My 10 year olds life long stomach problems

[Cantcook842]

Anyone have any ideas as feel like I'm banging my head against a brick wall.
My son who is 10 has not had a solid bowel movement his whole life. Not one.
His faeces is a clay consistency at its hardest, to almost water at its weakest.

He does not need to go many, many times. He poos just once or twice a day. They have a very strange fishy smell.

Suffers from associated stomach cramps. This is not always. He has flare ups.

During the flare ups he will lose weight, pale skin, lathargic, go to the toilet a lot and stomach pain.

Alot of the food he eats comes back out undigested.

He's had stool samples, blood tests, ultrasound so far. All come back clear. Only said lactose intolerant which I don't think he is. I think it's just the fat content in the milk.

My dad has always had the exact same symptoms. He has a diagnosis of diverticulitis. In our family we have that, crohns, ulcerative colitis and ibs. Doctors don't seem interested although I have pushed to see consultant again, Appointment is in November. They may not be bothered but they don't have to live like this

Push this with your doctor. And I mean really push. I had this with my DD for 8 months. Really fought to get her seen. Finally got a diagnosis and now they are absolutely brilliant. If you can afford to, I would book a private CT scan. PM if you prefer

Have they tested for coeliac?
You can have false negative blood tests but be diagnosed with a biopsy.
It would fit with the smell, loose BM’s & undigested food.

Coeliac disease was also the first thing that came to my mind. Has he been tested for this? He will need to continue to eat gluten until it's ruled out. Agree with PP that even if he gets a negative blood test result, push for a biopsy. Coeliac UK provide helpful advice www.coeliac.org.uk/home/

With your family history and your sons symptoms.. I would look at the GAPS diet.. exclude dairy, sugar and gluten (including grains with similar structure like oats and corn), read the GAPS book and follow the guidelines for probiotics, fatty acids and bone broth and see if your son's condition improves.

What does your son typically eat? I second what chateau above says

I knew someone who struggled like this until he was 15 - it was finally diagnosed as Crohns, and he had surgery to remove some damaged bowel and had a temporary stoma fitted to allow things to heal.

I lost contact with the family so I don't know how he is doing now or if he agreed to give up the stoma (I believe he was fond of it as it gave him his life back, he didn't want his bowel reconnected), but last I heard he'd gone from being sickly, thin, listless and depressed to fit, thriving and going out with his mates again.

On a different tack, my nephew suffered on and off in a similar way until he was 11, and was recently diagnosed with coeliac disease - in particular he was extremely pale and struggled to get good sleep. He's very well now no gluten passes through him!

It's awful for you and for him, it's so frustrating getting nowhere - my nephew is in a different country and I don't how my DB got the diagnosis, and regrettably I don't know the other family well enough to know how the doctors finally arrived at Crohns, I just know that they did. I'm no help, sorry. But keep pushing for a definitive diagnosis, wishing you all the best.

His dad is gluten intolerant /possibly celiac.
We paid privately for my son to have some intolerance tests and there was no wheat /gluten on there of any kind. Confused me a lot! But it did mention fats

I believe he was tested for celiac a few years back. Was negative. But will want them to test again

Are you avoiding lactose? Why don’t you believe that he’s lactose intolerant if the tests say he was? I’m LI and it has a permanent low-level effect similar to what you describe. As soon as I was diagnosed I cut lactose out, it took a week or so for everything to settle down but the difference is stark.

They didn't so any tests to say he was lactose intolerant. Just decided upon it

Did they do a colonoscopy as well as a MRI to check small bowel?

You need to ask GP to test for Calprotectin in stool sample. It's a marker for inflammation. Raised levels can indicate Crohn's or Ulcerative Colitis.
Hope you get some answers soon.

Hey
Sorry to hear about your son. It took me years to be diagnosed with crohns and I have had numerous ops since but had a miserable time around the tweens age.

I cannot remember the last time my poo was solid as I have short bowel too and I fail to metabolise food properly...

If I can help in any way with names of consultants etc then please dm me. All of my siblings/ sons have bowel issues also.

Oh, your poor son. I have no answers but would say please keep pushing.

I had similar issues since I was a baby that my mum never investigated, and now at age 40 I still dont have a diagnosis and it is really starting to ruin my life! Like your son, loads of stuff ruled out but no answers still.

Keep pushing!!