Still worried 😟

[9Worriedmomma]

Hi everyone!
I posted about a month ago about my 5 year olds tummy troubles. I wanted to give a little update and see if you guys may have any other advice for me. I don’t know how much more I can take of this.. her symptoms seem to wax and wane. The middle of June she got really bad going to the bathroom 4-5 times a day crying in pain and just wasn’t herself. I called our gastro and she ordered stool cultures and a calprotectin test. Her test came back positive Ecoli and her calprotectin was 203. After about a week or so her symptoms lessened.. at the end of June I spoke with my GI and we had scheduled a colonoscopy for tomorrow ..after speaking with her and scheduling the apt I decided to take her my daughter off of gluten (she did have a celiac panel done which came back fine) but I decided to give it a try anyway.. her symptoms got 100 times better her stool became formed like normal looking I couldn’t believe it and she wasn’t complaining about tummy aches as much (she would still complain here and there) But overall everything seemed to calm down. I noticed that if she ate corn she would go loose for a couple of days with a tummy ache but then she would go back to normal.

I spoke with her GI again to tell her how her symptoms improved and she ordered another calprotectin test it came back less then 16. The doc felt that the Ecoli raised the last test to 203.. So today we decided to cancel the colonoscopy (which would have been tomorrow) and watch and see what happens... well of course I get home from work and there she is complaining of a tummy ache and had 2 loose stools. The coincidence is UNBELIEVABLE. This hasn’t happened in weeks.. I am just at loss I feel like I am going crazy and I just don’t know what to do. This has taken over my life it’s made me so anxious.

Would it be normal for Crohns symptoms to come and go like this?

When I did the last calprotectin test I was at work so after my daughter went my mom put it in the container and placed it in to fridge until I got home (about an hour later). I quickly transferred the sample in the container on ice to the lab about a total of an hour and a half.. Does anyone know it this would have possibly effected the result?

Thank you for reading my rant it feels so good to just write it down and know that people who have been there that understand the frustration and fear will read it!

 

[my little penguin]

Hugs it’s tough
Crohns can wax and wane
Fecal cal cam jump around as well
Infection and inflammation can raise fecal cal
Corn really isn’t digestible for most folks especially kids so not an indicator

Unfortunately pulling gluten prior to a scope isn’t recommended since you have to actually consume gluten for well over a month (daily ) to determine if celiac is present
(Gold standard over blood tests )

Have you looked at fodmaps diet ?
It removes a lot of things that cause belly discomfort
Talk to your child Gi first though.

15 is a great fecal cal though

 

[crohnsinct]

No. The way you handled the sample was exactly right. Fecal calprotectin stays stable at room temperature for up to seven days so you definitely did not mess with those results.

Could she have accidentally gotten some gluten? It can hide in the darnedest of places. I just read an article today that said some vinegars have gluten in them. Certain meds, vitamins and supplements have gluten in them. A toaster that previously handled non gluten free products. Some deli meats have gluten in them.

As I was reading your post, I also thought the Ecoli could have raised the cal pro to 203. Also, some celiacs get slightly elevated cal pro results.

I would just watch what she is eating very carefully and see inhere symptoms don't resolve. If not, do another cal pro. If raised then you could reschedule the colonoscopy. I would however, also schedule an upper endoscopy so they could look for celiac damage. However, first I would confirm with the GI how long she has to be back on gluten in order for celiac damage to show up.

 

[9Worriedmomma]

Thank you my little penguin and crohnsinct! I knew coming here and talking it out would help! I actually put her GF french toast in the toaster that we use for our regular food.. I wonder if maybe that’s what happened.. I will wait and see.. hopefully she goes back to normal and if not injury have to bite the bullet and do the endoscopy and colonoscopy I just am so nervous to put her little body that has already been thru so much thru that..

I got so nervous that my mom put the sample for the calprotectin in the refrigerator and when it came back at less then 16 I kept second guessing that maybe keeping it cold skewed the results.


Thanks again ladies your words, thoughts and knowledge truly help this worried momma!

 

[my little penguin]

It’s hard in the beginning
Fecal cal can be room temp
Refrigerated or frozen so ... your good there

Gluten free
When Ds was gluten free
His own toaster was a must
We got a toaster oven and foil so it was clean
Separate pans /utensils
Same place to eat
Serve her first always

We have dealt with true ige food allergies for yearz
So reading labels and cross contamination is key

Some things label better than others

 

[Carolina*]

This sounds a bit like my daughter was, she would have cramping/diarrhea for a few days and then go a couple months with no symptoms. We had a GI appointment scheduled once and canceled for the same reason. Once she had her 3rd incident we finally sought out a GI for testing. She has Celiac, some thoughts, make sure you have the FULL Celiac panel, some only run a couple of the tests whereas the full panel is 6 tests. Also, it is critical that she is eating gluten prior and also her immunoglobulin serum must be 'normal' for the tests to be accurate. If serum tests low, she can still have Celiac though blood won't show it. A lot is changing right now in the Celiac world, current research is saying the blood work is the most accurate as opposed to the endoscopy. Reason being that it is VERY easily missed. They are now diagnosing without and already do in other parts of the world, we are so behind. Went to Italy recently and it is absolutely incredible how it is treated there. My daughter had a mildly elevated fecal at diagnosis, we test it often to monitor her for IBD also. Hers raises slightly when she's running on the constipated side but hasn't had a flare since September of 2017 on GF diet, that being said I am still on high alert for any changes because her initial scope showed surface colon inflammation. In hindsight I think she had 'silent' Celiac for a few years before diagnosis, she had no GI symptoms but was very pale, dark eye circles, and had a very slow fall on her weight percentile. We attributed her coloring to allergies and she was growing and tall so the weight didn't initially alarm anyone and was subtle over time. All that being said, I am glad we decided to do both colonoscopy and endoscopy when we did and wish we hadn't waited. The University of Chicago Celiac Disease Center website is an excellent resource on Celiac. Good luck!