Coping With Kids' Gluten Accidents...

[seeking-wholeness]

Hi, everyone!

I'm just looking for ideas on how to deal (emotionally and practically) with the wild, crazy behavior of my kids when all three of us have a gluten accident at the same meal (which is usually the way it happens). I get the impression that the standard advice I read (in Kids with Celiac Disease, for example) assumes that Mom does NOT have celiac disease herself, and my situation is somewhat different. When I have an accident, I get extra tired (on top of chronic fatigue syndrome), depressed, cranky, and very irritable--all the feelings I should NOT display when dealing with my kids. And when they have an accident, too, they (naturally) end up pushing my buttons big time! I mean, my younger boy will absolutely refuse to have his diaper changed (even if he is sitting in diarrhea and developing a nasty rash)--and I am barely strong enough to force the issue when he is being particularly adamant in his refusal. He also can't sleep longer than 45 minutes at a time, even though he needs at least twice that much sleep at naptime--and as often as not, he doesn't go back to sleep, even if I interrupt my day and nurse him for twenty minutes. And my older boy becomes stubbornly uncooperative and hyperactive--and he takes off ALL his clothes (at least when we are at home)! It's almost funny that I can tell he's had an accident when he comes charging into the kitchen naked! Both boys also turn into screeching whirling dervishes, demolishing the results of any cleaning efforts I have managed to make!

My family (parents and grandma) are appalled at the state of my house--which isn't as bad as some I've been in--and can't believe I let my three-year-old run around the house naked. They also think I let the boys "get away with too much." I try to brush off their criticism (especially about the nudity issue, since he no longer strips randomly when we visit friends). But I WOULD rather live in a reasonably neat house, and I wish I could find a way to retain a shred of parental control over my kids' behavior without it degenerating into a screaming match! Negotiating ("if you put on your underpants, I won't bother you about the rest of your clothes") and offering choices ("do you want to wear underpants or a long T-shirt?") don't always work, and time-outs for hyper, destructive behavior have no effect at all. I just don't know what to do to abort their poor behavior once it has started--and I can't explain to most people that it is a gluten issue, because they will just accuse me of trying to dodge my responsibilities as a parent! Help!

Thanks in advance for your replies--you guys are a great help!

[ROYAL BLUE]

Sarah, I know exactly how you feel. One of my sons is Celiac and his explosive episodes sound so much like your childs. Is this type of behavour typical of celiac children? I've been almost hoping it is. I cannot control my child half the time. I hate to take him anywhere, I get so embarrased of his inappropriate behavour sometimes. I could just sit done and cry.

[seeking-wholeness]

ROYAL BLUE, I can understand your frustration. My son doesn't usually act terrible in public; he saves it up and lets loose at home! I think uncontrollable explosive behavior probably is fairly typical of celiac children. Hey, I'm not a kid anymore, and I STILL find it impossible sometimes to control myself when I have a gluten accident. If it's a big one or if I've had several close together, I might throw things, scream, cry, say hurtful things, slam doors, bang my head against the wall, contemplate suicide, and otherwise overreact to minor nuisances! I had berated myself for years for my childishness, but after I went gluten-free I discovered that it wasn't a self-control issue in the first place--it was a neurotoxicity issue. I have become MUCH more emotionally resilient since going gluten-free, for which I am eternally grateful: my life actually feels worth living now, EVEN when it isn't going perfectly! My main dilemma at this point is that my kids push my buttons most when I am least capable of reacting rationally, and I'm not sure there even IS a solution. If I figure anything out, I'll be sure to let you know!

[wclemens]

I want to say that I can totally identify with what you all are saying, having raised three kids, and helped in raising 6 of my 7 grandkids. When my kids were little I was undiagnosed but had been Celiac since age 8. I suspect that my 3 were also gluten intolerant, and they're now being tested. My newest grandson has already been diagnosed Celiac and allergic to milk and dairy, and I keep him while his mommy works weekdays.

I think we are very blessed that we have 3 caretakers for our little guy, because when he gets forbidden foods it is an almost intolerable situation. Nothing will work in making him the happy little boy that he is when he is gluten free, except time (usually it takes 3 days to get out of his system).

Do you have a support system, or could you put one together, for times when you need a break? Maybe another mom with Celiac kids, or a grandma (the interesting part is probably your relatives have Celiac too, since it is genetic). It's got to be so hard to be in the midst of an episode and not have help. I'll be hoping that you find someone who can tolerate the shrieking, wild behavior, sleeplessness, irritability, diaper rashes, diarrhea, stomach cramping, etc. that go along with gluten ingestion. You sound like outstanding mommies, who are doing such good jobs! Welda

[seeking-wholeness]

Welda,

Thank you for the encouragement! I don't FEEL like an outstanding mommy; an outstanding mommy would manage to avoid giving her children contaminated food! My only consolation is that we are reacting to foods that SHOULD be gluten-free, unless they have a hidden source of gluten or got contaminated at the factory: a boneless turkey breast with no additives listed, gluten-free cereal, Rice Dream "ice cream" (which I read somewhere IS gluten-free, although the beverage isn't--but maybe that's not true), most DRY AND CANNED BEANS , and most recently, Planter's dry-roasted unsalted peanuts. This last one was especially interesting because I was the only one to eat them--but the baby reacted about six hours after I did, when the gluten came through the breast milk! It was so sad; he latched on, slurped for a bit, and began to cry while he nursed. I wanted to cry, too--but what else can I feed him? He still needs the nourishment from my milk because beef and pork are too hard for him to digest, he's sensitive to ALL dairy except ghee, he may be sensitive to eggs, beans cause a reaction (and the jury is still out on tofu), and he is still too young for nut butters or fish! He pretty much lives on rice bread and margarine, cooked rice, canned peas, uncured turkey hot dogs, and tiny amounts of fruit (any more than that will ferment!). I can't get him to take liquid vitamins, either, and I'm just not willing to turn it into a daily wrestling match!

I SOOO wish that I had someone nearby to spell me when the boys have a meltdown. Unfortunately, both sets of grandparents live out of state, all of my friends live an hour away, and we don't have any money to hire a babysitter right now. I just don't know what to do! To top it off, my husband has been working late practically every night this week (because he has to, not as an escapist tactic). When I was growing up, my father was ALWAYS home by 5:30, so this business of never knowing when my husband will get home until he walks in the door REALLY gets to me--not to mention that when HE works overtime, so do *I*, and *I* never get compensated for it! I have decided that I will cook, wash the dishes, do a bare minimum of laundry, and keep the kids from killing each other, but cleaning the house just doesn't make the priority list. I spend a lot of time online, too, of course, both because I think I deserve to do SOMETHING I enjoy and because the kids usually stay in the room with me, so I can keep an eye on them easily.

It's really ironic: our closest friends right now are a family of four with kids the ages of ours, and I'll bet they ALL have celiac disease--but they don't know it, and I doubt they will ever get tested. It's a pity, because we could support each other through the rough times if only they knew! You mentioned a "celiac magnet" in another post, and I have to agree with you--my running tally is ten of my friends/close acquaintances and seven of their kids who should definitely be tested for celiac disease (and I still feel like I'm forgetting someone)!

Well, now I'm rambling. Thanks again for your kind wishes, and I hope you are doing well!

[Guest aramgard]

Sarah, I remember the days of kid's being sick and no one to spell you. I spent one whole summer in the house with kid's with measles (one at a time of course), the Rubella, then strep. Make the kid's your priority. Clean house only when you need to clear the way, you need the rest. When your husband gets home, let him take over and go for a much needed walk or nap. That was my solution. The house will get cleaned when everyone feels better, but you do not need to make yourself ill. Don't be too hard on yourself. You are the backbone of the family and really need support, so support yourself by being good to yourself. Shirley

[kejohe]

Sarah,

Your story breaks my heart, but at the same time I so know how you feel. I can say I'm at least a little luckier in that I only have 1 child to drive me nuts, but when he decides to be a brat, watch out! I think that temper tantrums come with children whether thay are celiac or not, but the common level of severity in celiac children seems to bear mentioning. I really do think there are some definitive links between behavioral issues and the celiac disease.

It seems to me that a large amount of celiac disease kids are also ADD or ADHD, so maybe a discussion with your ped about possible medications might work. Also, my little brother was ADHD when he was growing up and his doc mentioned giving him coffee to chill him out. Supposedly the caffine has the opposite effect on kids with these disorders than it does on the average person. I'm not saying this works for sure, but a qualified MD suggested it so maybe it does work...

Other than that, I think you should take Shirleys advice, and don't worry about the cleaning. This kids are your priority, maybe someday, when they get old enough to recognize that their issues are a result of their celiac disease, they will remember all those times that you were still a Mommy even when you were suffering too.

And also, when your hubby gets home at night, even if it's too late to get out of the house, do something for yourself, take a long bubble bath, have a bowl of gluten-free ice cream with all the fixins or watch a chick flick with a nice glass of wine, what ever makes you happy for an hour or two. For me, even going grocery shopping in the middle of the night was relaxing, because it was time to myself.

I hope this helps a little, and remember that we are all here for ya!

[gf4life]

Sarah, I have a different situation, since I am now gluten-free and my kids are still on gluten waiting until they are done testing. Their blood tests should be back this week, and if any of them are neg. on blood, but positive on the gene I will have them on the gluten-free diet as a precautionary measure. Until then, they are eating what ever gluten foods they want. Let me share this story with you about something that happened they other day.

Okay, it was my second day gluten-free, and while my boys were at school my daughter and I went grocery shopping. All my gluten-free foods were on the kitchen table, and I needed to clear off more shelf space to dedicate to gluten-free foods, so I hadn't put them away. I wasn't feeling too good so after I picked up my boys I went in my room to read a book. Now my kids are 4, 7, and 9, and are usually well behaved, so I didn't feel like this was a problem. I could hear what they were doiing, so all was okay. Wrong! My father had given the kids a set of snap together toys that have little motors and wires you can plug in to the little battery compartments, and I could hear the kids playing with this. They have little fans and other rotating parts that they snap on to it and they can create different "inventions". They all know my one main rule is that they keep the rotating parts away from my daughters long hair, and other than that they can do what they want with it. They totally took advantage of that rule! We had let them pick out this snack mix (sort of like Chex Mix) last time we were at Costco, and I had tried to get them not to drop too much on the floor since every single piece has gluten in it, and I am getting tired of cleaning it up. So instead they take a bunch of pieces and grind them up into a powdery substance with their "invention" and the powder was spead all over the kitchen table and all over my gluten-free foods! I wanted to cry. I tried to control my temper, but I was very upset at the kids for doing this, and I just can't stand the thought that all of the outside packages of my gluten-free foods are contaminated. After I cleaned up the mess, I sat down to explain to the kids that not only was it wrong to make such an awful mess, it was a waste of food, and it all has gluten in it and can make me sick if it gets in my food or on my hands and I forget to wash my hands. I can only hope it never happens again. I doubt it will, since I threatened to take their toy set away if they do anything like that again!

Well, I just wanted to share my story. At least you don't have a bunch of gluten snacks in your house!

God bless,

Mariann

[seeking-wholeness]

Mariann--Oh, my goodness!!! That's awful! It must have been nearly impossible to control your temper--I don't know how you managed it! I hope you don't get sick as a result of your kids' escapade, and I hope they got the message and don't pull a stunt like that again!

Shirley and Kathleen--Thanks for the suggestions! I do foist as much responsibility on my husband as possible when he gets home, but I rarely get time to myself because I am almost phobic about driving (and we have only one car anyway). I am actually an entirely competent driver, but I HATE doing it and am always afraid I will be in an accident. Maybe by the time the weather warms up I will have made enough improvement in the mental health department to tackle driving again; it would certainly open up a lot more opportunities for me to get away from it all for a few hours! This past week has been especially rough: my husband got home at 1:30 in the morning on Wednesday/Thursday and Thursday/Friday and 5:30 in the morning on Friday/Saturday; then they asked him to go in to the office on Saturday evening, and he didn't get home until 3:30 in the morning--after which, we got up and went to visit relatives that live two and a half hours away (and he spent most of the day on the cell phone with his coworkers)! I'm definitely ready for the weekend now--but it's already over! I just hope this week goes better, now that the deadline is past!

[donnalois]

Dear Sarah,

Hang in there, as the kids get older they do start to realize their emotions a little better. My older daughter (now 6 1/2 years old) never slept when she was 1 1/2 to about 3 1/2 years old. My second daughter (now 4 years old) slept OK but never diaper trained until she was gluten and dairy free. Both were diagnosed around 3 1/2 years of age. (1) get yourself a high energy, age appropriate toy that works indoors the children love and it "REALLY" tires them out. We have a "spider stomper" game from Zellers, favourite fast music to dance to and do exercises, and a Jump-O-Lene. When they both get driving me crazy, I crank up the favourite music, blow up the Jump-O-Lene and sit and watch them jump out their energies. Both girls have been thru gymnastics classes. I also complained to our pharmacist that they have "lactaid" for the milk intolerant but nothing for gluten intolerant at times for those little accidents at restaurants etc. He recommended a specific over the counter digestive drug that was safe for a four year old. If we have an accident, I give her one and hang out close to the bathroom. An hour later and a few runs to the washroom and it clears out her system so we can have some safe food and a happy girl again. It also took the tummy ache away within 15 minutes of swallowing. I am just a stay at home mom though, not a doctor, so ask your pharmacist if they have anything to speed up the gluten out of their system faster that is safe for the age of your child. Prior to that I would sit on the couch and rock my daughter while she literally screamed and clutched her stomach for up to an hour after ingesting gluten. A couple times I have tried recording the outbursts and playing them back to her when she feels better so she knows it is not just mom being unreasonable .

Good Luck

Donna

[seeking-wholeness]

Donna,

Thank you for the suggestions! The boys are having a cooperative day today, more or less, so they are actually playing nicely together and letting me have some down time right now, which is really wonderful! They certainly do enjoy active play, although I rarely notice it tiring them out. I will have to look into digestive aids to help control their symptoms. I have read that the enzyme glucoamylase may actually detoxify SMALL amounts of gluten, making accidents less problematic, but I'm not sure whether it is available as a single product. I hope it is, or that I can find something else that works!

I hope you're having a great day!

[kejohe]

Hi All!

I heard not too long ago that the drug companies were working on a possible pill for gluten intolerance that acts much the same as the "lactaid" you mentioned above. Apparantly, it helps ease the symptoms that occur when you have a gluten accident. The FDA is taking a look at it now and considering it for release on the market as an over the counter drug.

That would be so great if they could come up with something to help ease these sympotoms. I know for my son, he stays sick for so long and is just miserable, I would love to just be able to give him a pill to ease all his troubles.

[jeremy'smom]

sarah-

wow, really know how you feel, my gluten-free 4 yr. old was basically naked for years (mostly in and around our front yard- yikes) We are the only people we know who live in southern california but don't dare visit disneyland. I do have a few suggestions: don't discount the power of the BATH TUB. Jeremy basically lives in there when he has had/ is having a reaction. Besides obvious reasons, he is in a calming, contained environment. After learning to remove all bathtub toys and giving him bathtub crayons or toys which can be easily cleaned, i feel less frustrated and he is happy.

I also agree with another poster who shared her belief that emotional/behavioural problems were common with celiac. I often feel extremely frustrated (especially since his worst behavior always seems to be just before the tell-tale diahrrea) so i have basically punished him before realizing that he is having a reaction.

I mentioned to my pediatrician that i should probably find a support group for mothers of sick children, tho my son appears to be thriving most days, punishing him is really challenging since his reactions are so severe. My husband complains that i over punish or baby him, i feel like it is hard to find a middle ground.

one more suggestion: i supplement with an extra vitamin (rainbow light) and lots of water when Jeremy has a reaction. seems to help speed the recovery and gives his body a chance to calm down before night so his night terrors are not so bad.

Remember, you are doing a great job, mothering can be so tough.

brooke

[kyss]

I know this is a topic that occurred in January, but I am new to this and hope I do this correctly. In the past 3 months I have discovered my mother is positive for celiac disease, my sister is positive for celiac disease and I also tested with an IGA AB of 200.

I suspect that my daughters (11 & 7 years old) have celiac disease. Based on physical symptoms of altered bm and my 7 year old has anemia, but I also noticed similiarities in behavior while I browsed thru this forum. My youngest has gone to her PCP and Psychiatry for ADHD 1 year ago and she was put on Strattera. It seemed to work and then not work and then work. In August 2004 she was give the diagnosis of Bipolar Disorder and placed on anti-seizure meds, again they work and then they don't. She is very hyper and weepy and tired and abnoxious, and mean. It seems to be a cycle, however she also seems to be weepy and tired when she doesn't eat regularly (the drive home from school at 3pm is rough). She as an infant also had Reflux and was placed on Reglan and a "Special Formula". She is 7 and weighs 49 pounds and that was hard to acheive.

I also think my 11 year old has celiac disease as well, because she is always constipated and has eczema that doesn't look normal...she is also on a medication for depression. She also is having fluctuations with her Thyroid gland. She is tired all the time and doesn't want to walk unless she has to.

Could this situation with my children's behavior and celiac disease be linked??? I just think sometimes my house is an insane assylum. Any response is helpful.....

Thanks for letting me ramble......

Kelly

[gf4life]

Hi Kelly,

Welcome to the board.

Celiac is genetic, and I think it would be wise to have your daughters tested. Their behavior and physical problems could be related to celiac disease, but they also might not be. Testing them is a good idea.

God bless,

Mariann

[kyss]

Mariann,

Thank you for your reply. I have an appointment with a Pediatric GI Specialist on Wednesday for both my kids. I am dreading the blood draws, however I am dreading the biopsy for them even more. My mother says it isnt too bad. I have mine scheduled for 4/26/04, so I guess I will see how it goes. I just wonder if a biopsy is absolutely needed for my kids. I don't want to put them through something they don't absolutely need. I guess I will see on Monday what the GI doc says. Again thanks for your reply, I really appreciate it.l

Thanks,

Kelly

[hsd1203]

Kelly (and others with GI suspect kids),

Not to make your life more complicated than it has to be, but thought I would pass along a related personal story just 'cause I hope it might help someone.

I was tested (biopsy) when I was 6 (some minor tummy troubles, really bad temper, never slept, etc. sound familiar?), and it was negative. So of course I and my family assumed I was out of the woods for good.

Until, that is, about 20 years later when I was finally so sick I couldn't see straight. I cried at absolutely everything, picked fights with my husband, couldn't remember anything I studied for school, thought life was horrible, had no energy, got hypoglycemic and super grumpy (and that's putting it politely) if I hadn't eaten in the last 5 minutes, etc, etc. Trouble is, in retrospect, these symptoms had probably been building for years (even with minimal GI trouble) but noone in my family, including me, really suspected celiac as the culprit, since I'd been negative before. Finally it sunk in that this might be ceilac anyway. A week into a gluten-free diet, I felt better. A few months into it, I literally feel like a new person, I am so much better able to function.

So, the moral of the story is... even if your kids test negative now, you don't have to watch them like a hawk, but please keep this somewhere in the back of your mind for the future.

Heather

[kyss]

Heather,

That is so familiar that you have no idea. My youngest is a volcano ready to explode at any moment. She is actually on an anti seizure medication which does help with the rages alittle but the hyperactivity is awful. She gets a "pink slip" from school at least 1 x a week. But then again I feel so tired and upset that I usually loose it..so much for parenting skills. My husband hides in his office most of the time because my oldest and I argue horribly and my youngest is just into everything all the time. I guess I don't blame him I would hide to if I could.

But I have decided that after my biopsy since I am the cook I get to put everyone on the diet except my husband, and then if he wants stuff he better hide it away.

I bet had I been tested younger I would have been negative too, until I hit 21 and was pregnant with my oldest child. I had a difficult pregnancy to begin with; but then 2wks before I had her I broke out in a rash on my legs, after having her I then had the rash over 85% of my body and since then I haven't felt "right". The rash was blamed on an iodine allergy, however 6months later I was diagnosed with hypothyroidism. I felt better after starting the synthroid, but I still didn't feel well. My sister had the dermatitis and a skin biopsy was done she has absolutely no GI symptoms however my mom and I have had symptoms for over 11 years, and we were told it was all in our head. But believe me, I am not doctor bashing, I work for my children's pediatric practice doing referrals and office manager, I have talked with them for the last several months about this and they explain this is a difficult thing to diagnose because so many symptoms are similar to other things. I think though that when my AB IGA came back so high they have educated themselves and admit that it is possible there are more celiacs in their practice. One doctor said she has to prepare herself to help treat my children because she knows very little about the disease. I thank her for trying though and giving it a second look at other patients.

Okay now I have rambled too much! I get going on this and I just don't know when to stop, my mom says I should write a book, only problem is it is neverending.hahaha I actually have a positive outlook on this because an answer has been found!

Thanks for letting me rambling....

Kelly

[seeking-wholeness]

Kelly, I seem to remember reading that if you have dermatitis herpetiformis, iodine will trigger a flare-up of the rash. Have you heard this?

[kyss]

Sarah,

I am in shock right now....I was just told it was erethyma multiformus, in other words an unexplained rash. What I do now is for almost 12 years I have avoided seafood and fish like the plague because of a possible reaction to any trace of iodine in the fish. I wonder if I can eat fish again? I had gone to an allergy doctor for skin tests one time and had a reaction to crab and shrimp, but not to lobster, for right now I still think I will avoid it.

I had no idea that iodine would cause a flare up of dermatitis herpetiformis. I should relay this to my sister and mother so they are aware of this. Thank you so much for the information...I seem to be getting more and more from this forum each day......I really appreciate it.

Thanks Again

Kelly

[Guest aramgard]

Kelly, Also only buy plain salt to cook with. I have had the dermatitis since childhood and am now 70 years old. Iodized salt also affects the dermatitis. I love all kinds of fish and shellfish, but break out in giant hives when I eat any of it, including trout. I was hoping that after being gluten free for awhile I could eat seafood but now I'm really kind of afraid to try, since the rashes are beginning to subside after 3 years gluten free. Hope this info helps. Shirley

[kyss]

Shirley,

Thank you for the information. I had stopped eating iodized salt because when I ate it my mouth would break out in the worst canker sores. I would then swish with salt (iodized) water and it would get worse. After I stopped using the iodized salt the canker sores aren't as severe. I still get them however, probably part of the celiac disease, my sister and youngest daughter get them too. You should see the hospital staff when I have to have any sort of betadine wash...they are in awe of the fact that I could be allergic to it....allergic or not...there won't be iodine, betadine or fish touching this body any time soon...

Kelly