Dx- Ciliac Disease Or Stomach Migraines?

[Bootsz]

Hello all. I know this diagnosis if celiac disease can be relief to those with sick children, and not a clue until this diagnosis what's causing the ilness. My son, however, is an otherwise healthy 13 yr old. He has been gluten free for over a year, when we got this Dx. He's never been small or thin. He is currently 6'2", 200lbs.

Here's our problem: he is still vomitting on cycles, with diarhea, abdominal pain, & occasional headaches.

He has had 3 endoscopies, with the last two being capsule endoscopies, where he swallowed a camera in a capsule. He just had one last week. The pediactric gastroenterologist is now saying it might not be celiac disease, even though he has lesions in his lower intestines. Now he's saying it might be stomach migraines! Anyone else still sick after being gluten free? His nausea, vomitting and diarhea seem to be in cycles that last 2 to 3 days.

I hope someone out there can help me!

Thanks,

Bootsz

[shayesmom]

Hello all. I know this diagnosis if celiac disease can be relief to those with sick children, and not a clue until this diagnosis what's causing the ilness. My son, however, is an otherwise healthy 13 yr old. He has been gluten free for over a year, when we got this Dx. He's never been small or thin. He is currently 6'2", 200lbs.

Here's our problem: he is still vomitting on cycles, with diarhea, abdominal pain, & occasional headaches.

He has had 3 endoscopies, with the last two being capsule endoscopies, where he swallowed a camera in a capsule. He just had one last week. The pediactric gastroenterologist is now saying it might not be celiac disease, even though he has lesions in his lower intestines. Now he's saying it might be stomach migraines! Anyone else still sick after being gluten free? His nausea, vomitting and diarhea seem to be in cycles that last 2 to 3 days.

I hope someone out there can help me!

Thanks,

Bootsz

I am not an expert on abdominal migraines or cyclical vomitting....but my dd has had bouts of this. There's also a low-grade fever involved. And there has ALWAYS been a "trigger" for it. The worst ones for us have been set off by artificial sweeteners and food colorings. Definitely not a Celiac problem...but this is consistently the case when it occurs to her.

Our bouts last about 12-18 hours. But I've read that abdominal migraines can last up to 72 hours. I'm a bit confused though because from what I've read, abdominal migraines are something diagnosed in children under the age of 9? I've only done a small amount of reading on this...so perhaps the diagnostic criteria has expanded. It's possible....after all, Celiac used to be considered a "kiddie" disease not so long ago. So I guess I was just wondering.....

I'm not sure where your pedi GI is going with this...but I'd definitely be asking a lot of questions. Is your son dx'd via biopsy? Have other food intolerance/autoimmune issues been ruled out? And how has your son done on the diet over the past year? Has it helped? And can you get a second opinion? I'd hate to see you give up the gluten-free diet if your son is a biopsy-proven celiac just to later find out he not only has Celiac, but also another completely separate condition. It seems counterintuitive to scrap one formal diagnosis until knowing more about the origin of these symptoms.

[swalker]

Hello all. I know this diagnosis if celiac disease can be relief to those with sick children, and not a clue until this diagnosis what's causing the ilness. My son, however, is an otherwise healthy 13 yr old. He has been gluten free for over a year, when we got this Dx. He's never been small or thin. He is currently 6'2", 200lbs.

Here's our problem: he is still vomitting on cycles, with diarhea, abdominal pain, & occasional headaches.

He has had 3 endoscopies, with the last two being capsule endoscopies, where he swallowed a camera in a capsule. He just had one last week. The pediactric gastroenterologist is now saying it might not be celiac disease, even though he has lesions in his lower intestines. Now he's saying it might be stomach migraines! Anyone else still sick after being gluten free? His nausea, vomitting and diarhea seem to be in cycles that last 2 to 3 days.

I hope someone out there can help me!

Thanks,

Bootsz

Have you thought about getting him to keep a food diary? That's what we finally had to do to nail down my grandson's soy intolerance. If what he's reacting to in only an ingredient in other foods in can be an invaluable tool.

[ang1e0251]

A food/symptom journal is an excellant way to nail down seemingly unrelated symptoms. It does sound like some other food is getting him. I could be wrong, I'm not a dr but I do know when I have a round of symptoms, it has always been something's "getting" me. I have a real problem with artificial sweeteners also. And the food dye, don't get me started on the kids with problems from that.

With kids his age, it can be tough to figure out but you'll have to be a detective. I don't have a lot of faith in dr's always being able to pinpoint specific problems. A Mom has better instincts about her child. I'll bet if you keep the journal, you will detect a pattern you can act on. So many of us have multiple sensitivities and it sounds like your son may also. As tough as it is for you to spot it, it must be incredibly hard for a dr when the tests don't "spell" it out for them.

Keep us posted. There might be something that will speak to someone here with a similar problem.