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Please help me!

I don't know what is wrong with my 13 year old son. About a year ago he started complaining of severe stomach pain. We had just moved and had been eating alot of pizza. I thought it was just that. It continued a month later and he said he almost passed out a couple of times on the toilet from the pain after the pizza. Obviously I stopped giving him any pizza at all. His pain continued so I took him off gluten for a week (I have been gf for 6 years now due to Celiac disease), his stomach felt amazing, no pain! After about 9 days he ate gluten again and the severe pain and diarrhea was back. It messed his stomach up so bad he couldn't eat for 3 days! His pediatrician said she didn't even need to test him, just don't give the kid gluten again. Fast forward to this past summer, he was doing great gf and his stomach started hurting again. His bday is the end of June and I particularly remember him not wanting to eat at his favorite type of restaurant (Mexican), due to it killing his stomach the past couple of times. This went on and off the whole summer. He was still active and playing, and eating his normal foods. August came and his stomach just hurt him so bad, he just sat on the couch all day long. He is normally bouncing off the wall with energy. We homeschool and don't start till the day after labor day, so it being August wasn't a reason for any stress. His pediatrician did an x-ray and said his whole colon was full of stool! I didn't even know he was constipated! She put him on Senna and told him to drink alot of water. He did that religiously, including prune smoothies once to twice a day. He was moving his bowels every day, sometimes twice a day. His pain in his main lower stomach is still there. I take him back to the Dr and she said same thing, constipation. I said I want to be referred to a specialist. We went later that month and he was the oddest Dr I've ever met! Talked about how small he was and how he needs to gain some muscle to get a girl and fight with his brothers, he needs to eat nothing but egg whites, chicken with beans soup, and apples for an entire month! Told me if I ate gluten I wouldn't be so overweight. I wish I was making that up! BIZARRE Dr indeed! I'd rather both be in the hospital from gluten,but thanks specialist for telling me that! Anyway, he wanted to do a scope in 2 days, but I didn't want someone that I didn't feel comfortable with touching my son. I start him on the Makers Diet and 2 days he is feeling amazing. We are going shopping and he wants to go to eat a burger, said he was craving it sooo bad. The kid is so skinny we get happy when he wants to eat. Well it was a horrible painful night for him. He ate a bacon cheeseburger on a gf bun and french fries. He had severe diarrhea several times that night and the passing out pain again ☹. He's been on the SCD diet for 10 days straight now. Says his stomach feels better, but is still hurting. 3 days ago we started miralax per his Dr . He is pooping a couple times a day, but his lower stomach is still hurting him alot. I took him back to his pediatrician today and she didn't even x-ray, just palpated his stomach and it wasn't sensitive to the touch. She said she thinks it's just constipation. He eats like a bird and barely drinks water, he will drink smoothies twice a day. And I just finished his SCD yogurt. Does this sound just like constipation to have that much pain in his lower stomach? I'm so scares he's gonna have a ruptured bowel or something. Sorry so long, thank you for reading.
 

my little penguin

Moderator
Staff member
Did you see a pediatric Gi at a large university children’s hospital ?
If not please go see one
If he is underweight and not growing (small for his age ) there are reasons
Limited diet randomly trying to figure it out without a good pediatric GI can be a disaster as to what is causing what
Could be celiac ,could be something else
Constipation can cause a lot of pain
It can simply constipation but constipation can be part of crohns -

See a good pediatric Gi
Follow their advice for diet changes
They may want bloodwork /stool samples /scopes
Imaging

Have you tried kids boost or pediasure ?
Both can add extra weight which is needed for growth
Kids with inflammation tend to weigh less
Eat less
Get tired
Grow less

Hope you can get into a good pediatric Gi soon
 
Honestly yes, it could be constipation. But what is actually causing the constipation? Crohn's can cause constipation.

It sounds very much like my son, although he is a normal weight. I was able to get a scope because his sister has Crohn's although it looked like it was just a constipation problem. Scopes showed Crohn's.

With a history of celiac in your family, I would push for diagnostic scopes with biopsies.
 
He hasn't been to a pediatric gastroenterologist yet, just one that was about 45 minutes away that accepted our insurance. Not a pleasant experience with him. I asked about a pediatric gastroenterologist previously at his pediatrician and today also, she said she would definitely send him to one if it continues...
 
No, not yet.
I also forgot to say that he has always been on the small side, 5th percentile for height and weight. Same growth curve as our oldest son who now towers over us. I just worry about it affecting his future growth.
 
I know this must be really frustrating.

Consider taking a break from dairy, and see how it goes.

Even if this or something else relieves symptoms, get to the bottom of it.... Dr, blood work, MRI or preferably scope...

FYI On the deep fried front for myself, I have largely narrowed it down to oil type, oil freshness, and what’s cooked in it. Even an OK oil that has breaded things cooked in it, but not changed oil for a few weeks will give me trouble. (Washroom before I finish dinner). First day or two fresh oil, no problem. Best fry oil I’ve found is coconut oil.... pretty rare.

Best wishes.
 
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No, not yet.
I also forgot to say that he has always been on the small side, 5th percentile for height and weight. Same growth curve as our oldest son who now towers over us. I just worry about it affecting his future growth.
We have a large crew too, I'm a mom of 7, and it is a comfort that he follows a growth pattern that runs in the family. It is a good way to monitor growth. We have kids that tend to grow in the 90th percentile for height and weight for several years but because they are high on the curve it does take a huge drop to garner attention from a doctor. "But they look great!"
Be the squeaky wheel to get a referral, but remember that these things can take months. It's a long road.
 

Maya142

Moderator
Staff member
I think seeing a pediatric GI is definitely a good idea. Even if it is simply constipation, they can help you develop a plan to deal with it properly, so he doesn't have to suffer so much. Constipation can cause a surprising amount of pain.

Given the family history of Celiac, I also think they should at least do blood work and stool tests, and perhaps scopes, if something concerning is found. You won't know if it's Celiac though, unless he's eating gluten for a while before doing scopes. I know it sounds crazy to give a kiddo something that hurts him, but it might be necessary to figure out what is going on.

There are blood and stool tests which can measure inflammatory markers like CRP and ESR and Fecal Calprotectin. Fecal Calprotectin, which is a stool test, is the most accurate because it tells you if there is inflammation in the gut specifically. CRP and ESR, which are blood tests, tell you if there is inflammation somewhere in the body. They're less specific because they can go up if your child has a cold or some sort of virus, not just if there is inflammation.

Without further testing, it's hard to tell if it's Celiac, gluten intolerance, Inflammatory Bowel Disease (IBD - Crohn's and Ulcerative Colitis are both types of IBD), Irritable Bowel Syndrome (IBS) or something else entirely.

Do you have an appt. with the pediatric GI yet? Sometimes it can take months to get in, so I'd make it ASAP.
 
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