Can Kids Go Nuts When Gluten Removed?

[Mia H]

I have been struggling with my 4 1/2 year olds rashes for over 2 years. I finally found out that I am gluten and casein intolerant so I decided to take her off. She broke out from Kinnikinick (I also have a tapioca problem) so I thought maybe its the tapioca. So since Thursday (only 3 days now) she has been off and she has had tantrum after tantrum and does not care what she loses. (She even missed a friends birthday party yesterday and didn't seem to care!).

If it is withdrawal how long will this last? uuuuuuuuug

Mia

[CarlaB]

Don't know ... I seemed to feel like throwing tantrums when I got off gluten and casein!! Since it acts like a drug in your system, it sure seems like getting off a drug. Hang in there!

[Daxin]

I have read in other threads here, and experienced this myself.

Some of us do go through "withdrawl" syptoms when we went off gluten. This is due to the antibodies to the gliading etc being elevated. When your body is used to being on high alert for so long, it takes a while to reset itself, and can feel/act/appear exactly like withdrawl.

You and your children are not alone.

[Mia H]

I haven't had her tested yet, its so expensive to do Enterolab on your own. My husband has enough symptoms that he is going to get a blood test at the Dr next week. If that's negative (cuz he's been off gluten a couple weeks now and low gluten quite a while) we will test him at Enterolab, then next month our first child, then our youngest.

But the rashes are soo bad I can't wait for the test! I wanted to try diet change.

THanks for the replies.

Mia

[Nantzie]

You can order individual tests at Enterolab too. I wasn't able to afford ordering everything all at once either. For me, my symptoms were so strong, and my response to just not eating gluten for a day or two was so dramatic that all I did was the genetic test ($150) just to make sure I was barking up the right tree and even was genetically capable of having it. My kids at the time didn't have symptoms, so I did genetic tests for them; my daughter a month later, and my son a few months after that. Then my daughter started showing symptoms a couple months ago so I got the gluten sensitivity stool test for her ($99 +$20 for shipping and handling - the stool sample has to be flown back next day air...) . And I just got the stool test kit for my son.

Nancy

[mommida]

You can find articles here at celiac.com that show gluten and casein have an opiate effect. (That is opium like heroin and) So if this is an individual that has been having this affect you are making them break an addiction. Withdrawal symptoms were very highly connected to children introduced to the gluten-free cf diet as a treatment for autism.

L.

[Mia H]

Well I will keep going than with her gluten-free/cf/tapioca & soy free diet and hope she calms down.

The thing about autism is interesting because she has had some interesting symptoms. When she was young I almost thought she has sensory integration disorder, couldn't stand sox, tags bugged her, certain food textures bug her. And she has STRONG reactions to everything like it's the end of the world. I was freaked out, I have never even met a kid like her before. She is a spirited child to say the least.

Anyone have a guess as to how long I should keep her on the diet? a month? I am hoping she will calm down in a week or so. She is harder than usual and that is saying something!

It's hard because everywhere we go people offer kids gold fish and pb & j sandwiches and milk.

Mia

[eleep]

My acute withdrawal symptoms lasted about a month or so. If you're serious about seeing how this works, I'd give it a good 4-5 months. I feel for your child as I had quite a few tantrums myself after going gluten-free -- upsetting, because I thought this was something that would instantly "fix" everything -- I wasn't prepared for the withdrawal and it nearly led me to believe that I was mistaken about the celiac and was actually going off the deep end (that's when I finally shelled out for the Enterolab testing).

Although I have progressively been feeling better, there have been a lot of ups and downs: I think the milder withdrawal effects actually went on for 2-3 months because it took an extra two months of that to finally be sure I had _all_ the sources of gluten eliminated from toiletries, vitamins and stuff like that. I also stalled on eliminating dairy because I didn't test for casein intolerance and I was in denial about how much lactose was still affecting my system.

eleep

[Byte Me]

When she was young I almost thought she has sensory integration disorder, couldn't stand sox, tags bugged her, certain food textures bug her. And she has STRONG reactions to everything like it's the end of the world. I was freaked out, I have never even met a kid like her before. She is a spirited child to say the least.

Hi Mia!

My youngest daughter is VERY much like the way you describe your daughter! She is 12 years old now. She isn't quite as bad about things bugging her now as when she was little, but sometimes she still jumps up all of a sudden, says she can't stand to wear (fill in the blank here, lol) anymore, and changes clothes. Food textures, same thing here also. And talk about dramatic, LOL. That did get better for several years, but once puberty hit, it is back with a vengeance! Any little minor upsetting thing is a tragedy.

I have finally convinced all 3 of my kids, and even my mom to go gluten-free; I'll be interested to see if they experience any withdrawal-like symptoms. I'll keep you posted if they do.

Good luck, and I hope things get easier for you and your daughter soon

~ Jenn

[mommida]

I think the earliest you would be able to tell if the gluten-free diet is helping would be four to 5 months.

The best thing to do with kids is carry all the safe treats with you. All these offers of treats (sometimes for a reward for great behaviour) can be traded for the safe ones, and the diet doesn't seem like punishment.

L.

[cmzirkelbach]

Well I will keep going than with her gluten-free/cf/tapioca & soy free diet and hope she calms down.

The thing about autism is interesting because she has had some interesting symptoms. When she was young I almost thought she has sensory integration disorder, couldn't stand sox, tags bugged her, certain food textures bug her. And she has STRONG reactions to everything like it's the end of the world. I was freaked out, I have never even met a kid like her before. She is a spirited child to say the least.

Anyone have a guess as to how long I should keep her on the diet? a month? I am hoping she will calm down in a week or so. She is harder than usual and that is saying something!

It's hard because everywhere we go people offer kids gold fish and pb & j sandwiches and milk.

Mia

I just finished reading a book from the child's perspective on starting the gluten-free/CF diet. His name is Luke Jackson and his family started three children on the diet at once. I bought if off amazon .com, but the library may have it. It may be worth a read, to help you stick thru it. I have heard two weeks to several months before the benefits of the diet kick in, and they vary per child.

My son is Aspergers and diabetic, with one positive marker for celiac, (there is a correlation between diabetes and celiac). He is a much calmer child now, with fewer 'end of the world' moments. Homework used to take 1 hour of screaming, and 10 minutes to do it. By the end of last school year, the complaining reduced significantly. In fact, he has a fourth grade project due the first day of school, and he finished the reading portion and the first part of the writing already.

[Mia H]

I just finished reading a book from the child's perspective on starting the gluten-free/CF diet. His name is Luke Jackson and his family started three children on the diet at once. I bought if off amazon .com, but the library may have it. It may be worth a read, to help you stick thru it. I have heard two weeks to several months before the benefits of the diet kick in, and they vary per child.

My son is Aspergers and diabetic, with one positive marker for celiac, (there is a correlation between diabetes and celiac). He is a much calmer child now, with fewer 'end of the world' moments. Homework used to take 1 hour of screaming, and 10 minutes to do it. By the end of last school year, the complaining reduced significantly. In fact, he has a fourth grade project due the first day of school, and he finished the reading portion and the first part of the writing already.

What is the book called? That is reasuring news as to how the diet has helped in your family. That is great.

I hope we get similar results.

Mia

[cmzirkelbach]

The book is called "A User Guide to the gluten-free/CF Diet for Austism, Asperger Syndrome and ADHD"

The author is Luke Jackson. It is a quick read and pretty frank, with out being overly graphic.

Note: some of his info about gluten-free and celiac are wrong, but he clearly is not writing as an expert on celiac disease, only the changes the gluten-free/CF diet made for him and his brothers as autistics and asperger children.

There are several people in the local SEPTA (Special Ed PTA) group that I attend that also swear by the gluten-free/CF diet.

For some kids, it is very rough in the beginning, because it is like going through withdrawal, but the overall improvements are worth it.

[Jodele]

My oldest dd is having impulse problems and being hyper. She is also crying more. We have gone gluten-free for 3 days now. Is this going to get worse? First day of school is tomorrow. She is a Straight A student and I hope this does not harm her in learning.

Jodele

[cmzirkelbach]

Everyone is different, but the general trend is the first days are the hardest. She is going gluten-free because of gluten intolerance/celiac, not autism/ADS?

[mamatide]

So since Thursday (only 3 days now) she has been off and she has had tantrum after tantrum and does not care what she loses.

If it is withdrawal how long will this last? uuuuuuuuug

Mia

Hi Mia,

Sorry you're going through this... just wanted to share that my DD most defintely got worse than ever in the first week of gluten-free (and if it were me I'd leave the tapioca in her diet until you give gluten-free a little longer) - she was rolling around on the floor wailing in pain from her bloated belly. She was NASTY (and I mean nasty). Very very negative. Angry. She was worse than I'd ever seen her.

And then around 12-14 days, her poop turned dark and normal, and the very next morning she announced to me that the pain was gone. Completely gone. The day after that she started singing in the morning (something she did when she was an infant and that we hadn't even noticed she'd stopped doing -- until she started doing it again). She had a ton of energy (and she'd been energetic when she was on Gluten! She was veritably bouncing off the walls. She was happy and her entire body turned pink (after being so pale we could see all of her veins).

So my words of wisdom - stay the course. It will definitely get worse before it gets better but you need to be absolutely sure that it's all out of her system - fry pans, shampoo, conditioner, YOUR hand cream (which gets into everyone's food when you prepare it)...

Chin up and best wishes.

mamatide.