C - Diff elveated Calprotectin

[Biggidybates]

Hello everyone. I am new to this site and have been reviewing various threads on this site over the past few days in an attempt to find some answers/guidance.

My 5 year old son had chronic diarrhea lasting about 3 months before we were able to get him into a gastro specialist. Labs were done and they noted elevated blood platelet count and elevated calprotectin levels. The tested for c-diff and he tested positive. He completed a round of flagyl and it seemed to know out his stomach pain and diarrhea. A few weeks after finishing flagyl we took him to the ER for stomach pain, fever of 104, vomiting clear liquids and diarrhea. They did a scan and dx him with gastronentinitis and told us to follow-up with the specialist. This was about a month ago and we have not had any problems since. His stools were formed and he has not complained of any stomach pain.

However, we had another stool analysis done for calprotectin to era on the side of caution and the result came back 1300!! I could not believe how high ihs level is given he has no symptoms. He has been putting weight back on since c-diff, his color looks good, he has an appetite, he has more energy and he no longer complains of stomach pain. We are dumbfounded. We had him tested again for c-diff and are waiting on the results. I worry he may have IBD given my mother-in-law has crohns. I am really hoping there is another explanation as to why is fecal test was so high. Has anyone been in a similar situation? If he comes back with c-diff again, could it be caused by IBD? We are prepared to do scopes, but it baffles me that he has such inflammation with no visible symptoms. Thanks for your help everyone!

Chris

 

[Maya142]

If he doesn't have diarrhea, it's not CDiff unfortunately. There are only a few things that can raise Fecal Calprotectin - IBD, NSAID use, and infection are among them.

They are checking for infection. Has he been taking Motrin or something like it regularly??

Scopes will tell you if it is IBD.

And if he does have IBD, then yes, he is prone to getting CDiff more often. My daughter has gotten it twice.

Unfortunately, there are many kids with IBD who don't show signs. Some are completely asymptomatic. Some have mild symptoms like occasional diarrhea or belly pain. Some kids just have growth delays and that's how the IBD was found. There is no "typical" really with kids.

My daughter had lower right abdominal pain and occasional constipation when she was diagnosed. Some weight loss too. But she didn't have what I thought were "normal" Crohn's symptoms - diarrhea and bleeding. I was SURE the scope would rule out Crohn's. Instead they found ulcers and a week later the biopsies confirmed Crohn's.

So symptoms aren't always a great indicator - it depends on the kiddo.

Hang in there and keep us updated.

 

[crohnsinct]

How high was the calprotectin level when he was sick with c diff? Could it be that it is coming down? Calprotectin levels can go over 2500.

Yes, you could have elevated clap with IBD with few if any symptoms. This is why we hammer home the test regularly point as you can't just go by how they are feeling.

The puzzling thing is if it is IBD and he was in a flare why is he better now without actually treating the IBD? It is possible that he just went into symptomatic remission his own as IBD is a come and go disease but not likely with kids. They typically need treatment. Flagyl is sometimes used to treat Crohn's but not usually with kids but it might explain the improvement if he does indeed have IBD.

All this to say, there is no sure way to know right now without further testing.
Good luck!

 

[Biggidybates]

Thank you for the prompt responses.

My son was very sick Easter Sunday with a fever of 104, vomiting clear liquid, diarrhea and stomach pains. The symptoms lasted for about 3 days and then he was back to normal and has been ever since. I can't remember the exact date, but I want to say it was about 2 weeks after Easter we had another stool test which revealed a calprotectin number of 1300. We had been giving him NSAIDs over the Easter weekend when he had the fever (for about 3 days).

I do not know the score of his first calprotectin test. At the time, we did not think anything of it as our son is extremely healthy with the exception of the chronic diarrhea. He was in the 100% for height and 90% for weight just before the diarrhea started. After the flagyl he had another check up and was 89% for weight and 100% for height. He as since put on 2lbs.

This is was baffles me. At this point, I am waiting to hear back from the gastro if he has c-diff again. If not, then we will be doing scopes. Thanks again everyone.

 

[Farmwife]

Hi and welcome
Sadly this is how it happened for my girl.
Grace was only 3 at the time.
She however had lots of symptoms but all tests came back negative until she showed positive for cdiff. We thought that was the culprit but the problems came back.
She got scoped and it showed ibd.

 

[Maya142]

The first Fecal Calprotectin might have been high because of the CDiff. But the second one, if you hadn't given him NSAIDs recently and if his stools are formed, then it's likely to be inflammation.

Crohn's can be super sneaky - often kids are asymptomatic or have very few symptoms. In hindsight, many parents see subtle symptoms we missed - for example, my younger daughter was always a picky eater, complained of stomach pain a lot as a child and would periodically have diarrhea for no good reason. She also really struggled with fatigue and could never keep up with her friends or her older sister. Before she was diagnosed, she became so iron deficient she required iron infusions.

She was diagnosed with Crohn's at 16.

It is definitely a good sign that he is still growing and gaining. But it doesn't necessarily mean he doesn't have IBD, just because he is growing. Symptoms can wax and wane. Flagyl is actually used for Crohn's - it has some anti-inflammatory properties. So besides treating the CDiff, it could have also had some effect on the Crohn's symptoms.

Next step is likely to be scopes...they should give you some more answers. Also make sure small bowel imaging is done too - usually they do MREs or pillcams. I'm not sure which is used more in very little kids, so I'll tag some parents who had kids diagnosed pretty young: Pilgrim, my little penguin.

 

[Biggidybates]

Thanks again for your responses... they are much appreciated. My son’s c-diff results came back negative. Next step is to set up scopes. I will definitely ask about the pill cam. It still baffles me how my sons calprotectin result could be so high without any symptoms.

 

[Carolina*]

I am so sorry you are here. I just wanted to add in that my daughter was diagnosed with IBD this past October. Prior to that she had a 2 week (a few times a day) what we thought was a bug in May. By the time we could get into the GI she was better so we didn't end up going. Fast forward to the end of August she had another week long episode even more mild. It wasn't until she flared again a month later that we discovered she had IBD. Point being, she clearly had it all that time but she was coming out of the external signs of the flare on her own. She also was consistent on her height curve at 85%. The only thing I can point to in hindsight is a VERY slow decline on the weight curve and pale skin/dark eye circles. I hope it doesn't turn out to be IBD, but wanted to back up what everyone else has said that it can be very tricky and vary considerably.

 

[Biggidybates]

Update... Jackson had his scopes this morning. Doc says it looks like mild crohns in the large intestine. She took biopsies, but won’t get the results back until next week. I feel terrible for my son, but am glad we are getting a diagnosis so that we can start treating it.

 

[Maya142]

Really sorry to hear that, but glad you have a diagnosis. It will take some time, but you will find your new normal. Generally, the first year is the hardest because you're trying to find the medication (or combination of medications) that will put your son into remission.
There is a steep learning curve but there is LOTS of good info on this forum. And lots of moms willing to answer any questions you have!

Hang in there :ghug:!

 

[Biggidybates]

Thank you Maya! I am glad I found this forum.

 

[pdx]

Sorry that your son has Crohn's. I hope that whatever treatment you and his doctors decide on works well, and quickly!

 

[crohnsinct]

Oh man! I was hoping beyond hope that this wouldn't be the case. Well at least now you know what you are dealing with and can move forward. Maya is right. The first year is filled with a lot of back and forth but you will find what works and hit your stride and not look back! If you need some encouragement read the success stories. There are many more than just those. Truth be known when your kid is doing well you aren't typically hanging out here so don't post as often. many, many kids go on to lead pretty normal lives.

Hang in there! We are all here for you ready to help you navigate new waters.