Trying To Figure This Out And Would Love Some Input

[dotcommom]

First I want to say thank you for all the great information on this site. I've done a lot of lurking and have learned so much.

My question is in regarding to my 10 year old son. He's complained of stomach aches/cramps for at least two years. We've been told by several doctors is was just stress/nervous stomach. I had him tested for wheat allergies, but not specifically celiac, and he was shown to have no allergies to wheat. Besides the stomach aches he's had crazy mood swings for over a year - giants fits of anger to the point where I've had to physically restrain him to keep him from hurting himself or damaging things.

At the end of August I decided to try having him go gluten free to see if it made any difference. Within 24 hours his stomach ache went away - a miracle really - but even more amazing to me these crazy meltdowns stopped. About three weeks into being gluten free he ate a bowl of mac and cheese (with gluten) within about an hour and a half he threw up and had diarrhea. I thought I had it figured out.

Since going gluten free about 6 weeks ago his stomach has been on the whole better - however (and this is where my question is) about once a week he'll feel really sick again and he throws up and has diarrhea. He rarely threw up before going gluten free, though he had almost constant stomach pains. A few times after he'd gotten sick we realized we'd accidentally gluten him, or there was the potential that he may have gotten some gluten accidentally. But the past two times he got sick I can't find anything he ate that would have had gluten in it. Any thoughts what might be going on? Could there be a second food allergy that's causing this? And why would be throw up now when he never did before? Any ideas would be great appreciated. I've scheduled an appointment with a children's GI specialist, but we can't get in until Sept.

[aeryn]

First I want to say thank you for all the great information on this site. I've done a lot of lurking and have learned so much.

My question is in regarding to my 10 year old son. He's complained of stomach aches/cramps for at least two years. We've been told by several doctors is was just stress/nervous stomach. I had him tested for wheat allergies, but not specifically celiac, and he was shown to have no allergies to wheat. Besides the stomach aches he's had crazy mood swings for over a year - giants fits of anger to the point where I've had to physically restrain him to keep him from hurting himself or damaging things.

At the end of August I decided to try having him go gluten free to see if it made any difference. Within 24 hours his stomach ache went away - a miracle really - but even more amazing to me these crazy meltdowns stopped. About three weeks into being gluten free he ate a bowl of mac and cheese (with gluten) within about an hour and a half he threw up and had diarrhea. I thought I had it figured out.

Since going gluten free about 6 weeks ago his stomach has been on the whole better - however (and this is where my question is) about once a week he'll feel really sick again and he throws up and has diarrhea. He rarely threw up before going gluten free, though he had almost constant stomach pains. A few times after he'd gotten sick we realized we'd accidentally gluten him, or there was the potential that he may have gotten some gluten accidentally. But the past two times he got sick I can't find anything he ate that would have had gluten in it. Any thoughts what might be going on? Could there be a second food allergy that's causing this? And why would be throw up now when he never did before? Any ideas would be great appreciated. I've scheduled an appointment with a children's GI specialist, but we can't get in until Sept.

Did he eat any dairy? Lactose intolerance can cause that reaction as well.

[ravenwoodglass]

I do wish you had your ped run the celiac panel at the least before you took him off gluten. Gluten intolerance and celiac are autoimmune related and will not show up in allergy tests. Although some of course do have true allergies to wheat. He needs to go back on gluten for at least 6 weeks to 2 months for any chance of accurate testing. Even then there is a chance of a false negative. However, it does sure sound like he has an issue with gluten, the body knows.

It can be hard to ferret out all the sources that gluten could be getting him. Sharing toasters, wheat in soaps, shampoos and lotions, craft supplies, even pet food can be an issue.

It is also possible to have other intolerances, the most common are soy and dairy. You may want to keep a log of what he eats, and his reactions on a daily basis at least until the doctors appointment. Sometimes gluten reactions are delayed so a log will help you see a pattern. I would not just log the reactions but also his good days. It may help when you see the GI doctor or your ped.

Read as much as you can here and there is also a section for young people that you may want to look over and perhaps have him check out. Ask any questions you need to.

[dotcommom]

Thanks. He loves his milk and cheese, so he definitely had both yesterday. But he has them almost everyday and the vomiting only happens maybe once a week. I did trace back yesterday and found that he had salsa which lists "natural ingredients" so I suppose it could have had wheat in it, but that seems unlikely. He also had pre-shed cheese that listed cellulose as an ingredient which I also did some research on today and found it could be gluten based. So maybe it does all go back to the gluten intolerance and we just need to be more careful. We are starting a food diary to see what he is eating and when he doesn't feel well to see if we can find an obvious issue.

Oh and they were supposed to test him for celiac when they ran the allergy panels and goofed up and it didn't get done. The allergist said it wasn't worth doing the blood work again so they could run the test b/c he didn't believe my son had the symptoms of celiac. I am so mad now that I realize I wasn't crazy for imagining all his issues could be gluten related and I wish that we'd had the test run before going off gluten b/c there's no way I want to feed him gluten again for a month or two. I don't even think he'd agree to eat it because he knows how bad it makes him feel. I don't care if we get an actual diagnosis - if being gluten-free makes him healthy and happy then that's what we'll do. I just wish I could figure out why he's getting sick once a week.

[aeryn]

As someone who is lactose intolerant, I can tell you that just having milk and cheese isn't guaranteed to cause a reaction - it's the amount, the type, and the body's sensitivity level. For me, if I drink milk (in a bowl of cereal or just a glass of it) I have an instant reaction. I can eat a block of cheese and not have any reaction (though that greatly depends on the type of cheese...I typically buy lactose free these days.) Some ice cream will cause an immediate reaction while others are fine. It all comes down to the amount of lactose ingested. My doctor told me that lactose intolerance and celiac go hand in hand, and I've seen in many places on this forum where it has been recommended to avoid dairy products when adjusting to the gluten free diet. I'm not saying his problem is definitely a lactose intolerance...just spreading info

I think the food diary is a good idea. Hopefully you'll be able to determine from that what is causing the issue

[aeryn]

I forgot to mention something else - did he had anything with artificial sweetener in it? I have absolutely no idea if its related to Celiac or not, but I know that I have the same reactions to artificial sweeteners as I do to lactose.

[mushroom]

Dotcommom, it is important to distinguish between lactose in dairy, and casein. The products that are pure lactose are milk, cream, ice cream, frozen yogurt (not a true yogurt). The other dairy products contain lactose to a greater or lesser degree, because they are either cultured like yogurt and sour cream and cheese (the cultures digest the lactose for you), or they have the lactose removed by the churning process as in butter (the buttermlk contains the lactose, the butter the casein, for the most part). So it is perfectly possible for him to get sick with a glass of milk and yet be able to eat a cheddar cheese sandwich (gluten free, of course). The harder the cheese the more likely he could tolerate it. So a grating or two of parmesan would probably be okay for him whereas milk with his cereal might not. But there are so many other milks - rice milk (but NOT Rice Dream), almond milk, hemp milk. I would not personally choose to try him with soy at this point. At any rate, it would be worth testing to see if it is all dairy or just the lactose.

[dotcommom]

Thanks. I didn't realize that you could be lactose intolerant and still tolerate some forms of dairy. Interesting. There are several members of my family that are lactose intolerant, so that's possible. We're starting our food diary today, so I hope to start seeing a pattern.