Tantrums?

[debbie-doodles]

I have a two and a half year old who was just diagnosed a few days ago. She has been having some serious temper tantrums like none she's ever had. She acts really mad at me and hits, bites, and pinches me. (i'm the one who has taken her to all of her dr. appointments because my husband travels and has been out of town for a month so she gets really mad at me) She used to throw tantrums like any other two year old would. But lately the fits have been absolutely crazy and ALL the time. I'm starting to pull my hair out. Has anyone else noticed that their kids with celiac disease throw terrible fits when they aren't feeling well.? How long should I expect them to last?

[Kasey'sMom]

Oh my Debbie,

I could have written this post myself. My daughter is almost three and she can throw horrible tantrums. Today has been one of the worst days in awhile. I finally just had to lay her down for her nap, two hours early. Sometimes she is an angel and somethimes hard to do ANYTHING with. She felt great for over two weeks without any gluten and we had no tantrums. We ate out on Sat. and she must have gotten cross-contaminated food. By Sat. evening she was feeling really bad. We've noticed that it takes several days after she's eaten gluten to recover. She's such a sweet child and I know she must feel terrible. Her doctor said that this Jeckyl and Hyde complex is very common in Celiac Disease. I'm really having a hard time with discipline when she feels sick. We're trying to help her take control of her feelings but sometimes she gets angry for no apparent reason. For the first time today she unbuckled her car seat, while is was driving, because she was mad. I wish I could give you some advise but I just want to let you know, you're not alone.

Best Wishes,

Kasey's Mom

[debbie-doodles]

Kaseys'mom, I'm so glad that it isn't just my child. She used to be little miss social butterfly, having fun and being so nice and friendly. But lately, especially after all of her doctor's appointments (6 in 2 weeks and 2 hospital visits) she is really acting out.

I'm with you--I hate coming down on her hard for her behavior when I know she's feeling so horrible. But I can't just let bad behavior go with no consequences. She's only been gluten free for a few days and hasn't even really started eating much of anything yet and she also has broncitis and an ear infection (we have surgery for tubes next week) so I know it might take a while before my sweet daughter is back.

Maybe someone else has ideas that will help both of us.

[Kasey'sMom]

Wow, Bless you hearts! Sounds like you guys have been through a great deal. My thoughts are with you all.

We started making the transformation to a gluten-free home in December and we can tell a big difference. Having said that, we haven't been very lucky when we've eaten out. Our area dosen't have much knowledge about gluten intolerance and most people don't even know what it is. We've finally decided, after the episode this weekend, we can't eat out for now. We're traveling to a ped. derma. on Wed. and I'm hoping she can shed some light. I'm trying to plan meals to take for the next few days and it's overwhelming. Usually, we can tell a difference in her skin and temperment within four days or so. Kasey seems to be so much better when we eat at home and I think that she is sensitive to colorings, additives, and sugar etc. We're also doing the casin free/sugar free diet for now. I think her problems are made worse by candida. I found that when she's sick things seem much worse.

She needs to have another round of blood work for EMA & tTg but I don't know if we all can stand the gluten challenge. I wish our insurance would pay for the Entero Lab stool test but I don't think they will.

This is a difficult age much less having health problems. I keep hope that the older she gets, the more in touch she'll be with her body and health. Now they have a hard time verbalizing how they feel.

You're in my prayers,

KM

[kaylee]

Hi,

you are definitely not alone! The relation between acting out (mainly screaming) and physical state has been clearcut since my son was about 6 months old. He's now 2 1/2 and has been on the diet for just over a year. Jekyll and Hyde was exactly how I described his different sides to the gastroenterologist on our first visit. I am still amazed by how radically he changes when he is feeling off in general, whether it is gluten related, and in his case particularly if he has had even small amounts of any dairy product, but also if he is sick with something like the flu. He is probably reacting to the discomfort (with gluten it is severe pain), but I really think there is some other, I don't know, chemical imbalance reaction going on in the brain. I have seen the mood changes often enough now to be pretty clear that when they're food induced he doesn't have a whole lot of control over his behaviour. THe last time he had dairy by mistake and reacted with a severe and prolonged tantrum about 6 hours later, he became lucid for a few seconds at one point and said "I want to stop screaming!" It's hard to express adequately my feelings about that, but it breaks my heart thinking about what he must be going through in those moments...

Anyway, given that for us it took removing both gluten and dairy before the screaming cleared up, have either of you checked out reactions to dairy? Just a thought. Another thought is this: my husband in particular was very concerned about discipline for the apparent bad behaviour during tantrums (especially because they usually seemed either to come out of the blue or were triggered for the most trivial (in our opinion!) reasons). Our new pediatrician said "Get his health figured out first. Once he's not suffering any more, or at least not as a way of life, then you will be able to go ahead and teach him to control his behaviour, to move past instant gratification, etc etc as much as you want." With this thought we really just put all our energies (and man oh man did we need a lot!) into giving him the best diet possible and being as patient and present as we could. Support for the parents is very, very helpful during this time! Coming out on the other side and seeing the transformation in our son, I'm glad of the road we took no matter how trying it was for a while. Now I can really tell the difference between a normal tantrum (never lasts for more than 10 minutes, which is still a lot, but they're infrequent thank goodness) and a food-induced one (can last up to 2 hours), and I react to them totally differently, teaching and refusal to give in to demands for the first, holding and love for the second.

Best wishes to both of you. Your obvious caring and concern will make the difference in the long run.

Kaylee

[Kasey'sMom]

Kaylee,

Thank you so much for your inspiring message. My husband and I are pretty down tonight because of her temperment today. We sometimes get frustrated becuase our medicial team is just now coming on board with us. We noticed the change in October and this has just gone on to long. I'm really looking forward to meeting her Ped. Dermatologist. I started Kasey on a candida diet about 6 weeks ago, no sugar, no dairy and no gluten. She seemed to get better for a few days. Then we would eat out and the cycle of anger and rashes would start over again.

I'm so proud that I've got two coolers full of food for our upcoming trip. Now I don't have to be so concerned about cross-contamination. The last few days we've decided that she needs to be off gluten and dairy regardless of what tests need to be done. Her immune system is taking a big hit. Thanks again for the information and the discipline advise. Most of the time we just have to let her work through it. Until she calms down you can't talk to her about what happened and most of the time she dosen't even know.

Thanks again,

Kasey's Mom

[debbie-doodles]

wow, you guys are great! I'm feeling much better now. I thought I was gonna lose it. My husband has been gone for a month and he comes home for one week, then leaves again. I've been doing this all on my own and its really starting to be unbearable.

My daughter, Leah, had bloodwork to check for dairy intolerance, but it was negative. I am keeping her off of it though while she heals.

I'm feeling pretty good today because there were no major issues and she actually took a bit of a nap. I'm just anxious to see my daughter be all better.

Did you guys notice in the beginning of the diet that your child didn't really eat much of anything? Not that she doesn't like the food because even when I offer her some of her favorite things, she turns them down. She seems to be pretty picky with her food right now. Is that normal do you think?

[cdford]

Having dealt with celiac disease/DH as both an adult and the mother of a child with it, I can honestly say this: it is not hard to imagine a young child who feels as flustered and out of control as I do when I don't feel well who doesn't try to find a way to express that frustration, positive or not.

A good distinction was made earlier. There is a "normal two year old tantrum" and the kind we see when the physical symptoms set in. Similar coping mechanisms need to be taught, but are much harder for the child with the physical problem. We worked hard at teaching ours to recognize the first signs of a problem, realize what was occuring, and take control of the situation and himself. That gets easier as they get older. Just helping them to stop (literally), look at you, and voice or point out what is not right is the starting point. They begin to learn what they are supposed to feel like and what they feel like when their body is not right. Over time, they learn that they can control their actions even when they cannot seem to control their feelings. Don't we all know some adults we wish had learned that lesson?

Do your best to be patient. Don't give in. Recognize what is going on...the child is trying in the only way they really understand to convince somebody that something is not right. The process of getting them past this takes time and will stretch you to your limits. Don't hesitate to walk away when you sense yourself getting out of control. If the tantrum occurs in a public setting, attempt to get it to a private one. I have had to leave a buggy full of stuff at the store and head to the van to let it run its course.

For some kids, you might find a way to discipline this out of them. For others, especially when it is the result of an illness, disciplining won't accomplish much and will frustrate you both. You know your child. Decide ahead of time what actions you will take so that you are not caught off guard. When you have a game plan it is much easier to follow one.

Last of all, love that kid. Love doesn't stop because behavior is bad. Kids need our love most when life throws them a curve or when they don't know how to ask for it. Let your child see you taking action to help him. Talk to him about what actions you are taking ("Calm down and come with mommy and we will get something to help your tummy stop hurting.") Yes, that's easier once the tantrum is under control. If they see you consistently trying to help them with what is wrong, they will eventually stop turning to the tantrums to get some help. Note that eventually was the key word there. This is not a one time prospect.

Lest I sound holier than thou here, let me say that what worked with one of my children did not with the other. She almost drove me mad trying to find something that worked without resorting to a good old fashioned beating. The worse she felt, the more obstinate she became and the harder she made it to help her. We had to do a lot of staying on our knees. I literally had to tell her that I was going to my room to pray and she had better get to hers and do the same. It was my way of exiting before I lost it. A few minutes of quiet and prayer also helped me to see more clearly and less angrily. We made it through, but it was touch and go for a few years there when she was sabbotaging her diet at every turn.

Hope this mini-novel helps someone out there.

[Guest taweavmo3]

This has been a great thread.......some very useful tips from those that have made it to the other side!

About the tantrums.....we have been on the diet for two months, and things have improved greatly. Although, over the weekend, I can say with almost absolute certiantly that we must have had a gluten accident. I didn't realize how much better the tantrums had gotten until she slipped backwards into one of her doozies. It lasted on and off throughout the day. She would scream, pull her hair, and bang her head on the wall for no apparent reason. It was just like the pre-gluten free days, and I was exhausted by the end of the night. Prior to the diet, the monster tantrums were a daily occurence for us. We never went out, even having people over was too stressful for my little girl.

It wasn't until last week that we finally went to church in over a year.....and for the first time, Emmie was actually happy to go to her class. She used to cry the entire time and was miserable. She used to cling to me like a little monkey, wanting to be held but not touched. She is a different child now, I feel like I am finally getting to know her for the first time. She still has tantrums, but they are much more manageable, and we can reason with her now. We can finally start using discipline techniques like a time out spot. Don't get me wrong, she is still a little spit fire, but I think part of the problem is that she hasn't learned any proper coping skills until now. Screaming and lashing out has been her only way of dealing with conflict until now. So, now that she is feeling better, we have alot of work ahead of us!

I didn't realize how obvious a gluten accident would be until we had one......she went completely out of control the entire day. She also had diarrhea and broke out in a diaper rash. It was terrible. So, you are definatley not alone in this! Dealing with the emotional side of this disease is as hard or harder than the logistics of getting the hang of the diet.

Oh, and Debbie Doodles........I did notice that Emmie didn't eat much of anything about a week after starting the diet. It took a good month I would say before she got her appetite back. I'm not sure what the reasoning is behind it, but she ate like a bird for a while. Before the diet, she would eat ALL the time, and the food would go right through her. Maybe they finally feel full on this diet, so they eat less? I don't know....but Emmie did the same thing.

[kaylee]

taweavmo3 - crying and clinging, not being able to go out ... that is exactly what we went through!

Also, in terms of gluten accidents, I think that the longer my son is gluten free the worse his reactions to even the smallest amounts of gluten are getting. He reacts to a trace amount in the same way he used to react to a full serving (e.g. we had a terrible bout following his taking one (one!) gluten-free potato chip at a daycare birthday party that was made on a production line that makes other gluten-containing items - where the company puts a warning on the package "this product does not contain gluten but sensitive indiviudals may react ..."). I am really hoping for his sake that his reactions will get less severe with age, but a lot of adults unfortunately seem to describe the same thing.

The other thing I just wanted to underline was, Debbie, I know how hard it can be, doing this on your own. My husband also just got back after a month away. But, at least in my case he's not headed right back off again and we basically have things under control (one gluten and one dairy accident, though, during that month). I hope you have good other sources of support!

Best,

Kaylee

[mommida]

When I was researching into this diet, I found an article that said some kids have an addiction to wheat. Not to put a label on any child but it was about autistic children being put on the gluten free, casein free diet. The tantrums and head banging desciptions are the same.

Remember, you are now telling your child they can not have what you gave them to eat days, weeks, or months ago. They are p.o.ed, and are directing the anger at you. Get your gluten free diet replacements ready, read the gluten label out loud, point out the gluten on the label, and tell them it will hurt them, and let them pick from the safe stuff. Give them back the control when it comes to the safe food choice. It is not stupid to read the label to them when they don't understand, because this is how they are going to live the rest of their lives and they will learn more from your actions than the words.

I'm in the same situation. Take it day by day, and give yourself some credit for the great job you do.

Laura

[debbie-doodles]

Tamara, that is exactly like my little girl. She ate SO much before and would always beg for food--but was under weight because it kept coming out right away. Now she eats hardly anything. I have a hard time getting her to eat even a tiny bit. And she won't eat things she normally would have. Its hard to adjust to, but I just try to go with it.

[cdford]

Another mom posted a few weeks ago about their two year old walking through the house picking up items and "reading the labels". Some had gluten and some did not. Even when they cannot read or understand the whole thing, they do catch on by our actions and they will model whatever level of care we show in checking for gluten. It just takes some of them more time to figure it out than others.

[aili]

my daughter's really started temper tantrums (as opposed to pain tantrums) a week into our CF/gluten-free/SF diet. I discovered that one cause was sucrose, so we cut out sugar too. The other cause was due to a hypoglycemic reaction; she was hungry. she would calm down as soon as we got her to take a bite of something (not an easy task!)

When she was on a gluten diet, i think she just may never have had the energy to spare for a full blown tantrum.

[Guest nini]

wow great thread! My daughter and I have been on the diet for over 2 years now, she's 5, and I remember VIVIDLY the out of control behavior that she would have, way worse than a 2 year old temper tantrum. She would kick, scream, hit, bite, thrash about on the floor, couldn't stand to be touched... we thought at first it was related to sugar, but eliminating sugar didn't stop it. What would break my heart, was when she would collapse after a several hour tantrum and just cry and say "sorry mommy I couldn't help it" She's a very sweet child so that behavior was so out of character that I knew something was wrong. She also wouldn't eat hardly any food, now I know it was because it made her tummy hurt. She also got the terrible diarreah and diaper rashes... Now that she's been gluten-free for 2 years, she eats like a little piggy!

[tarnalberry]

Just thought I'd add...

I don't have any kids, but day 3 and 4 of my reaction to gluten, if I get contaminated, makes ME feel like throwing a tantrum - and I'm 26! (I opt, instead, to just tell my husband that I'm feeling uber-cranky, and the best bet is to leave me alone, 'cause otherwise he'll get to socialize with an irrational "w"itch. )

This is not strictly from pain, either, this is a mood thing that happens when I get glutened.

[Merika]

My ds gets all out of whack when he gets into soy. Even the tiniest amounts. It takes about 24 hours for symptoms to start, and usually takes me well into the next 24 hours to figure out what's going on. Now that I've been aware of it for almost 2 years, I can see a clear and distinct pattern to the soy working its way through him and know what to expect and how long it will last.

It takes about 4 days to work through his system. More or less in order, he first shows dark circles under his eyes, then around his anus gets sensitive/itchy and red, then he gets slightly constipated (or maybe that's later), then he turns into an emotional basket case and freaks out at the slightest thing and is impossible. Then eventually by day 4 things are calmer and finally it is all over. Around day 2-3 his tummy doesn't feel so good as well and his digestion is off.

For a long time, it wasn't until about 6 hours into the basket case phase that I would really clue in to what was going on. My normally calm and wonderful child would be making me nuts and I'd find myself screaming at him and wanting to tear my hair out - not our usual stuff. And then it would dawn on me - ding! soy! And I'd go on a hunt to figure out what it was. I've done a lot of sleuthing.

Sometimes I don't find the culprit til months later (like the time he was sick and I gave him gatorade, as I had in the past. Turns out for a few months last winter they were adding soy to it! It's gone again from the labels, so I guess I really do have to check every label every time....)

I have learned that when ds gets into soy and hits the basket case phase, it works best for us if we have a quiet day or two at home, with no ambition to do anything or get anywhere, if possible. Letting him be is the best policy, and a little extra coddling, and some ginger tea to help the tummy. Just knowing what is going on with him gives me lots of extra patience, as I feel bad for him, and adjust my expectations (temporarily) to fit the circumstance.

hth,

Merika

ps. and I think it was my ds who someone mentioned roams around reading labels for gluten....(and soy too...)

[cdford]

The endo doc told us that the body reacts to gluten almost as though it is an addiction in celiac disease. You may find that if your child ever gets into it accidentally they go through a period of time when they crave stuff they should not have. We certainly did.

Those of you who are still in that stage where you are dealing with the temper tantrums, know that this too shall pass. The longer your child is gluten-free, the easier it will be to get past some of this.

There has been so much great advice on this thread. It is good to see you all sharing and encouraging. Keep it up. It is when we feel that we are all alone and struggling hopelessly that we need this site the most. It is also the time when we are the most likely to give in and give up.