what's the first step when you suspect IBD?

I would take him to the GI and get a diagnosis rather than wait for things to possibly get worse. Since his mother has Crohn's and there is a genetic component to IBD, there is a chance he has IBD and, if so, changing diets is not likely going to be adequate to completely treat it, although dietary adjustments certainly may help.

Marcene,
So sorry that he is having trouble and especially at such a young age...when you say that you removed dairy or wheat etc...for how long did you remove them from his diet??? A day or a week might not do it, you may need to try a month or to try and do it backwards...not an elimination diet but a reinclusion diet...cutting our nearly everything but 1 food (chicken is my usual favorite)...24hrs. Tea, broth, liquids but not solids other than chicken...don't know how hard or easy it is for you and him to handle this but I would say that if you can go for a full weekend(time for his system to detox a bit), even better...then slowly keeping a food diary...add a vegetable, something easy like cucumber...and every 24hrs add just one food...see how he reacts to each inclusion...by doing it that way you may get a better, more obvious result. Keep dairy & sugars as the last inclusions...
I would say that after that if he was still uncomfortable and unwell that I would go to see a specialist but that you should still inform his pediatrician that he is having problems now.
The other thing is to get him allergy tested...sometimes the answer is simple (and sometimes not).
Good luck no matter what...
By the way, my first symptoms started with hotdogs when I was 4 or 5. Nausea, diareaha, bloody stools etc...who knows if it was the hotdog or the nitrites but every single time that I ate one (or anything with nitrites ie. luncheon meats, salamies)...I got sick...

Sharon

When/if you decide to see a GI doc, I suggest you find a pediatric GI, if at all possible. Best wishes!

I would agree that you really must see a doctor - altering the diet of a child radically could inadvertently have an adverse effect on growth. No responsible peadiatrician would put a child on medication without a clear diagnosis and you will be there to ask the relevent questions and protect his interests.

With the symptoms alone, waiting a bit might be OK, but with the family history, I would get him assessed by a good pediatric GI post haste.

Could be a gluten allergy.

I am sorry your son is going through this. However, I agree with others. Before changing his diet and attempting to "self treat or self manage," it would be prudent to get him to a GI for a proper diagnosis, so you know exactly what you are dealing with. From there, you and the GI can discuss options, and that may certainly include dietary modifications, but under the guidance of the doctor, so you know are making the correct modifications. Guessing in these situations can be dangerous. You don't want to start randomly or arbitrarily eliminating foods and then hope for the best, particularly when son's issues may not even be food related. Not to mention, with the family history there is a very good chance this is UC or Crohns. However, as others have mentioned, you could also be dealing with other conditions including Celiac disease, lactose intolerance, specific food allergies, etc. That is why it's important to find out, because if it is in fact IBD, the longer it goes untreated, the more severe it will almost certainly become. And no, you don't want to wait until "it gets worse," because by that point it might be at a stage where he is already very sick and treatment is that much more difficult. Catch it early enough, and you may be able to manage with treatment that is far less invasive or involved.

Again, the first step is to understand what you're dealing with, and then go from there.

Best of luck!

Thank you for your replies. I am out of town for two weeks and was trying to get him an appointment with a pediatric GI, but I have to wait until he can see his pediatrician and get the issues on his record before they will accept him at a specialist. I just have trust issues with doctors and so I'm trying not to let my fears play a roll in getting this figured out. It has always bothered me that I can't find a nutritionally intelligent GI and so I was trying to get him in a healthy state diet wise to make sure I was doing everything I could to keep him in a good nutritional state. It just feels weird to be seeing these emerging issues in my son when I have been there myself. I feel pretty calm about the whole thing but it honestly scares my husband to think about seeing another loved one possibly go through what he saw me go through. Just a twisted sort of nostalgia about the whole thing. I'll hope for the best case scenario but I am certainly preparing emotionally and mentally for the
worst.