Crohns or eating disorder???

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Hi, my 15 year old daughter has lost 2.5 stone of weight in 5 months. Coupled with stomach pains and vomitting.  Calprotectin level is raised at 120 but everything else is totally normal.  However, recently she has been eating less and less because she says it makes her feel sick or gives her pain and is only nibbling on very small amounts of food.  I have noticed when she gets stressed or has significant upset she is automatically sick which makes me wonder if perhaps this is more a psychological thing? Am worrying that she has got it into her head that eating makes her feel sick rather than it being a physical thing?  Are these symptoms common of IBD(yet to have diagnosis). Is it common to feel that when you take a mouthful of food you feel like its stuck in your throat or that its going to come back up?  At wits end. Shes barely drinking either and at the moment is in hospital having been admitted yesterday.  Can caprotectin be raised simply just because or is it generally linked to other things?  In my mind it isnt raised enough to be causing all these symptoms but then agan i am only going by what i read and that some people have 600 plus levels.  She says she feels sick all the time.  Many thanks

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  • Posted

    Sorry you’re going through this with your daughter. I got crohns when I was 8 (now 38) & I lost a lot of weight and didn’t eat as associated eating with pain so went from being a 5 1/2 stone 8 year old to a 2 1/2 stone 11 year old. I wasn’t often sick, only when I’d been force fed (initially said I was anorexic & treated me for that before they discovered I had crohns). Her FC isn’t too high, 50 or below for a child is normal. But I would certainly push for more tests on a 120 score. It sounds like it’s more upper stomach if she’s being sick so definitely push for a endoscopy & probably a colonoscopy as well (not sure how old she is but she won’t be impressed with that bless her!) I have an 11 & 2 year old. My 11 year old has just been diagnosed with IBS & can be quite poorly & is under a gastro as keep an eye on her cos of my history. My 2 year old also has silent reflux & gerd so vomits a lot of her food up. Hopefully now she’s an in patient they’ll be able to investigate thoroughly.... 

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  • Posted

    Hi Lucie

    sounds like your daughter is having a really rough time. You too!

    Anorexia is a common symptom of IBD unfortunately. When you know that eating is going to cause much pain, discomfort and often embarrassment it becomes very difficult to want to eat. It is psychological, but it is brought about by very real physical problems. 

    Its a tough one to tackle.  I experienced exactly the same in the early days pre-diagnosis and it was terrifying. To have people say you’re anorexic and that it’s all in your head wasn’t helpful, in fact it probably made it worse for me.  It was only on diagnosis and understanding of the disease and therapy that I could find a way forward that helped me keep my weight stable. 

    Perhaps your daughter might benefit from some liquid food supplements to help with nutrition......and probably some therapy. Sounds like she needs a space all her own to work out what’s happening to her. Not eating is probably the only way she feels she can control her symptoms......which is actually quite logical.  But sadly, it’s not the answer......she desperately needs nutrition and support. 

    I hope you get a diagnosis soon and some support. I really do feel for your situation. 


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    • Posted

      Thank you for the replies. Very helpful. She won't really have drink supplements as half way through starts feeling sick although I have only tried milk based ones. Will try an alternative. She has to eat really really slowly or should feels like it is coming back up and stomach gurgles and acid rises. Or she just projectile vomits or has stomach pains and needs a loo!

      She is in hospital now so hopefully they will do the ops necessary to diagnose x

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  • Posted

    Hi Lucie.

    I know you posted a couple of weeks ago but I read about your daughter and it brought back so many pre-diagnosis memories from my late teens/early 20s. I hope she's doing better.

    I was wrongly diagnosed with an eating disorder I didn't have by my family doctor, who did no tests other than check my iron, and fobbed me off for years.

    My relationship with my family got strained (we're pretty close though) because I couldn't eat and they didn't know why. I felt like I was going crazy and no one believed me.

    In 2011, i was diagnosed with Crohns; 4 years after my first really big crash and 6 years after my first symptoms. I was lucky my dr was away and i had a fill-in guy who was great, sent me for tests and referred me to a gastro.

    I've since had a bowel resection, and now I'm on immune suppressants. I'm in flare now but had 2.5 pretty good years. I have two beautiful boys now and I work and volunteer, it slows me down and frustrates me but hasn't stopped me.

    Calprotecton score of 120 warrants more testing a colonoscopy, or mri. If they're clear it could be something like fructose malabsorbsion or celiacs.

    You're doing the right thing. Please beleive her and advocate for her so she isn't ignored. Second opinions are well worth it too.

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  • Posted

    HEllo. I have yet to get a diagnosis of crohn's but it is suspected by doctors. 

    Your story seemed to touch on my own regarding my mother, as she thought I had an eating disorder, that I would make myself throw up after every meal (although she watched me get sick without the use of my finger) 

    Listen to your child. Do not wait. Ik more than likely I have an auto immune disease. I had an upper scope. I had gastritis, duoenditis, GERD, and a hiatal hernia

    Done once I was grown. 

    From lack of vitamin absorption, I believe, my teeth are suffering. At the young age of 29 I have lost all my back teeth and my front are on the way. A little over $5000. to fix them... I'm a single mother of two children doing the best I can. 

    Go to as many doctors apts as it takes until ur daughters voice is heard. Find the problem. Do not doubt her. Listen to your child. I've been there. It sucks to be sick and have someone think it's just you. ?????? Best of luck to you! 

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