RAST is normal... What now?

[echoecho1528]

DD's RAST came back normal on all allergens. I KNOW my daughter is reacting to wheat and am pretty sure there are others, but I haven't had any luck with an ED - not detailed enough or too impatient, I'm not sure. Well, I don't know where to go from here. Her pediatrician wants me to re-intro wheat into our diets. I think he thinks I am making up her symptoms. I have intro'd wheat 3 times each time resulting in a roaring cold, rashes at the inside of her joints, waking up screaming at night and explosive gas. I don't know what to do now. She does not sleep. She is 13 months old and still waking up every 1-2 hours, teething or not. Anyone have any suggestions or any experience with this? I don't know what to do next...

[kjbrown92]

The elimination diet is the gold standard, along with extensive food journaling. It's hard but rewarding when you finally connect the dots.

Dairy is THE biggest intolerance, gluten is second, then soy, then corn, then eggs. How about just taking those 5 and see where it gets you? That means you/she can eat everything my DS is eating (and more since he's got more than that he's avoiding).

Or go in order. You already know gluten (or at least wheat) is bad. So take out dairy too for a week. If no change, take out soy as well for a week. If no change, take out corn for a week, etc. Give each one a week. But don't add anything back in until you get to baseline. It took me about 3 months to figure out all of my DD2's food triggers, but oh that full night of sleep the first time was sooooooo worth it.

[Chinese Pistache]

I'd probably look for a different ped, too. If he's going to ignore what you, the mother, are seeing and feeling, he's not worth it.

[echoecho1528]

Originally Posted by kjbrown92

The elimination diet is the gold standard, along with extensive food journaling. It's hard but rewarding when you finally connect the dots.

Dairy is THE biggest intolerance, gluten is second, then soy, then corn, then eggs. How about just taking those 5 and see where it gets you? That means you/she can eat everything my DS is eating (and more since he's got more than that he's avoiding).

Or go in order. You already know gluten (or at least wheat) is bad. So take out dairy too for a week. If no change, take out soy as well for a week. If no change, take out corn for a week, etc. Give each one a week. But don't add anything back in until you get to baseline. It took me about 3 months to figure out all of my DD2's food triggers, but oh that full night of sleep the first time was sooooooo worth it.

Thank you Kathy. I did a TED previously and couldn't tell if anything was different . But, she DID have a cold (from my eating wheat). Her sleep is really the only symptom that is still present when wheat is out of the picture. Couldn't her sleep problems be due to something else or should it be expected that she sleep longer by now?

[kjbrown92]

The sleeping horribly at 13 months is what led me down the slippery slope with my DD2. When I removed all the foods, she slept wonderfully, straight through. Is she waking up and easily put back down? Does she wimper and cry? Is she drinking every time she wakes up? Usually they drink more because they're trying to soothe their stomach even though what they're drinking is causing the problems. Both my kids were like that, drinking a ton at night.

[echoecho1528]

She wakes up and is usually easily put back down, unless she is teething. And, yes, she drinks a ton at night. She does this thing where she sucks in and pushes out her tummy a bunch of times after I put her back down. I thought she drinks a lot because she does not eat any solids yet. She refuses to eat anything except maybe a bite or two here and there. Perhaps everything she eats hurts her stomach? She is tiny... just about 18lbs at 13 months, and of course that worries me too.

[chlobo]

Originally Posted by echoecho1528

She wakes up and is usually easily put back down, unless she is teething. And, yes, she drinks a ton at night. She does this thing where she sucks in and pushes out her tummy a bunch of times after I put her back down. I thought she drinks a lot because she does not eat any solids yet. She refuses to eat anything except maybe a bite or two here and there. Perhaps everything she eats hurts her stomach? She is tiny... just about 18lbs at 13 months, and of course that worries me too.

wow, this story is just sounding too eerily familiar for me and other moms here. I also didn't have good luck on the TED and I did it for months. But I am right there with you except DS is 19 months. Also small.

I wish I had a magic bullet but I don't. Right now we are gluten, dairy & egg free. I'm considering corn & soy but it would mean I'd have to stop all my supplements & I have adrenal fatigue so I'm not sure I want to do that. But until I can get DS to eat more I have no choice.

Wish I had more to offer. Just hugs.

[flightgoddess]

If you know wheat is a big deal, and RAST is negative... have you asked for a celiac blood panel yet? you will have to google it, I don't remember all the names and my spelling is atrocious: there is a genetic panel, IgG, IgA tissue transglutamase, antiendomysial something like that.

Bring that up at your next visit, but don't expect them to know much, don't let them dismiss your worries and say 'it's so rare' because really, celiac disease is not that rare.

[echoecho1528]

The doc and I have talked about Celiacs before. But, don't you have to be ingesting quite a bit of gluten before the test? This is why I haven't done it yet. Every time she has wheat she has a reaction, and at this point I can't imagine giving her a ton of it for the test.
I'm having a hard time wrapping my head around this. There are so many "what if's" that I am concerned about. Because the only symptom she has is her horrible sleep habits, what if it is just that... bad habits? I guess I am just really hoping that we don't go down the "slippery slope," as Kathy called it. But then again, the last thing I want to do is ignore it. I guess I am just very overwhelmed with having a sleepless baby who is pretty much all around high-needs. I am scared of what I might find if I try to determine she has more in tolerances than wheat. I also fear not doing it right. I know that I know my daughter, but I'm afraid I might miss something or misinterpret it. I have very little confidence in my abilities to find out what is wrong with her. The responsibility of being a parent is really hard for me. Ugh...

[kjbrown92]

I didn't have confidence in myself when I was starting out but I'd lost confidence from the doctors telling me everything was normal (eczema, occasional diarrhea, waking up 12-14 times a night). I had a "normal" first child, so I had something to compare to. We did an elimination diet and I had my whole packet of pages of food journals when I went to the pediatric GI because everyone said "you can't do this on your own." The doctor looked at the food journal and at her diet at the time and said it was fine, I didn't need her, and to test foods again in 6 months. THAT gave me confidence. I introduced healing measures like bone broth, probiotics, fermented foods and things like coconut oil, and we've been gradually adding back in foods. I am hopeful that there won't be any long term effects from this, and she'll be a healthy girl, and a healthy eater (because she's not used to all the processed food). I could have kept feeding her things, and the reactions could have kept getting worse (as corn went from eczema to folliculitis type symptoms) because that's what I think happens, the symptoms just keep changing and you wonder why your kid seems to catch everything, and maybe that's more the slippery slope than pulling out more and more foods to get your body ready to heal. Gotta get the kids on the bus, so I'll get off my stump!