 PM (GMT-6)

Thanks everyone. Appointment with the GI tomorrow. I'll post what we find out.

Hey there!

Before you rule out celiac disease, please make sure the entire celiac panel was given and not just the typical screening TTG tests). Know that some celiacs (about 10%) are seronegative. Please make sure the GI biopsies for celiac disease.

Anemia was my only symptom when I was diagnosed for celiac disease and I only tested positve to the DGP IgA on the celiac panel. If my doctor had not ordered the entire panel, my diagnosis would have been missed. A biopsy confirmed severe damage.

Also, I thought for sure my niece had celiac disease like me. She tested negative on the celiac panel and her endoscopy and colonoscopy were normal. A pill camera caught her severe damage due to Crohn’s located beyond the reach of both scopes. I am happy to report that she is doing well.

Keep advocating, Mom!

You should be given instructions for the colonoscopy prep beforehand. Mine were always the same. Eat low residue two days before the procedure (no fibre or red meat). Stop eating solid food at 1 or 6pm (depending on if it was a morning or afternooon procedure) the day before the procedure. You can have the prep with plain water or orange/yellow-coloured squash (nothing red or purple). You can also have clear broths, tea without milk, and clear boiled sweets (again nothing red or purple).

Don't have any plans for that day. Your son will need to stay close to a toilet. Nothing can really make the prep taste anything other than like dishwater liquid unfortunately, but I found it easier to get down using a straw and doing something else, e.g. being on the computer.

Good luck.

Those blood tests are better than 90% at detecting celiac disease. So there's still a chance that's what it is, but the chance is pretty small.

Good luck with the scopes (and prep!) for him, and let us know how it goes and what they find.

Do you know whether they were able to take biopsies in the terminal ileum? Those would be key.

I think an MRE is an appropriate next step regardless of what the biopsies show for the terminal ileum.

If the terminal ileum biopsies show inflammation consistent with Crohn's, then the MRE is necessary to gauge the extent & location of the inflammation. The wall thickening can be visualized best with an MRE - they can see how thickened it is, how much length is thickened, and whether nearby segments are also thickened, and whether there are enlarged lymph nodes, fat wrapping around the intestine, etc.

If the terminal ileum biopsies *don't* show inflammation consistent with Crohn's, then the MRE is still necessary to make sure that the remaing 15-20 feet of small intestine is also free of inflammation.

Hope his scope recovery goes well (some people bounce right back and want to eat, some take a few days to return to their normal).

Let us know when you get the results of the biopsies.

Can you get a copy of the pathology report and tell us exactly what it says? (I always ask for a copy of every test report.)

I do think the MRE is a good idea - it will help define the extent & severity of the disease right now (assuming it is in fact Crohn's). It will give a good baseline before treatment is started. In some people, Crohn's is confined to the colon, and imaging of the small bowel isn't that important. But in this case, with the colon being clear but the small bowel showing wall thickening, that's exactly the type of scenario where an MRE can show just how much thickening there is, and if other regions of the small bowel are affected.

The medication plan sounds reasonable. He's at an age where it makes sense to treat it aggressively, because at his age he's just starting his adolescent growth. He has a window of the next 5 years or so to do all his growing, then that window closes. If he's sick during that time, his growth could be permanently stunted and he'll never have a chance to go back and make up for that missed window.

Earlier studies of identical twins, where one has Crohn's and one doesn't, have shown many examples of the twin with IBD ending up significantly shorter and lighter in weight than the twin without IBD. So docs have learned to treat Crohn's more aggressively at that age range. The biologic medications like Remicade, Inflectra, Humira, etc, are pretty good at helping the adoloscent have normal growth.

Thanks. Yeah, that sounds very much like findings expected with Crohn's.

Push for the MRE as you get the process started for medications/treatments.

Thanks beave. We have the MRE set for 4/16. Repeats of all the previous inflammation tests are starting to come in and like I suspected, they are all still high. Just wanted to double check everything before we started treatment. The doctor and I will speak again next week and I will definitely ask about entocort. Thanks for the suggestion.

You're welcome. Happy to help. I hope it works fine for him. If he had been feeling really sickly (fever, malaise, lots of diarrhea, maybe nausea/vomiting), then prednisone is good for getting him feeling better fast. But since his symptoms have been less severe, prednisone is probably not necessary. Entocort will target inflammation where his exists.

Good luck for his upcoming MRE and let us know how it goes. The hardest part is drinking a bunch of liquid, then having to get in the MRI machine and be still for a while.