Help! Behcet's Syndrome?

[rez]

My son's major symptoms are stomach pain and mouth ulcers. These symptoms can also be related to Behcet's Disease and Crohn's. Since going gluten free, he's improved, but isn't perfect. He had a terrible stomach ache last week followed by waking up the next day with 8 canker sores in his mouth. He still complains of tummy aches, but they don't wake him in the night anymore and they're definitely not to the same degree. Things are still not "perfect" though. So, how do I know if he's getting trace amounts of gluten causing the flare-ups, or am I treating the wrong cause???? So frustrating! Should I have him scoped to rule out any other diseases or just put him back on gluten and see what happens. I'm so confused!!!!!!!! I want that black and white for sure diagnosis! HELP

[azmom3]

I personally am for the scopes if you believe there are multiple things you need to look at in order to determine HOW to treat him. I see it as the lesser of two evils....go through it now, but get answers and treatment quickly, (assuming you have great samples and someone who knows what to look for), rather than trial and error over a long period of time, possibly worsening symptoms and/or damage. My son is having his endoscopy tomorrow looking for a couple different things, both of which are treated differently.

I know many people on here would disagree based on their knowledge, situations, etc. That's what's so great about this board though is that you can sift through and take what seems valuable to you and make the best choice for your particular situation. I have learned so much from so many different people on here. You are the parent and even though the decision may be difficult, you will hear pro's and con's about everything and at least be able to make an informed decision.

Good luck with whatever you decide to do.

[Ursa Major]

Rez, I did a search on Behcet's disease, and this jumped out at me:

Only rarely does Behçet’s disease cause inflammation and ulceration (sores) in the digestive tract and lead to stomach pain, diarrhea, constipation, and vomiting. Because these symptoms are very similar to symptoms of other diseases of the digestive tract, such as a peptic ulcer, ulcerative colitis, and especially Crohn’s disease, careful evaluation is essential.

It's a quote from this site: Open Original Shared Link (this is the Behcet's disease page).

Canker sores are a common symptom of celiac disease, I used to get them all the time. On the other hand, stomach aches are a very rare symptom of Behcet's disease.

Crohn's is known to benefit from a gluten-free diet, and is often caused by celiac disease.

Anyway, just thought I'd help you sort things out. A biopsy might be a valid idea. On the other hand, it is often negative with young children despite having celiac disease.

Have you considered Enterolab? It would show whether your son reacts to gluten, if he has the genes, but would also rule out gluten if something else is the cause.

It could also be another intolerance altogether, or a combination of gluten intolerance, and other intolerances.

I hope you figure it out! It must be hard to see your child suffer, and not knowing what to do about it. I guess I put my mother through that, and eventually everybody gave up on me, and declared my many problems to be psychological. Until I figured it out at the age of 52.

I am sure you won't give up that easily, and you obviously take your son's symptoms seriously. You're a good mother.