Please help: does this sound like Crohn?

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Linda Kurt

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Jun 27, 2015
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Hello, I am new here. My son, 13 year old,has been suffering from very vague symptoms that have been getting progressively worse over the last 3 years:joints pain, abdominal discomfort such as gas, bloating, loose stools (but not diarrhea). He is very skinny (less than 3rd percentile for weight)he fell off his growth curve.
He had multiple MRI tests that showed inflammation in his bones and doctors diagnosed CRMO. He had a full bloodwork with CBC differential and CRP done 3 mo ago which was normal. The doctor decided to do FCP because CRMO and Crohn share the same genes apparently, and It came back as elevated at 298...

Anybody had the same symptoms? Any advice? We were given strong NSAID to treat CRMO and I wonder if that affected FCP level... But in any case, he does not have diarrhea and I think his abdominal symptoms are diet related... But ths FCP made me worry. I see there are a lot of smart parents on this forum. Please share your wisdom! Is this a high number? Does it sound like IBD? If so, can it be controlled without meds? Could it be something else? Oh, and he does get mouth ulcers quite frequently... I know it is one of the symptoms of Crohn... He is very skinny and short for his age, I want to make sure he growth to his full potential. He has not even started puberty yet...
 
298 falls in the ''positive'' Inflammation category, but its a low value. What is the name of the NSAID he's been taking and does it take them on a regular basis? NSAID are known to be bad for the digestive track.

with all the issues and symptoms you describe, I suggest you get a referral to a GI. this dr will be able to evaluate your son and ask for further test if needed. Blood works are not reliable for all. They are of no help in my case to determine inflammation at the early or medium stage, only nails when I am obviously extremly sick.
 
He was taking indomethacin 75 mg a day for two weeks. I took him off it now. He gets really bloated, gassy, but he does not have diarrhea, he rarely has BM more than twice a day. However his stool is usually very loose and greasy looking which to me suggests more some kind of food malabsorption... Something is definitely going on. I just don't know what...
 
If your concerned then he would need to be seen by a ped gi.
A fecal cal can't dx crohns
It also can't be treated by just diet for kids since they tend to be more severe
Juvenile spondylarthritis causes joint issues and had mild gut inflammation that sometimes is Ibd sometimes not
Does he see a Rheumo ?
A scope and mre of the intestine is the gold standard for dx .
Which you would need a GI for .
A lot of GI issues over lap with crohns in terms of vague symptoms
DS never had bloody diarrhea at dx
He was constipated had abdominal pain slow weight loss and poor growth
All of his bloodwork looked nearly normal
 
Welcome to the forum, but sorry to hear your son is not feeling well. These symptoms could suggest CD, but like the others have said, it could be something else too. I agree it's time to see a GI. The fecal calprotectin test adds another piece to the puzzle, along with physical exam, imaging (MRE), and bloodwork, but scopes with biopsies generally confirm a CD diagnosis. Keep going with the investigations and you will get to the bottoms of his issues. I hope he feels better soon.
 
298 is elevated but not to the freak out point just yet. NSAID's can raise FCP. As a matter of fact pre dx, my younger daughter's FCP was 1134 and she had only taken 3 Motrin the previous month and her doc had us pull all NSAID use for two weeks and retest.

Elevated FCP is specific to the GI tract but there could be other causes besides NSAID use and Crohn's. Celiac could be another cause, although you do no have to have an elevated FCP with Celiac. His symptoms certainly fall within the Celiac realm so I would want to pursue testing for that as well. Your ped or GP can start that blood testing. Although I have heard that blood testing can be negative but scopes reveal Celiac.

Lots of GI causes for his symptoms. Unfortunately what you are learning is it takes a long time to uncover the cause and you are going to have to be patient.

Good luck and keep us posted.
 
My son also never really has diarrhea, but he does have very soft mushy stools 2-3 times a day, in large amounts. Right now his biggest symptoms are mouth ulcers and lack of growth. He is 13 also, weight 74 lbs and is 55inches tall. He was diagnosed by a pediatric GI via scopes. Have you seen a GI specialist? P.S. Prior to scopes his FC and blood work did show inflammation although I don't know the numbers off top of my head....
 
Hi WM! So sorry for all you are going through. Our experience was that my son (12at the time) stopped having torpedo poop & was pooping in pieces, never diarrhea, did not gain weight, looked pale for a year. We were in and out of the Dr. office. In his defense, there was nothing in the blood work. Inflammation test were normal, he wasn't anemic etc. the dr thought I was "looking for problems":ybatty: Needless today we don't go to him anymore. So from there we were 2 months into a 6 month wait to see a pediatric GI when he developed a fistula. Got an appt with a ped surgeon. It was at that appt he said, "I hate to tell you, but he has Crohn's, we will get your appt with ped GI moved to next week. They will do 100 tests to be sure, but unfortunately it will come back as Crohn's disease." So that is what happened.
I am still kicking myself 3 years later for not getting to the bottom of things sooner. I knew something wasn't right, but everyone was telling me to listen to the dr BECAUSE HE's THE DOCTOR. But really I should have listened to my gut. Hopefully you will take your son to get things checked out and it is NOT Crohn's.
Keep posting...the great parents here are so knowledgable and supportive...I don't know how I would have made it through with out them!
 
Thank you so much for all your responses!!!! My DS has not lost any weight, but he is just not gaining... We do have celiac in a family and we eat mostly gf diet... I am just torn now, because his joints hurt and I don't give him Indomethacin that was prescribed by his Rhemo (we saw Peduatric Rhemo, so he excluded arthritis but Dx CRMO and wanted to check him for IBD). Which foods did you find work better for IBD? Until we do all these testings, I want to feed him right. Do you think it is ok to give him Advil for his pain? He has greenish stool that float once or twice a day, but other than that has no symptoms of GI
 
No, don't give him Advil/ibuprofen. We just give Tylenol, use a hot water bottle, warm baths, etc. As for diet, I wouldn't change too much until the testing is done, but a low residue diet might help a bit... Low fiber, soft cookies veggies, peeled fruit, no nuts or seeds, etc. Hang in there!
 
Yeah ibuprofen is an NSAID. Bad for the gut.

Who is celiac? Some one is the household? Even a little gluten could cause issues in a celiac. If he were to have it, it cold be hidden in so many things...vitamins, supplements, meds...I hear some deli meats have gluten in them, maybe unintentially glutened at school/friend's house etc. But if you have Celiac in the household you probably know all this already.

Paging Mehita. She has a son with Crohn's and Celiac.

As for diet, with an inflamed gut it is basically low residue and whatever makes him feel good. You could try some Boost or Ensure shakes as they are about 250 calories and have a lot of nutrients in them. So much so that upon dx some people go on an all liquid diet for 6-8 weeks to knock out the inflammation and they gain weight to! More on that if you get a Crohn's dx. If you are interested look for Exclusive Enteral Nutrition threads. I think there is a treatment section for it. Not sure if there is gluten in them so you may want to check.
 
I know you're not giving this to him now, but just fyi - Indomethacin is an NSAID that is particularly hard on the gut. It could have caused some of his gut symptoms. My daughter has arthritis and lasted 3 days on it before it caused major gut symptoms and she had to stop it.

I would definitely take him to a ped GI!
 
Hi Linda... from what I've read it doesn't look like a Celiac panel has been run? An elevated fecal calprotectin can occur with Celiac. Be sure he's eating gluten at the time of the test.

I second what all the others have said about trying to see a pediatric GI. It could be so many things and a GI will be able to help you narrow it down further. I think the important thing right now is to get whatever it is under control so he can have a normal puberty experience, which is critical for achieving maximum growth.

I would do anything but NSAIDS for pain mgmt right now and not change too much else until you know more. I know I've fallen into the viscious cycle where we would try something different, it would help, he'd feel better, I'd cancel the appt, and in reality we were just postponing a dx and proper treatment. Keep a journal, food diary, track symptoms and then look at it over time.

Keep us posted on how things go.
 
I recommend that you get a diagnosis from a GI before seeking treatment. It sounds like your son is in a dire situation, so it might be in his best interest to get professional help to get him up to a normal weight. After that, you could use the specific carbohydrate diet as a treatment method.

I'm no doctor, but I have managed my Crohn's for five years with the Specific Carbohydrate Diet. Haven't been to a doctor's office in ages, and I have never been healthier. I had the same symptoms as your son, except I was never told that I had "bone inflammation."
Here is my story if you're interested
crohnsforum.com/showthread.php?p=873900#post873900

I hope this helps you. Best wishes.
 
Hi Linda,

I just looked up CRMO as I didn't know anything about it. Yikes! It is extremely rare eh? Even more rare for boys...a 1 in 6,000,000 chance?

I did find a teenager who has it who started a website. He uses Humira to control it with much success but it was denied by insurance.

I guess maybe the very small silver lining is if you do get a Crohn's dx, Humira could treat both.

Which doctor is directing all of your testing at the moment? Who thought to pull the FC?

A lot of people around here feel their Rheumotologist is instrumental as a member of their care team. Sounds like you probably already have a good one. I am hoping they have an equally as good GI to help with the GI issues.

:ghug:
 
as i read here about CRMO : http://www.aboutkidshealth.ca/En/He...-Recurrent-Multifocal-Osteomyelitis-CRMO.aspx

they mention CRMO can be associated with inflammation of the bowel/colitis or psoriasis disease. Your rhuemy suspects IBD and I find it questionalble that he/she has prescribed NSAID before the results of further gut investigations. NSAID are a big no in gastroenterology disease and can trigger or worsen episode of disease. My Gi only authorizes Celebrex as anti-inflammatory for a maximum of 2 weeks and in the past I have been refused NSAID prescriptions from other doctors because of my crohns.
 
DS Rheumo prescribed more than one set of NSAIDs for DS at arthritis even after he was dx with Ibd.
Gi was ok with trying them to see how things went
It was a group effort to find relief for DS joint issyes which we are still working through
DS wasn't able to tolerate them without GI distress
 
With celiac disease in the family and your son being on a mainly gluten free diet I would request testing for the celiac disease gene.
 
He is positive for one gene DQ8, which mrs do he has less than 3% chance of developing w disease...

He did a celiac panel 2 years ago and no antibodies... But you are right-we have a gf duet 90% of the time
 
Actually, I am reading now that NSAID could affect calprotectin level. But is it possible they gave increased it by that much??? What do you think? Btw, I removed gluten completely and dairy from his diet and he feels much better...
 
Using an NSAID can definitely increase FC for some people but it doesn't always.

For example, both my girls have Ankylosing Spondylitis and have been on NSAIDs for years.
My younger daughter who has IBD had a FC of 486 when it was highest while my older one (who doesn't have IBD) had a FC of 36 even while on NSAIDs. Both girls have been able to tolerate NSAIDs with mostly minor gut issues (and they have really helped with the arthritis pain).

I think it really depends on the person.
 
Just my two cents, but with a family history of both Celiac and IBD in your family, and with the symptoms of each disease being so similar, you may want to reintroduce gluten and run a Celiac panel simply to rule it in or out. You may be treating what you think is Celiac, and getting temporary relief, but at this point I don't think you can entirely rule out IBD yet. Right?

We kept thinking my son was getting glutened, when in reality his Crohn's was running rampant. It delayed treatment and left him very, very ill and in the hospital. Not fun.
 
Mehita! Thank you! Good idea. But don't you think that calprotectin is not high enough for the crohn? I thought that they usually get higher numbers. No? Like in 1000?
 
During the time I mentioned above when we thought DS was getting glutened, his fecal cal was 171. So that was during untreated Crohn's.

During his worst flare with 15 trips to the bathroom a day, nausea, and losing weight, his fecal cal was 1332.

I don't know if that helps you any...? Your son may just be in the early stages of something? Or maybe fecal cal isn't a good indicator for him? All things that a GI can help figure out.
 
I forgot to mention, another reason to know for sure on the Celiac is that with a double dx, a gluten exposure can sometimes trigger a Crohn's flare in some people since damage is being done to the villi in the small intestine. So, down the road, while I truly hope it's not the case that you find yourself with a double dx, it can be very important to know what you're dealing with when you're dealing with something. You don't want your kiddo on a round of prednisone when it was really a bread crumb that is the source of the problem. KWIM?

Scopes with biopsies of BOTH diseases is going to be important in your case.

Clear as mud, right? ;)
 
Thank you for sharing! So your DS was celiac first? And even though he was in gf diet he developed Crohb? How is he treated now? Is he under control? Mess all the time or during flare ups only?


Mehita said:
During the time I mentioned above when we thought DS was getting glutened, his fecal cal was 171. So that was during untreated Crohn's.

During his worst flare with 15 trips to the bathroom a day, nausea, and losing weight, his fecal cal was 1332.

I don't know if that helps you any...? Your son may just be in the early stages of something? Or maybe fecal cal isn't a good indicator for him? All things that a GI can help figure out.
Click to expand...
 
I am just confused... I want to get the right diagnosis for him... I removed gluten and dairy and he is much better already... Stool completely normal... Is that something you could potentially see in IBD? I am giving him Advil to control for pain instead of Indomethacin...
 
IDK about the IBD necessarily but a milk protein allergy could also raise fecal calprotectin results so it is entirely possible that you are not dealing with IBD here. The coincidence would definitely have me wondering.

However, IBD can wax and wane and the coincidence could be just that. I would keep that appointment with the GI and get some definitive answers so you know for sure what you are dealing with.

The step down to Advil was probably a good move. Weaker NSAID but might still give him a little pain relief.

Glad he is feeling much better.
 
Yes, I read about cow milk allergy. And he loves dairy, actually, dairy used to be 60% of his diet (cereal with milk in the morning, yogurt for lunch, he would drink a cup of milk with dinner and some dairy snacks during the day...) he had cow milk as a baby but outgrew it.., I thought he was lactose intolerant because he always felt worse after eating pizza, but now I am not sure if it was dairy or gluten... Or both? Could lactose ontolersnce increase high calprotectin?
 
Linda Kurt said:
Thank you for sharing! So your DS was celiac first? And even though he was in gf diet he developed Crohb? How is he treated now? Is he under control? Mess all the time or during flare ups only?
Click to expand...

Actually, he was dx with both at the same time via blood work and biopsy, but his GI wouldn't officially declare Celiac until three successful months on a gluten free diet. In his case we removed gluten based on positive blood work and scopes and he was a different boy in a matter of days. He felt well for two years on just a gluten free diet before his first official Crohn's flare. The GF diet tricked us into thinking all was well, when he really had simmering inflammation during those two years of untreated Crohn's which led to a stricture that had to be surgically removed.

He's tried Pentasa and Azathioprine with no success. After a third hospital stay, he was switched to Remicade and has been in remission ever since.

Again, based on your family history, his positive response to going gluten and dairy free, his elevated fecal cal, I think you've got something going on, but you need to get him seen to start ruling some things out. Take out the confusion.
 
Thank you all so much!!!!
I am waiting to see a GI, but for now I took him off gluten and dairy and his stool is well formed now, no diarrhea. It is greenish in color and is covered with white seeds (like rice). I am freaking out.., what could that be???
 

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