Help-retruning Poster...loosing It!

[kimber]

Hi everyone

I could use any advice/support as I feel like my world is crumbling...

My ds will be 3 in October...he was diagnosed with reflux at 2 weeks and has been on reflux meds since then (now PPI-prevacid)

He's also on 3 different allergy meds and mirilax (tried him OFF mirilax a few weeks ago and he didn't go for 4 days)

2 skin tests and a recent RAST were all negative

Recently I kept a diary and Zach reacted to corn, popped corn, and grapes

He can be the sweetest child one day, then a TERROR the next

His episode consists of major major tantrums, constant crying, gas...pale skin, DARK circles....agrressive/angry behavior

He had b/w ordered by his GI and stool test and all were negative

I feel like I'm loosing it...I just want a normal life and to figure out what's wrong...

I can deal with whatever special diet he needs...but I don't know what that is?

I tried him on a gluten-free diet and he did really well...more energy etc, then he started having episodes again...

He is already dairy/soy free, and I'm starting to wonder what he can eat?

It has been a while since he has been gluten-free free (only gets a small amount of regular pasta on occasion..no cookies/snacks)

yesterday I made Whole wheat pasta and today he is VERY VERY lethargic, sad, pale, etc...it breaks my heart!

I really don't know what to do anymore??

We see a new GI in 1 mnth and I don't want to put him through unecessary testing and won't result in any answers

Kim

[mommida]

BUMP

If you want to start a gluten free diet and need information, PM nini for her newbie pack of information.

Any gluten gestation is not acceptable.

Check some of the posts from those who have problems with grapes.

We have people here who also are corn free.

L.

[AndreaB]

Definately get him totally gluten free with no cheating and be very careful about cross contamination. Check his meds to see if they have any gluten ingredients in them, as well as if they have any soy or dairy ingredients. Also check personal care products. If you can get all the gluten, soy and dairy removed then you can better tell what you are dealing with. It sounds like gluten is causing problems from what you wrote. Also, if he is allergic to soy you may want to watch out for peanut butter. Those two are from the same family. You could always switch to almond butter which will give you a little calcium too. Corn causes some people problems and from things I've read are best left alone or in small quantities if you can handle it. How does he do with rice or millet?

Please keep us updated on how he is doing and feel free to come here as often as you need to to talk.

[evie]

Kim

[kimber]

Thanks everyone for your support

Zach's gluten.dairy/soy free cereals are corn based

It's so hard to think about getting him gluten, corn, dairy and soy free

I'm sifting through recipes and different options

Thanks again, Kim

Kim

It sounds like you have your hands full Kim. Feel free to come on here and vent, ask for help or whatever helps you!! We are all here for help. Many here ha e been thru amny years of finding help but from my reading it seems children get diagnosed faster than mnay adults have. I understand the average for adults is 11 years, mine was more like 25 so I am glad I finally found the right Dr's a few months ago or I would have been down the drain I was losing weight so fast!! there has been alot of resaerch lately, I read recently that now autistic children are often found to be celiac and going on gluten free diet helps them a lot.

It seemed for myself it took nearly 3 months to start feeling even a bit better, could it be that your son was not on the gluten free diet long enough to be helped much or he ate some gluten food you were not aware of?

Sometimes grammas and etc feel sorry for a child & think they are deprived. hope I have been a bit of help. Prayers for you to help with the problems.. evie