Gluten Free diet important ?

[5knights3maidens]

Have any of you seen a "negative" reaction to this with your child?? My dd (5) started this and I believe she is getting worse with not concentrating, throwing things, just miserable. It seems to have started as soon as I started the Gluten Free. I'm at my wit's end!

[hsmamainva]

How long have you been on it?

 

I know that many times, children can get worse before they get better.

 

And it can take up to 6 months to remove gluten from a child's system, especially if you're dealing with something on the autism spectrum. And it can take up to a year to see results.

 

So I'd need more information, such as why you've chosen a GF diet. (Meaning, did you have allergy testing done that showed a wheat allergy, or are you trying to help with something like autism?)

 

Btw..I answered your other post on the special needs board and you mentioned ADHD -- if that's the child you're trying to go GF on, you may want to try the Feingold diet. I had wonderful success with my 14yo on the Feingold diet -- the GF diet didn't do anything for him -- BUT .. it didn't hurt him either....if you're seeing a really negative reaction to the GF diet, then I'm thinking it's because it IS working..it's just going to take time.

[5knights3maidens]

Adhd/pdd low spectrum of autism....talks, runs around (to much!) etc..

 

Ok, She has been off calcium for quite a long time...major allergy. She has been taking (for awhile) calcium, magnesium, zinc (she was low), fish oil, b12 1/2 capful Miracle 2000 vitamins, started B-complex 50 a few weeks ago. The doctor wanted her to take Castrol but I thought that was bothering her..so she hasn't taken it. (could it be the B-complex bothering her??)

Her urine test came out with some issues with her B's(I have to get the paper out); that is when she wanted the B12 to 2 chewables a day and added the B-complex....and suggested going on the gf diet. She is behaving terribly. I have been told I'm hated and things thrown at me. She's hitting her little sister alot. She wants to learn so badly but can't concentrate.

[hsmamainva]

It could be the B complex supplement, but I'm not really sure. I really think that, if she wasn't sensitive to gluten, then taking her off of gluten wouldn't do anything, if that makes sense.

 

However, it would be best to not start two new things at the same time because, then, when you have a negative reaction (or a positive one, for that matter), you don't know which thing caused it.

 

So you could stop one or the other for the time being (I would say at least 2-4 weeks) and see what happens, and then, if everything goes back to normal, you'll have your answer -- or at least a possibility of what it could be.

 

But I do know that many times, children crave what they're allergic to, especially when it comes to gluten and autism -- there's a whole "opiates theory" associated with that...that when they eat wheat, it's as if it makes them high and they want more and more and more, to keep the feeling -- the same can happen with dairy. Does your daughter crave things made with wheat? For instance, eat a large number of pancakes, whenever they're served? Are her favorite foods wheat-related (i.e., chicken nuggets, macaroni and cheese, pasta, etc)?

[5knights3maidens]

I'm going crazy!!! Just had to get that out, sorry. :)

Thinking about the cravings...the past couple of days she has been literally inhaling cucumbers and tomatoes from the garden. Today she was getting cucumbers and trying to peel them herself. She ate 3! She hasn't had them "in abundance" for quite a while. I'm going to have to really watch tomorrow. She hasn't had any wheat for about a week and a half and I haven't noticed her going after any type of wheat food.

I do not know anyone around here to talk to about this (feeling kind of alone in this lately)....:)so thank you very much for your time.

[hsmamainva]

Craving cucumbers and tomatoes sends up a red flag for me!

 

I would really encourage you to research the Feingold diet. Cucumbers and tomatoes are two of the foods that are removed with Feingold.

 

Here's a link to get you started -- you can find plenty more on google! :)

 

http://www.everydiet.org/diet/feingold-diet

[5knights3maidens]

I should have said craving the cucumbers "again". She did awhile back and I should have known better.

Getting up at 3 a.m. didn't help me today. :)

I've been sitting here thinking, and thinking, worrying, etc.

I think I'm a little stressed.

Thanks again for your time.

[Carrie12345]

Disclaimer: I have no first had experience with a GF diet. My aunt has celiac disease and we've considered CF/GF for my spectrum son, but we've never actually gone through it at home.

 

That said, what has she replaced gluten foods with? Carbs play a big role in energy. What is fueling her body now?

[5knights3maidens]

Ok, you're making me think. She is eating alot of gluten free pancakes and I did buy the bread which is already gone. She eats fruit; not apples. She eats alot of chicken, and sometimes hamburger. Gluten free potato chips, cookies (sometimes cake) I make that are gluten free. Sometimes corn, green beans, peas. Some days she doesn't want to eat.

[Stacie]

I've had my son on the GFCF diet for 8 months. The change has been very drastic but, like others mentioned, it does get worse before it gets better. The degree of her dependence on gluten will dictate the extent of her withdrawl symptoms. I was told that the greater the initial reaction the better will be the final result. In other words, if she's extremely dependent on these proteins she will react strongly (similar to my reaction if coffee were removed from my diet) and once they're out of her system the outcome will be more noticable.

 

Have you also gone casein free? Casein and gluten have a very similar molecular structure and if she's sensitive to one she's likely sensitive to the other. Casein leaves the system rather quickly so if there is any reaction, it will likely be fast and/or dramatic. Gluten leaves more slowly, peaking at around three months and diminishing thereafter. The fact that she's reacting so strongly can mean so many different things...she's highly sensitive, she's got other things working, or even that removing gluten is bringing out additional food reactions previously masked by the gluten.

 

I can give you a brief path of what we encountered if you're still reading! I removed yeast products and sugar for three weeks first, then removed casein for two weeks, finally ending with removing gluten. Each time I took something away we went through torture with the behavior. Each time that valley passed the peak was even higher. The largest valley-peak combo came from a one month presecription of Difflucan. That was our final step and it was by far the most dramatic, indicating to me we were dealing with a huge yeast problem on top of the PDD. I also added in nutritional supplements on a rigid schedule so I could determine any adverse reations to them.

 

I know this has gotten long, but I have two books to recommend if you haven't read them. One is by Kenneth Bock and is about the 4 A's. I forget the exact name, but it is very good. Another is by Karen Seroussi and is called Unraveling the Mystery of Autism. Your library may have both. I read them with much skepticism knowing that someone would not write a book if it didn't work for them, but that since everyone is not writing books it must not be working well across the board. I can now say I'm fully convinced of the dramatic results mentioned in some cases because we are most certainly in that group.

 

I can give you some more info if you'd like. Good luck with your changes and please let me know how it's going!

[susie in tx]

Die off can cause the reactions that you write about. I know that when I went off gluten this last time, I was in a really bad mood - angry, etc. I think that gluten can cause these types of reactions. It took a couple of weeks and I'm finally feeling a little better.

[Dani n Monies Mom]

I hesitate to step in here though our dd is 13 and we've been doing the diet for 10 years. So much has changed that I no longer know what the latest therapies are or anything like that. So I'll just speak from our experience with dd.

 

We began the diet when she was 3. At the time we felt it would be best to go 'cold turkey' because she was still young and could adapt quickly. Her favorite foods prior to the diet were cherrios and goldfish. She would eat them obssessivley. We had really dramatic results, and we learned a few things in that first year or two that may be helpful, though it may already be obvious.

 

First was the cross contamination issue. DD was in a toddler program at the local p.s. They did an awesome job, but what we discovered is that dd was so gluten sensitive that if they used the same plastic knife to cut up her food as everyone elses, those crumbs on the knife were enough to cause a reaction. A crumb that falls on her plate at home would be enough to mess her up for weeks. So you have to be really diligent and careful. The good news for us is that ten years later she no longer reacts so sensitively. In fact, she got a whole gluten pancake a few weeks back (mixed it up with her dsis') and we just knew life as we know it was over, but she barely reacted at all.:D

 

The second thing is that you have to not only change the food, you have to change your soap, shampoo, laundry detergent, lotion, toothpaste, dish detergent, anything and everything that has any contact with the skin. If it gets on thier skin, they can absorb it into their bloodstream. I found this out the hard way. Every time I washed dd's hair, she seemed to 'revert' for a few days. It would get really bad, and we would be searching to find where the food contamination occured. It took us a little while to figure it out. It was shortly after that that I read about the elimination of all those peripheral items.

 

Only just 2 years ago I discovered that dd also has a sensitiviy to dark raisons, which I belive is on the Feingold list. She would eat them to the exclusivity of other foods. We discovered this allergy by accident. We were out of raisons and couldn't buy any for several weeks. Those weeks showed a calmer, more focused child. So I into'd the raisons back into her diet, and her behaviors were almost immediately affected. I haven't had the energy to do the Feingold and the gfcf together, but it is something I need to pursue further. But dd is so small for her age, 64lbs and 4,8" at 13yo that I hesitate to add more restrictions to her diet.

 

HTH,

Ava

[5knights3maidens]

Where in the world do you find all the gluten free soaps, etc??

 

editing to say,after searching: Oh, I already buy her the Tom's toothpaste, use the Eco Brand Laundry detergent. Now I have to find other items especially play doh. I've found some for over 22.00 for 5 1/2 lbs. WOW!! just for play-doh!

Thank you!!

[Dani n Monies Mom]

Where in the world do you find all the gluten free soaps, etc??

 

editing to say,after searching: Oh, I already buy her the Tom's toothpaste, use the Eco Brand Laundry detergent. Now I have to find other items especially play doh. I've found some for over 22.00 for 5 1/2 lbs. WOW!! just for play-doh!

Thank you!!

 

Or just buy natural clay, or use serving gloves, you know the ones that cafeteria workers use, whenever you break out the play-doh. They did that at school a lot.

 

I once got the book from gfcfdiet.com and it helped a lot in getting started. Dove soap is good as well as Dial, I can't think of the others off the top of my head. It also lists some common-over-the-counter meds that are gfcf.

 

Ava

[bettyandbob]

We are gf due to celiac disease, however one of my dc has other issues (ADD, SPD, other stuff with letters). Things get worse before better. It can take 4 to 6 months for gluten to clear the system. Based on the cucumber craving, I strongly suggest looking at the feingold diet.

 

You need to fill your pantry with all the stuff your dd CAN eat. I also strongly suggest planning your meals so that dd is not eating different food.

 

My family went on the gf diet and found symptoms we didn't expect were related go away. I hear this all the time from other families. dh's cousin put me on feingold. She put her family on it for the behavior of one her 6 dc. After a month another child noted her stomaches went away--dh's cousin didn't even know about the stomaches to begin with.

 

Good luck. You will get through this. You will.

[Storm Bay]

BTDT!!!!! Let me say that we tried it all--gf/cf, Feingold, the specific carbohydrate diet. You name it. But, it turned out we were shooting blanks in the dark without a gun. We finally went to a wholistic MD, had a battery of tests done, ruled out many things and came up with multiple food sensitivities from the ELISA test.

 

Yes, we did need to stay gf/cf. But Feingold never actually tested the foods, and the MD gave us a much more accurate list of foods to avoid if that were necessary. However, it turned out dd isn't sensitive to that. We went on a rotary diet, and she did get worse first. However, she didn't really improve until she decided not to cheat and stayed true to the diet. She would get physical pain from gluten, dairy, artificial colours & flavours, plus behavioural and other issues.

 

She is much, much better now and can eat what she wants to when we travel. At home I try to stick to the old rotary diet to help avoid redeveloping problems.

 

If there is any autism or things like that, I recommend a DAN! MD. It turns out ours was mostly food sensitivities, and not the original diagnosis. I know another girl diagnosed with severe autism at 3 who merely had an immune problem (not always the case with autism), was put on anti fungals and anti viral meds and you'd never know she was ever diagnosed with autism.

 

All this said, not all problems are this easily solved, and my dd is still a challenging child (she is 13, after all), but not on any spectrums.

[susie in tx]

Model magic and sculpey are both gluten free.

 

We were gf and df for a long time. Then, I got pregnancy, my dh was deployed to Afghanistan and I had an 18 mo that just would. not. stop. screaming. I thought it was just her, for a long time.

 

So, I had the three girls IGG tested for foods. Oh boy.

 

My eldest was allergic to the least. My youngest was allergic to the most. She was the one who screamed all the time.

 

They were not all allergic to the same foods, but they were allergic to many of the same food families. FI, one was allergic to lentils while another was allergic to navy beans. Then, there were nuts. I had no clue about the nuts. Or the beans, really. Corn was on the list, as was dairy. Eggs, potatoes, all citrus, garlic, onions.

 

I eliminated everything and my 18 mo stopped much of the screaming. She's still an intense kid. My midwife still remarks on how she watched her go from a kid who just could not deal to a child who could manage her emotions on occasion. Now, she was young, so she did need some help. But there were times before we took out the allergens in which I just didn't know how to help her.

 

During our time when we were eliminating allergens, it was hard. Everybody was off of everyone else's allergens so I didn't have to keep it straight. I added in b vites and a multi and lots of fish oil so that the girls and I still received good nutrition. My youngest did not like vitamins, so I had to get creative with giving them to her.

 

There were days when I wondered if it was worth it all. They did not always react well to the elimination of the allergens. It was like they were jonesing for those foods that they couldn't have anymore. To the OP: I imagine that is what your child is doing. Gluten, soy and dairy have very similar properties and if you find your dd gravitating toward those things, she may be trying to substitute one "high" for another. In fact, that may be why she is wanting to eat so many gluten-free bread subs. She's looking for something she used to get from the gluten.

 

We're several years down the pike from that time in our lives. The 18 mo is now 7. She can eat oranges, potatoes and eggs. She still cannot eat bananas. She's an intense kid, but nothing like what she was. If she doesn't eat enough or often enough, low blood sugar can be a problem and she starts in on old behaviors.

 

But, it's really a ton better now. I'm glad we did it. And I would go back to doing it again, if I had to. Though I really don't want to. LOL