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Diagnosis

Hi is it possible to have biopsies from the a colonoscopy and endoscopy be normal but still have Crohn's disease in the small bowel. My daughter is 12 years old. waiting on the MRE wich will happen in two months. The surgeon says despite her simptoms it is unlikley with the normal pathilogy.
Her symptoms
-Fever and slightly raised CRP level (normal 10 hers 13) after birth.
-10 months -2-years whent from 75th percentile for height and weight to bottom of chart
-15 months 3 root canals despite healthy diet
- 3 year got growth back to 20th -30 percentile with iron supplements (but her blood levels in normal range)
-2 years - now Chronical constipated even when not on iron- until today even though managed better with movicol and magnesium  citrate
- 8 years chronic abdominal pain started, with pelvic floor spasming and bladder disfunction, worked on impaction resolved blader problem and pelvic floor spasming but not abdominal pain
- botox in anal sphincter did nothing
- 8 1/2 to 9 extream abdominal pain no school, no help from doctors. Took her off all dairy, she was much better with only occasional bouts of pain until..
-11 1/2 year of age, gradually worse after three weeks of bad pain saw a paediatrician who put her on L roitery probiotic wich helped  her not be woken up by the severe pain.  When i couldn't find it in the shops for a bit she was in a terrible state again, woken at 2am 4am with severe pain that would last 6 hrs or so. No panadol or ibuprofen would help.
- three months ago it was so bad she didn't eat or drink for 4 days because it made her feel nausiouse and in pain. We went to hospital they said function bowel pain.
- They did a fecal calprotectin test and bloods. Her boold were normal, normal CPR
fecal calprotectin came back 6 weeks later as 140. So normal is 0-50. So hers definitely high.
- Her surgeon called this almost normal though. He also said  she would definitely have raised CRP, wich I have read is not true significant number of  Crohn's patients.
- Taking anti spasmodic, naproxen and panadol takes an edge of th pain but does not bring it down much. Tramadol does help her pain but then is terrible for the constipation.
-for the last 6 months she gets blisters on her hand. I put these down to the indoor and outdoor rock climbing we do, but she only leaves the house now for tests and doesn't do much and is still getting them. I looked theses up and found they  can be associated with long-term Crohn's disease.
- last three months she gets exousted
-last 6 months she gets some back
- her pain is mostly generalized around bellybutton but sometimes on left side.

I am so confused, this symptom picture suggests to me there is more going on than functional bowel pain.
But they found no inflammation in the biopsies from the colonoscopy and endoscopy  despite the fecal calprotectin test?
W had her NDA profiled a few years ago. She has three times the normal risk of having Crohn's.
So far no one has found IT though. Are there any other tests we could do?
3 Responses
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6543835 tn?1468844035
have you ruled out celiac? regardless, eliminate gluten, dairy, red meat, and highly processed foods. Give her whole foods that are easy to digest; steamed chicken, white fish, steamed veggies, and fruit. get a good probiotic (id go with at least 50 billion cultures).
Western medicine is absolutely awful when it comes to digestive disorders. They pretty much know nothing. I would find a holistic physician or one that practices functional medicine. You need to go the alternative route, cuz your regular doctor wont be able to do anything. All they do is prescribe medicine that isnt going to help, in fact it will probably make things worse. 100% no antibiotics, not in meds, not in food. They completely destroy the gut.
Try this test. First thing in the morning before she eats or drinks anything, have her gather some spit and spit in a clear glass of water. wait 15 minutes and if the spit "grows legs" as in it kind of looks like a jelly fish. its possible that she has a candida (yeast) overgrowth. If this is the case, she needs to be on a low fodmap (google this) diet. on this diet, she will hopefully see some relief in a few weeks.
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Avatar universal
She gets minor fevers on and of, she sleeps hot, sometimes sweating profusely
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2 Comments
Yes, sometimes the diagnosis of Crohn's can be very tricky. But this is very unusual. Continue the blood work with followup biopsy/imaging is the only thing you can do, in the mean time. Take care.
Thank you.
Avatar universal
she also gets blood shot whites of her eyes and ulcers in her mouth
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