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Suspected IBD but no one will say that

Hello! We are scheduled for scopes next month but playing out all possibilities. My 12 year old had blood in her stool a year ago and it eventually went away with daily miralax even though constipation was not ever an issue. Then recently it came back and has been present in all stools for about 2 months. Not a lot but it is there. She is not anemic but her calprotectin came back 295. She originally said she had no pain and then with all of this discussion she says, well now that you mention it, "I always have stomach aches and thought it was just normal." She says they are on and off and no enough to stop her day. She is fine on growth and weight. She does have the urge to go stomach pains and then often doesn't go but sometimes does. She doesn't have loose stools. My husband has crohns but was diagnosed as an adult. My question is, do all signs point to IBD...could she have all of these things and scopes still not tell us something? Can calprotectin be elevated for other things? Does it always mean IBD? Is it too early to mentally prepare her that it could be a life long disease? If she is in the mild category, can she stay in that category? What is the likelihood of that? Is there anything we can do with diet? She is a food lover and told me it makes no difference in terms of what she eats. She tried gluten free for a bit and she hated it and lost weight and nothing changed for the above so that didn't work. Thanks for any advice!!!!
 
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Scipio

Well-known member
Location
San Diego
Elevated calprotectin means inflammation, which can often be IBD but can also be caused by other things. Celiac inflammation can raise calprotectin but usually not as high as Crohn's does. Use and especially over-use of aspirin and other NSAIDs can also cause gut inflammation as can certain infections.

So elevated calprotectin does not make IBD certain, but it tells in favor of a Crohn's or ulcerative colitis diagnosis. The scopes should be the key thing in sorting this situation out.
 
Is mildly elevated mean anything different than higher numbers? We tried gluten free diet and it did not result in any changes. Thanks!!
 

Scipio

Well-known member
Location
San Diego
Is mildly elevated mean anything different than higher numbers? We tried gluten free diet and it did not result in any changes. Thanks!!
Highly elevated calprotectin is more likely to be some highly inflammatory condition such as IBD. Mildly elevated could also be IBD, but it also opens the door to it possibly being something else such as celiac or some nonspecific irritation such as aspirin.
 
My son had some similarities and now more than 2 years post start of symptoms we still don't know if it's Crohn's. Yes, there is always the chance scopes won't give all the answers, but for many people scopes give quite a bit of information. In our case, scopes found another GI issue and there were some signs of possible mild/early Crohns, but biopsies were normal. Capsule endoscopy found some ulcers and erosions in a part of small intestine scopes couldn't reach, but not severe enough to call it Crohns...yet?

Regarding diet, plenty of people do all the right things with diet and still have Crohn's. Overall it probably can't hurt to focus on anti-inflammatory foods, try to reduce processed foods as much as possible and try to eat as much variety of vegetables (and fruits) and anti-inflammatory herbs, etc as possible to help the gut microbiome, but pay attention to how various foods make her feel since some healthy foods can be triggers for some people. There is some interesting research on tumeric and Crohns. Robynne Chutkan, MD (an integrative gastroenterologist who trained at Mt. Sinai where Crohns was discovered) has some helpful info online.

ETA-you asked about Calprotectin level and whether different levels of elevation mean different things perhaps in terms of severity. If it's Crohn's, from what I have read and learned from a local support group, sometimes Calprotectin correlates with level of severity, sometimes it doesn't at all. I have read when the Crohn's is located farther from the colon, such as in the small intestine, the numbers aren't always as elevated. Our son's Calprotectin was in the low 100s twice and mid 100s once, and his small ulcers were/are in the small intestine. Also, you probably know this and sorry if it's TMI, but make sure it's the first bowel movement of the morning because that is often when calprotectin levels are highest.
 
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Maya142

Moderator
Staff member
My question is, do all signs point to IBD...could she have all of these things and scopes still not tell us something? Can calprotectin be elevated for other things? Does it always mean IBD? Is it too early to mentally prepare her that it could be a life long disease? If she is in the mild category, can she stay in that category? What is the likelihood of that? Is there anything we can do with diet? She is a food lover and told me it makes no difference in terms of what she eats. She tried gluten free for a bit and she hated it and lost weight and nothing changed for the above so that didn't work. Thanks for any advice!!!!
Hi and welcome! Yes, it could certainly be IBD, if your husband has it. Her Fecal Calprotectin is high (not terribly high though - it can be well over 1000) and it is a pretty sensitive test. It tells you if there is inflammation in the gut. An infection could cause it to go up but I'm guessing your doctor has already checked for infections if you're being sent for scopes. What I have learned over the years is that all kids present differently and they don't always have the "classic" Crohn's symptoms - bloody diarrhea. My daughter's symptoms were mainly abdominal pain and weight loss. She also had constipation occasionally but I was sure her scopes would be fine. But they showed ulcers in her colon and inflammation throughout her colon and at the end of her small intestine (in the terminal ileum). Her disease was considered mild when she was diagnosed. Her GI now calls it "mild to moderate" but she really has been lucky.

We chose to treat her aggressively to prevent the disease from becoming severe because she also has Juvenile Idiopathic Arthritis when she was 12 (autoimmune, inflammatory arthritis, which is associated with IBD) and we did not treat that aggressively enough early enough and it became severe. She has had to have many surgeries and even had two joints replaced.

We wanted to avoid making the same mistake when she was diagnosed with Crohn's at 16. So we treated her with Remicade and Methotrexate after being diagnosed and she was in remission in 8 months. So even if your daughter is diagnosed with IBD, there is a lot you can do to prevent it from progressing. Some kids stay in the mild category and respond to drugs beautifully and others do progress, but there are a lot of new medications that are very effective. I would take it one day at a time.

The main diet advice we were given was to avoid nuts, seeds and popcorn (as they can cause obstructions) and to use Enteral Nutrition (formula or shakes like Pediasure, Boost, or Peptamen Jr.) to gain weight and to help with malnutrition. There is also Exclusive Enteral Nutrition which is a 100% formula diet (which kids either drink or goes through a feeding tube) to induce remission - it's done for 6-8 weeks usually. It is very effective but hard for kids to do. Some doctors allow some food, so you can do a 10% food/90% formula diet instead to make it easier.

There are also many diets like the Crohn's Disease Exclusion Diet (CDED) and the Specific Carbohydrate Diet (SCD). They tend to be pretty strict - some kids can follow them, others can't. I'm going to tag @crohnsinct since she knows a lot about diet.

I will also tag some other parents - @Pilgrim @my little penguin @pdx

I think the most important thing to remember is that your daughter will still be a kid even if she is diagnosed. She'll be able to go to school, play sports, hang out with her friends and eat junk food (occasionally!!) and do many of the normal things that kids do. There will be bumps in the road, but you will adjust to a new normal and so will she. Hang in there!
 

crohnsinct

Well-known member
Hi! Sorry I have been away from the forum for some time.

A fecal cal at that level is really inconclusive but it sounds like you have an excellent GI in that they resending her for scopes. I am sure her father's history of Crohn's helped in this regard. This will really tell you a lot more.

Yes, it is possible to be diagnosed mild and stay mild. Plenty f people have this experience but you don't read about them on forums because they are out enjoying their lives and have no need to seek out advice. So looking online you will get a skewed view of the IBD experience.

I wouldn't get ahead of yourselves and bring up IBD with your daughter or worry about future complications etc. Take it one day at a time.

As for diet, yes. Both of my girls have done practically all of them. Most of them are pretty restrictive and some even go against everything you have read about inflammatory foods being bad for IBD etc…they just somehow work and no one knows why. They didn't work for my girls. Like meds, they work for some and not for others. It is just another therapy and one that must have a registered dietician and MD on board for appropriate balance and monitoring of disease activity.

Right now in GI circles they are advising a healthy Mediterranean diet as the best anti inflammatory diet for IBD.
 
To follow up, we recently did scopes and everything came out perfectly clear. Of course we are happy that it al looked great but now we are really perplexed. Has anyone ever had this? We sort of feel at a loss but also don't want to put her through more tests as the scope prep was brutal but stomach pains persist.
 

crohnsinct

Well-known member
Scopes don’t reach the entire small bowel. Next step would be an MRE to look at the entire small bowel…the areas scopes can’t reach. After that you can entertain the idea of crossing IBD off the list.
 

my little penguin

Moderator
Staff member
My kiddo had clear looking scopes at dx
His biopsies showed acute and chronic inflammation as well as non caseating granulomas
So crohns was dx
MRE showed mild thickening in ti
Capsule endoscopy was clear
 
All biopsies were "unremarkable" so now we are bit of shooting in the dark. She still has blood, though none were seen in the scopes. We are getting a mekel scan eventually and will do stool tests again. The mekel scan seems like a lot for my daughter when I think the likelihood is minimal. GI said they don't like to do capsule for kids.
 

my little penguin

Moderator
Staff member
Are you seeing a pediatric Gi at a university hospital ?
My kiddo had a capsule endoscopy done at age 7 .
It wasn’t any issue at all
A lot of smaller kids do them
They just make sure the MRE is clear first
 

crohnsinct

Well-known member
That's encouraging but like I said, scopes don't reach the entire small bowel. I would rest easier after an MRE.
 

Maya142

Moderator
Staff member
Yes, you definitely need some kind of small bowel imaging. Either a pillcam or MRE to make sure there isn't inflammation in her small bowel. Did the doctor discuss either of those tests?
 
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