Crohn's Disease Forum » Your Story » Confused Possible Diagnosis

08-11-2015, 10:57 PM   #1
Join Date: Aug 2015
Location: Denver, Colorado
Confused Possible Diagnosis

I'm very confused and am coming here to ask the experts. Its a long story and I will try to give the short version.

My 13 year old son has had multiple food allergies since he was a baby, he's outgrown many and is now allergic to only cashews, pistachios, hazelnuts, and sesame. He also has cold urticaria (he gets hives from cold- usually cold water), mild asthma, eczema that has gotten much better in the last 10 years. He's very atopic.

In March he was diagnosed with Mono. It was a pretty severe case. In May he still wasn't better (extreme fatigue, not eating, mouth sores) and his dr. ran a lot more blood work. His sed rate and CRP raised some eyebrows and required follow up. He was also anemic (and does have thallesemia). We ruled out leukemia and lymphoma as well as few other things. Next stop was either GI dr or infectious disease. Because of some past GI issues (mostly diarrhea and bloody/mucousy stools) we started there. In the meantime school was out and the stress level evened out and he started perking up. We went to GI dr. and they did an endoscope and colonoscopy.

Here is where it gets really interesting. Colonoscopy revealed a very large juvenile polyp which was removed, as well as some inflammation in terminal ileum and a little inflammation in transverse colon (I think, not 100% sure of that). He also tested positive at that time for c-dif. Two months later most of his labs have improved at least slightly. His sed rate is a little better, CRP is slightly improved, fecal calprotectin went from 2000 to 1500 (still waiting on new c-dif results). In that time we have treated with a round of flagyl and removed the juvenile polyp, but nothing else has changed.

We are still waiting on having an MRE and will do the Prometheus blood test in a couple weeks. My son's only symptoms at this point are smelly gas/ BM, blood in his stools (sometimes watery), and still slightly fatigued (could be from mono and anemia). He typically goes to the bathroom 2-3 times a day and can hold it just fine most of the time. He doesn't have abdominal pain or cramping (or if he does its minimal- usually less than 30 seconds worth).

So there is the background here are my questions:

Does this sound like Crohn's? (I'm in denial- could it be eosinophil related?)

I am having all of his records sent to his allergist/ immunologist because I think it's more than just just crohns and want fresh eyes looking at it... plus he clearly has autoimmune issues. Any suggestions or thought about what to ask/ discuss with her?

Does the severity (or lack thereof) seem to warrant treating with strong drugs (dr mentioned 6-MP)? The idea of putting my son on most of these drugs scares me, especially when he feels/ acts fine.

I am currently researching AIP, SCD, Paleo, Wahls, etc but any ideas how to get a 13 year old boy to buy into giving up sugar?

How do you answer your kid when he's tired of doctors and wants a new body or immune system? :'(

Thanks so much!
08-11-2015, 11:17 PM   #2
heartsnstars4e's Avatar
Join Date: Aug 2015
Location: oceanside, New York

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He could be tired from the c diff. If he has c diff and the loose movements he had in the past why has no one given him medicine for it. He should start vancomycin if it comes back positive. That's my opinion. I have had c diff recently. I also have many allergies too. He is to young to be having bloody loose stools sometimes. I think you need to look into that. The blood loss however small it might be maybe causing him fatigue. Good luck I wish him the best.

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