RyMas

New Member
Has anyone tried gluten free diets for ODD. My son is up to 3/4 Lexapro a day and 1/4 ativan 3 times a day. We see the MD for medication check up and the counselor for anger management. Things have seemed to get worse though. He cannot control his anger. If we do not give him what he wants he throws a temper tantrum and trying to talk him down as the counselor explained is not helping. When he is in a rage there is no stopping him. It can last for an hour or more. He started kicking,hitting us and throwing things. We are afraid of him. He is only 8 but is a big boy.

Our paper did a story on gluten diets and thought I might try it. My son's diet consists mainly of white bread, pasta and ceral. He is obsessed with food small Obsessive Compulsive Disorder (OCD) per MD.

Any suggestions would be helpful!! I am at my wits end, ready to send him to grandparents!!!
 

TiredSoul

Warrior Mom since 2007
This sounds EXACTLY like my son. How does he do in school? Does he have an IEP? I have also wondered about the gluten free diet - so I hope you will get some replies from people who know more about it.

Good luck!
 

smallworld

Moderator
Some on this board have tried different diets with good success. I hope they will come around soon to share their experiences.

I do want to caution you that if your son has bipolar disorder, both Lexapro and Ativan could be activating him and making his anger and aggression worse. If you are not seeing a board-certified child psychiatrist, I suggest you locate one and make an appointment ASAP. If you are already seeing a psychiatrist, I strongly recommend a second-opinion evaluation.
 

amazeofgrace

A maze of Grace - that about sums it up
I was thinking the same thing about the medications, if he is BiPolar (BP) they're only making him worse. I tried a gluten free diet and a dairy free diet with difficult child II, it was not easy and it did not seem to help, because it was an irritant to him to not be able to eat what he wanted, he also is OC about eating. I basically avoid sugar, caffeine and food colorings now.
 

Josie

Active Member
My daughter, now 12, has been on the gluten free and casein free diet for 2 years now. As long as she is on that diet, she is a easy child. Her diagnosis was ODD and depression. The ODD was the main problem and the depression was just what we thought might be causing the ODD. It turns out it was her diet.

She was taking 20 mg of Lexapro and still violent and defiant. We were thinking we would have to add Seroquel. Before we did that, we tried the diet and now she is on no medications and not even going to therapy any more.

For us, the gluten free and casein free diet is a miracle. I will warn you that the slightest error, like eating something that says it may contain traces of wheat, will bring back the old problems. So if you try it, it is important to eliminate every bit of it before deciding it won't work. My symptoms last for 2 weeks if I make a mistake.

I would start with just the gluten free diet and then see if you need to do milk, too. My daughter was much improved just from eliminating gluten but we saw that milk was a problem, too. She is irritable and defiant when she has gluten and mean and aggressive when she has milk.

Good luck if you try it.
 

tryinghard

New Member
Where can I find information on how to put together daily meals and snacks if you go gluten free? My son is a type one diabetic so each meal he must have a certain amount of carbs. I searched the internet but am having issues figuring out how to but together meals for an entire day.
 

Marguerite

Active Member
A few years ago difficult child 3 was part of a study into diet and autism - they were looking at whether modifying his diet could bring about improvements in various issues such as anxiety, nausea, behaviour problems, mood problems etc. According to the work they'd done, I think they said about 40% improved in various ways when on the diet. For us, it was too difficult to test properly because there were too many variables, including environment. But we didn't find anything really amazingly startling.

But that was for us - there were others who found a lot of improvement. it really was a matter of testing and seeing, for each individual child.

A few cautions here - first, this wasn't specifically for "ODD" although reading between the lines there would have been kids who could qualify as ODD, who would have found improvement. And not just in anger management, but in any of a large number of symptoms.
The study wasn't looking at bipolar or any other disorder, but I can't see why there couldn't be any possible connection with bipolar, if there is for autism. We DO know that for a lot of difficult children, it takes a lot less change, a lot less 'feeling unwell', to really throw them off.
This was a LEGIT scientific study. By this I mean that to be part of the study you should not be charged a fee. Of course we had to buy difficult child 3's food according to their guidelines, but there was nothing we couldn't get commercially. They also gave us some capsules containing "challenge ingredients" to try as part of the study - we actually didn't get that far, unfortunately. But these challenge capsules were to be used the same way - keep him on the diet until he's been stable for several weeks then give him a capsule to take. They had them numbered and gave us a sequence in which they were to be tested. The capsules were double-blinded, which means that we didn't know what was in each one, and neither did the researchers. The only ones who would know were some technicians in a lab somewhere who had the information locked in a computer and unavailable to the researchers or doctors involved until after each person's study had been completed. Each individual box of capsules was individually put together, so difficult child 3's box of capsules were numbered randomly, not necessarily corresponding in any way to any other patient's.

Now for some BIG cautions - if you're going to try this, you have to really do it properly. I'm (allegedly) intelligent and educated specifically in physiology, chemistry etc. I expected I would be able to pick this up really quickly, not make a lot of the mistakes most people make, and be able to manage it easily. But frankly, I was just as much in need of professional guidance as anyone else. When you begin something like this it's like going back to school and starting over from the beginning, learning entirely new stuff all in a very short time.
In other words, you might think you could do this easily, how hard can it be? But in fact, it's very involved and complex.

What we had to do, in a nutshell - first we had to eliminate any possible causative agents from difficult child 3's diet. He had to be free of these things for several weeks before we could try reintroducing various food groups to see if there was any change. We had to reintroduce groups one at a time, so we could immediately identify which was the problem. Any reaction - back on the diet for more weeks, until his system was cleared again, then trying ANOTHER group.

To do this right, we had to record everything he ate or drank. This includes medicines and even stuff like mouthwash and toothpaste. We were given booklets with the food groups explained. Brand names, ingredient numbers, safe alternatives were given.

To truly eliminate all likely problem foods requires a very extreme diet. You could think you only need to eliminate gluten, for example, only to find out much later that the child reacts to both gluten and amines - in which case, eliminating one but not the other results in no observed change.

To find out more, see if you can Google information on the hospital or the researchers.
The hospital is Royal Prince Alfred Hospital (RPAH) in Sydney - it's a teaching hospital attached to Sydney University. The researchers - Dr Rob Loblay, Dr Velencia Soutter (both pediatric immunologists), Ms Anne Swain (dietician specialising in food sensitivity diets) and others. They are the main ones to look for.

This research was Australia-based which means a lot of their food information was specific to manufactured foods on the Australian market. You could have the same brand of biscuit, for example, in the US market but it could well have different ingredients. As a result, you would need to find a dietician who could help you with information specific to your locality; or failing that, be able to find out absolutely everything yourself (a huge task).

It's not just a matter of eliminating all processed foods, or all gluten-containing foods. "Eat a healthy, natural diet and you'll be on the right track" - sorry, nowhere near enough.

The various food groups they tested for (and I'm working from memory here, plus they'll have refined their work even more since we were involved, so this list is not guaranteed to be complete):

1) Salicylates. These can occur naturally in a lot of healthy natural food, as well as in additives. A lot of herbs and spices have high salicylate levels. Basically, anything with flavour.

2) Amines. Also associated with flavour, but this is a different group. Foods high in amines include chocolate, honey, bananas. There is a lot more.

3) Gluten. It's the sticky stuff that holds a lot of foods together, such as bread. If you bake with a low gluten flour, it won't rise well because bread needs the gluten to hold onto the carbon dioxide bubbles.

4) Wheat. Someone can be allergic or sensitive to gluten but still be able to eat spelt flour, for example (spelt is a primitive strain of wheat which was used in the Middle Ages, before selective breeding produced high gluten grain). Or someone can be so sensitive to wheat that even eating a single caramel (which somehow contains a trace of wheat protein) can trigger nasty symptoms.

5) Milk protein. This can be complicated. You could have a problem with just cow's milk, or any animal-produced milk. Or lactose. And for some people switching to soy milk can also be a disaster.

6) Soy. Thought I'd better include it here. It's a surprisingly common allergen.

7) Artificial additives. Colours, flavours and preservatives. You can be sensitive to just one, or a lot. Or all of them. But chemically they vary widely. Some things are labelled as "artificial additives" when they are from a natural source. For example, caramel is used as an artificial colour sometimes, even though it's made form sugar being heated.

There are more but it's all I can think of right now.

The diet needed to ensure you have eliminated ALL possible causes of sensitivity reaction or allergic reaction is extreme. If your child is non-compliant then it's almost impossible to do this. difficult child 3 was highly compliant but even though he would read labels carefully and check the lists regularly, he still sometimes made mistakes, and then we would have to begin our two week countdown all over again.

It's not a healthy diet, either. To begin with difficult child 3 was restricted to peeled potato which he could eat mashed (salt but no butter), in pieces, steamed, or dry-roasted (no oil). He could have steamed white rice (salt, no butter). One variety of pear was permitted, peeled. He could have chicken (no skin) provided it was roasted with no seasoning other than salt. This meant checking manufacture, because some chicken is prepared with flavour shots during processing. Therefore some brands had to be avoided. He could have lamb (again, no seasoning other than salt). For sweet things - he could have anything made with sucrose but no added flavour. So he could have home-made caramels and toffee, providing they contained nothing but sugar. Home-made honeycomb made by adding sodium bicarbonate to a hot sugar syrup - he could have that, too.

To drink - water.

Naturally he needed to take supplements, but they had to be checked out for ingredients on the banned list.

Toothpaste - it's generally mint-flavoured, and mint is very high in salicylates. We had to really hunt around. In some cases, you have to switch to cleaning teeth using sodium bicarbonate on the soap.

Water - we had to use filtered drinking water if at all possible, because of the added chlorine in our town supply.

As you can see, to do this right is really complicated. And restricting diet to such an extreme actually increases the risk of developing sensitivities to those few foods remaining (because you're in contact with it so much!)

You could try eliminating just one group and if you're lucky you could find a drastic improvement. But failing to find any improvement by doing it this way is no guarantee that it's not possible.

We did find we got better compliance from difficult child 3 when we explained just why we were doing this. He wanted to feel better and to be able to cope better, so he really made an effort.

I hope you can find some help and information on this. The doctors and the dietician I mentioned above did write a book titled "Friendly Food" which included recipes; it was for a wide range of food sensitivity problems and was well put together. However, I don't know how easy it would be to get, plus it was primarily written for Australian conditions. It was very cheap - much cheaper than many similar cookbooks, because I think they subsidised it. I'm also not sure if it's still available, although it should be because they're still doing this sort of work and people do need a book like this.

Good luck with your search - I hope you can find something that can help.

Marg
 

LittleDudesMom

Well-Known Member
I am definately not one to discount one's diet and it's relationship to overall behavior. I say go for it. It definately won't hurt difficult child. I googled meal plans/gluten free and came up with tons of links - here's the master link: http://www.google.com/search?hl=en&q=gluten+free+meal+plans

You might also want to go over to our Natural Treatment Forum and see if there is any information and suggestions over there.

Sharon
 

Josie

Active Member
Tryinghard,

Go to www.glutenfreeforum.com and do a search on diabetic eating. There is an increased probability of having celiac disease if you are a diabetic and the other way around so there are plenty of people with both on that board. If nothing shows up, register and post the question. People are very willing to help and you will probably get some answers pretty quickly.
 

tryinghard

New Member
Marg and Little Dudes Mom,

Thanks for the advice. I am going to go to the site right now and see if I can get some guidance.

I will try just gluten first and move my way through the others.

His behavior since the diabetes diagnosis eight weeks ago has gotten SOOOOO much worse. And he is eating a lot more wheat products becuase he has to eat a certain amount of carbs at each meal and snack.

Sign...sometimes I get tired of trying to figure out the puzzle...
 

susiestar

Roll With It
Have you seen an allergist and/or a nutritionist/registered dietitician? I would certainly want their input. We tried the elimination diet for difficult child and thank you, no reaction from either EXCEPT for food coloring and the stuff they add to meat when making sausage. I am blanking out on the word right now. thank you is also allergic to aspartame and acesulfame (Nutrasweet and Splenda). They told me "no one" could be allergic to Splenda but they went ahead and did a test - and he is. BIG shock to the doctor, I will say.

We only let a little of the artif sweetened stuff in the house for guests. I don't like to have packages opened because the chance of accidents. It is much harder to keep gluten or milk products out (thank you was sensitive to milk for several years, still won't drink it or eat pudding or ice cream made with milk). It is worth a try though.

Susie
 

Marguerite

Active Member
Tryinghard, if you are concerned about him eating more wheat as a way of eating the necessary carbs, try switching him to steamed rice. If you're not going to go the full bore with the elimination diet as I described (I don't advise it without a dietician supporting you) then try him on brown rice rather than white. It has more flavour, loads more fibre, I think it's got more taste as well. The added fibre will help the diabetes because it will slow down the absorption of the carbs and keep his blood levels more even.

I'm currently on a strict diet of my own (for weight loss plus borderline diabetes) so I've been dealing with similar battles. I'm allowing myself bread, but one one slice of wholegrain a day (I'm also cutting back on total intake). However, I've gone days without any bread, just the rice.

I eat the rice generally with other food. I cook in bulk one day a week and make vegetable-loaded beef casseroles of varying types. The leftovers (often several kilos of food) go into plastic containers in the freezer, with one container in the fridge. To get a snack I will put a serve of rice in a bowl or on a plate, put some casserole beside it (or on top, in the bowl) and microwave it on medium for 2-3 minutes. Warm, tasty and nourishing. Also filling.

My method of cooking rice in the microwave - I use absorption method, not rapid boil. Absorption method takes longer but you're not pouring away the extra water with any nourishment as well. With brown rice, rapid boil loses a lot of the soluble fibre.

I also cook rice without salt - it's how husband was taught by some Chinese friends. We can always add salt later. If you prefer to cook it with salt, just add as much as you would and otherwise the method is the same.

So here goes -

To cook rice by absorption method you need to bring it to the boil, then simmer. As the rice cooks, small holes appear on the surface via which the rice 'breathes'. These are steam holes, the rice has settled into an even cooking pattern. NEVER STIR IT WHILE IT'S COOKING.

Quantities - find a cooking container, preferably with loose-fitting lid. For the microwave we have a plastic Tupperwave jug but most microwave containers will do, as long as the steam can vent at least a little.

Put rice in the container, no more than halfway up the side. (Don't overfill the rice, or the container will overflow with cooked and semi-cooked rice). Add water, until the water level above the rice is about as deep as the first knuckle on your index finger. I've learnt to take it to just above the knuckle joint because I have short fingers.
For brown rice, add a little more water - I take the water level halfway to the second knuckle of my index finger.

Put the lid on. If you want, put a plate or other container underneath to catch any boil-over. Put it in the microwave oven.

Now, settings - remember, bring to the boil then simmer. I use 4 minutes on HIGH, followed by 10-15 minutes on MEDIUM. It will depend on quantities you're cooking as well as the power in your microwave, so change it as you feel you need to. if it boils quickly, you don't need as much on HIGH, for example.

For brown rice - it boils in much the same time, but needs longer to simmer. I tend to double the simmer time.

Once the timer goes, remove the rice, fluff it up with a fork, taste it for done-ness. if it's not quite done but all the water is absorbed, add a splash more water (about 30 mls or eight of a cup) then cook on HIGH for another few minutes.

I've found this cooks rice the best, especially brown rice. You will learn your own settings and your own water measures, but this gives you a really close estimate to begin with. You just need to remember the principles - the quantities, and "boil, then simmer".

Keep cooked rice in the fridge. Individual serves can be removed for reheating.

You can use rice as I mentioned (to serve with a casserole or stew) or you can make fried rice out of day-old cooked rice that's been in the fridge. Brown rice can be used too.

Fried rice - get together what you have out of the following list
onion (cut into 8 pieces then layers separated)
shallots/green onion (cut into 1" lengths)
prawns/shrimps (raw or cooked) cut into small pieces
Chinese sausage or chunks of ham or bacon, cut into small pieces, thumbnail size
red pepper, cut into small pieces (thumbnail size)
green peas - if using frozen, either pre-cook or add them early in cooking so they cook through.
1-2 fresh eggs
one finely chopped garlic clove
pre-cooked rice (at least a cupful)
light soy sauce
salt

You don't need all of these, just add what you have.
Get a non-stick pan with a thin smear of oil. Put in the ingredients in this order -
Chinese sausage/ham/bacon, onion, green onion, prawns, red pepper, peas, garlic.
Now make a space in the middle of the pan, break the eggs into the pan one at a time and break up the eggs into a rough scramble. Mix it through the other ingredients as it firms up.
Add the rice, splash in some soy and add salt. You need to balance the soy and the salt. You can't use all soy, or the taste is too strong.

A splash of sesame oil is nice too, if you put it in at the beginning. But use it sparingly.

It makes a really good meal, it's tasty and works with brown or white rice (although white rice is traditional). It's also really quick, at least as quick as 3 minute noodles.

If your kid is hooked on noodles, by the way, you can switch to rice vermicelli or bean thread noodles for gluten-free options. The noodles soften if soaked in warm water for a few minutes. You then toss them into the pan with your other ingredients, to warm through at the last minute.

Another thing you can do - find some Asian cook-in sauces and look for recipe suggestions on the side. We have a brand over here which has a Singapore noodle recipe.
Alternatively, do what I did above but instead of soy, use a teaspoon of curry powder, and use pre-soaked noodles instead of rice.

Leftover noodle or rice dishes can also be kept in the fridge and reheated in the microwave. If they contain prawns though, they should be eaten within a day.

I buy shelled prawns frozen and just grab a handful from the freezer when cooking.

Susie, I think the stuff they add to sausages is sulphate (used as a preservative).
The Splenda allergy - it could be some of the stuff they add to it. Our Splenda contains sucralose (active) with lactose, L-lycine and croscarmellose. If thank you had a problem with milk and milk products, it could be the lactose in the Splenda he's reacting to.

Marg
 

tryinghard

New Member
Marg,

I have to tell you, I am ALWAYS impressed with how much you know!!! You are one smart chick!!!

Thanks for the advise. I am planning on talking the the diabetes dietician at the hospital next week.

difficult child behavior has gotten so bad since the diagnosis of type one diabetes eight weeks ago. I really think there could be a correlation. difficult child is skinny and always little protein not carbs. Now he has to eat more carbs and most are from wheat.

I read on another site that 1 in 9 type one diabetes have Celtics (sp?) disease. I thought that was VERY interesting.

Like I said before..I wish kids came with a users manuel so we knew exactly what to do to help them.
 

Marguerite

Active Member
difficult child's behaviour might be worse because he's angry about the diagnosis. It's scary and at his age he probably doesn't want to admit to fear, so it comes out as anger and resentment.

Talk to the dietician about the gluten concerns, see what she says.

And I don't really know all that much, we just have had the experience of difficult child 3's diet, plus I read labels etc. difficult child 3 is obsessive about reading labels and he's got me into the habit!

Marg
 

RyMas

New Member
Thanks everyone for your input. We tried to introduce the diet this weekend but difficult child would not cooperate. He ate some of the food but ate some regular food. From what you are saying it only works if all gluten is eliminated. This is very hard to do and very expensive. I do not know if I can get him to commit. I will say that he is trying, we eliminated bread from his burgers and he also ate lots of fruit and vegtables. Getting him to try something new is a battle in itself, I'm sure you can imagine the battles I have. I will try to keep introducing new foods and maybe someday we will be totally gluten free and maybe even sugarfree.
 

Josie

Active Member
My children were 8 and 10 when I started the gluten free diet with them. My younger one had stomach problems and we found they were caused by gluten. That is what started us on this whole diet.

I tried it for myself, not expecting to have a problem with it, but doing it to support the kids. I noticed immediately that I wasn't tired or irritable any more. I also felt a brain fog lifting. I didn't even know before this that I had brain fog but I did think I was getting to have ADD and I never heard anything the first time someone said it. Since I wasn't irritable any more, I was convinced my older daughter, with ODD, would be helped by this diet.

At first, I gave her a month to get used to the idea and eat all of the foods she would miss. We made it for maybe a week before I couldn't stand it any more and decided we were not going to wait the month. I told her there was no reason for her to be so miserable if this diet would help her. Then I let her eat whatever she wanted that was gluten free so that we could see if it would help her. If there was something she wanted that she couldn't have any more, we substituted ice cream, candy, potato chips, etc. My goal was just to see if removing gluten would help. It was clear to both of us that it did, pretty quickly. She did go to a birthday party after the first or second week and eat their cake and came home with a tummy ache, sleepy, unable to concentrate on her homework, and in a bad mood the next day. That also helped her to see that she really needed to do this.

It isn't easy to do. We made mistakes along the way by thinking foods were ok that weren't. She does cheat sometimes but she agrees she needs to do it.

I still make sure that I have good gluten free/dairy free treats around for them to have. I make my own because the things you can buy are not very good. Surprisingly, their friends love my treats. I do not worry about sugar because I think that would be too much to ask. They have to have something "normal" to eat and they have to have something they like when every one else is eating their birthday cake or doughnuts. They still know if someone brings something to school that they can't have, I will provide a special treat after school.

Lots of ice cream is gluten free. Fruity and Cocoa Pebbles are gluten free. Skittles, Starburst candies, Snickers, Reese's peanut butter cups, lots of candy is ok.

What did your son have trouble giving up? Maybe I can help you come up with a substitute.
 

Marguerite

Active Member
It needn't be expensive, it's just a matter of changing your family menus around. When you do this you also begin to realise just how much rubbish we have sneaking in to our diets. But that's a separate thing.

It also may not matter if you can't eliminate it all. My friend who has Coeliac Disease cannot tolerate even a trace of gluten, or she is in serious pain for hours. She ate a caramel, thinking it should be OK - but reacted badly. Then checked the ingredients and found it had a trace of gluten.

Same thing with peanut allergy - for some, the merest trace can be enough. BF2 has a problem with pine nuts, so I've begun to make my home-made pesto sauce with cashews instead of pine nuts (Pesto is pureed basil leaves, toasted pine nuts, olive oil, garlic, salt, parmesan cheese). If easy child 2/difficult child 2 eats some pine-nut-containing pesto sauce on her pasta, she has to wash out her mouth and scrub her face before kissing him, or his face begins to swell. Some people with nut allergies are even worse.

But here, we're talking about sensitivity, not allergy. And with sensitivity, especially if you're not sure about it, often just cutting back on quantity can bring improvement.

He needs to be really on board with this, wanting to feel better or be able to think better. If you approach this as something you're going to work on as a team, so he learns to check labels, then maybe he will begin to be enthusiastic about it. It can also help him learn about different food groups (which he is probably going to be doing soon in school, if he hasn't already). Sometimes a way to win him over is to go through a supermarket together looking for foods he CAN have that are definitely gluten-free. And as fairlyoddparent just said, if you're just checking out how he goes without gluten you can 'bribe' him by being more liberal in allowing foods which are usually treats, as long as they're gluten-free.

I remember doing this before difficult child 3, with the other kids. difficult child 1 was 6 and his pediatrician wanted us to try a full elimination diet (as I described earlier - I mean the really drastic one) so I put ALL of us on it. He only had us on it for two weeks, which we could tolerate, before we began to introduce challenge foods. That's how I found that difficult child 1's behaviour would get worse with oranges, and anything containing caffeine. But the stims for the ADHD would generally block the reaction, we were told (since is was an impulse control issue). We did find that oranges were OK, but even on his stims, caffeine would 'break through' the stims barrier and we would have problems for several days until it washed out of his system. Now he's older though, he seems OK with caffeine. I think he's learned better control as he's grown.

I cook a lot of stir-fries, and it's fairly easy to do these as gluten-free. The best thickening agent is cornstarch, but it's tricky sometimes to find the real stuff (which is not expensive). Maybe you get better truth in advertising in the US, but in Australia we get sold "cornflour" which is actually made from wheat. Sometimes the label says "wheaten cornflour", but I've learned to look for a certain brand AND read the fine print.
True corn cornflour mixes in water much more easily than wheaten; it thickens clear and not cloudy (so it makes a great glazing sauce); and if you mixed up too much, you can actually let it dry, and the cornflour is perfectly safe to put back into the jar! You can't do that with any wheaten flour at all.

If cooking stir-fries you do need to check the sauces for gluten, but you can buy gluten-free soy sauce, for example. But unless you're coeliac, you may not need to go to that much trouble.

My coeliac friend recently married, and her mother made the wedding cake as a gluten-free chocolate mud cake, using ground almonds and separated eggs. It tasted wonderful. I was there for the testing of a number of recipes too, and even the failures tasted pretty good.

Good luck with it, I hope you can find some answers.

Marg
 
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