How is crohn’s disease diagnosed?

amother

Mon, Jan 27 2020, 1:32 am

I’m pretty sure dd has crohn’s.
She has many of the symptoms but has not been officially diagnosed.
Our pediatric gastro is so far calling her issues IBS. She has medication to control stomach pains, was told to be careful with dairy.... and it’s working a lot (the meds and the dairy cut back) but not completely. She still suffers a lot just not as much as before.
She gets unexplained stomach pains, diarrhea, has low iron, is slightly underweight, has eye pain sometimes...
Based on my research, it looks like crohn’s disease.( I know, I didn’t go to medical school....)
When is someone given the official diagnosis of crohn’s?

amother

Mon, Jan 27 2020, 1:48 am

cnc wrote:

https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

Thy usually start with a blood test and stool test .
Also it’s rare for a young child to be diagnosed.

She’s not so young, a preteen really..
Blood tests showed low iron and low vitamin D.
Stress definitely makes things worse.
I’m not sure why the doctor didn’t order a colonoscopy or do the stool culture. I think he was satisfied that the meds he gave her was helping to a great extent. We have a follow up soon and I wanted to know if I should mention crohn’s.

amother

Mustard

Mon, Jan 27 2020, 4:45 am

My daughter was diagnosed at 7

First did blood tests and stool at her pediatrician including a gastro panel. Almost every number was out of wack. Not a single number in any test was in normal range. Her CRP numbers were through the roof. Our pediatrician thought maybe celiac based on those numbers.
Went to GI. He immediately thought crohns based on the numbers.
She was immediately put on prednisone to control symptoms so she could function but no other meds so wouldn’t mess up tests
Shortly after did a colonoscopy to check large intestines and endoscopy to check esophagus in one visit.
Then did CAT scan another visit to check the small intestines.
The tests all just confirmed what dr knew based off the original blood work.

With my daughter (who is now 10) a huge concern is development. Getting diagnosed young can ensure she hits puberty healthy and will develop correctly so it is important to get a correct diagnosed.

It can’t hurt to get a second opinion. I know a teen who was misdiagnosed and had a severe flare up requiring long hospitalization.

Also these stomach issues can be interesting. My father has symptoms way worse then my daughter my whole life. He goes to a GI that diagnosed my siblings with crohns. But my father is considered IBS. He still takes lots of steroids and suffers tremendously - but his diagnoses never fell into the crohns family.

amother

Slateblue

Mon, Jan 27 2020, 4:50 am

I should add, OP, that its possible for the bloodwork to look fine and still be crohns-happened with my daughter. She was 6, and having bloody stool. The bloodwork came back fine so the GI said its probably not crohns. They scheduled a colonoscopy, thinking she had a bleeding polyp-and during the colonoscopy the GI was surprised to find full blown crohns. Her subsequent stool samples did show elevated inflammatory markers, but for some reason the blood tests arent as reliable with her

amother

Mon, Jan 27 2020, 5:04 am

Mustard, how did your dd function in school before being treated? I’ve had to keep dd home at times when she was doubled over in pain or spending too much time in the bathroom. My heart goes out to her when she tells me about stomach pains and diarrhea attacks in school. She’s asking to go to sleep away camp and I can’t send her like this. Getting her there on time in the morning is very difficult because often her stomach pains are bad in the morning.

amother

Gray

Mon, Jan 27 2020, 5:06 am

amother [ OP ] wrote:

I hope you spoke to the principal so she has a free pass to come and go as needed. My daughters class has a few girls that are absent a lot or while in school need to leave and my daughter was telling me the school works very well with these girls.

amother

Chartreuse

Mon, Jan 27 2020, 6:26 am

You can help a lot with diet, something like SCD etc, I have a friend with crohns who does very well on it
Also, a good functional medicine Dr will figure out the root cause of her illness (leaky gut? Mold exposure? Etc) regardless of the diagnosis
Crohns and ibs are both autoimmune.

amother

Red

Mon, Jan 27 2020, 6:36 am

amother [ Chartreuse ] wrote:

IBS is not an autoimmune disease.

amother

Maroon

Mon, Jan 27 2020, 6:42 am

My relative took a while to get to the diagnosis. In the end she had an MRI and a capsule test - only after that was she diagnosed.
(Yes she had undergone blood tests, colonoscopy and endoscopy).

ETA the diagnosis was as an adult so I guess this is not directly answering your question

amother

Royalblue

Mon, Jan 27 2020, 7:42 am

amother [ Chartreuse ] wrote:

SCD is brutal but worth the try. I think there's a new one from the U of Mass that's worth looking into also.
I wouldn't do SCD instead of meds but along meds.

amother

Mustard

Mon, Jan 27 2020, 7:49 am

amother [ OP ] wrote:

My daughter right now is on Humira which is really working so she doesn’t have regular issues bH

Stomach pain at night - try using a hot water bottle. My daughter finds it very soothing. And practice calming breathing techniques.

I tell her teachers on a need to know basis and they have all been super qccomating. Like her teacher now requires girls to sign out in a book when they use the bathroom. She told my daughter to pretend to write her name so classmates shouldn’t know how often it is.

Dr also recommends waking extra 1 hr before school. Eating breakfast early and giving yourself enough time to go in morning because it’s the best time to go anyway.

Hatzlacha and I hope you figure out the best way to help her.

amother

Plum

Mon, Jan 27 2020, 8:03 am

OP, what your DD has sounds awfully like my DH's version of IBS. He has IBS-A that's completely stressed based. When he's under a lot of stress, whether real or imagined the flare-ups are unreal. No other food triggers beyond dairy. The only differences are that he's far from underweight and he doesn't get eye pains.

He so far has taken iron to treat the low iron (and B"H it seems to have worked), had several colonoscpies that conclusively said no Crohn's. His current GP just prescribed him a pill that will supposedly help, we'll see how that goes.

It's super frustrating, he did go to day camp and yeshiva in Israel, but I don't know how he handled school with all the stress.

Hope you can figure it out soon!

amother

Maroon

Mon, Jan 27 2020, 8:10 am

amother [ Royalblue ] wrote:

SCD is brutal but worth the try. I think there's a new one from the U of Mass that's worth looking into also.
I wouldn't do SCD instead of meds but along meds.

I agree with you that this is worth a try together with the doctor's recommended intervention. And U of Mass does have a lot on their website to help you along, as well as plenty of ongoing research.

However I think you exaggerate to call it "brutal".

Have you actually been on this diet?
Perhaps it was hard to deal with losing all the grains and refined sugars?
I personally have been off of grains due to celiac, so this was not a big leap.
The concept is what is important: removing inflammatory foods, together with introduction of probiotic and prebiotic foods.

It may be hard to get a young child to comply, however there are ways to do this! Kids with allergies and celiac must also adjust to their specific diets in the context of the classroom.
And if it its way out of someones league (though I'm sure U Mass won't encourage it), I'm sure introducing the concept to a child's diet incrementally is better than nothing.