He's Using The Regular Toaster For Her Bread! (vent -- Long!)

[Sailing Girl]

I'm about to blow my stack.

Some background: My ex and I have been separated/then divorced for almost five years. We split, in part, because I recognized DD's issues with gluten and he ridiculed me for suspecting them and implementing a Gluten-free Casein-free diet over his protests. In the early days, he also deliberately sabotaged the diet (that's a *very* short version of what is a very long story!).

I have custody of DD (now eight) for about 60% of her time, and he has her for about 40%.

DD does not have an official diagnosis. Her developmental pediatrician diagnosed her as "severely gluten sensitive/probable Celiac" based on dietary response (she was blood tested for Celiac when she had been gluten free for well more than a year and of course came up negative).

When she was very young, her symptoms mimicked autism and severe developmental delay; now, she's added migraines, stomach aches and horrible constipation to some very diminished behavioral symptoms when she gets glutened. She's fine otherwise -- no remaining developmental issues, and she's no longer on the autism spectrum.

My ex has been forced by our court agreement to keep her gluten-free, but he has resented the entire issue and does not buy into it, despite the diagnosis from the pediatrician.

In the past few months, I've suspected some serious cross contamination going on at his house -- DD has been returning home with intermittent stomach aches and a horribly distended stomach. She's also had some behavioral issues -- she's been whiny and has thrown a couple of two-year-old style tantrums. I also noticed that her growth curve has flattened out in the past few months (not long enough to draw any conclusions, but another data point). And, she's started to reverse pronouns again (he for she and vice versa) -- an autistic symptom that she lost two years ago.

So this morning, I spoke to DD on the phone before school, and she mentioned eating a bagel for breakfast that her father had fixed for her. A lightbulb went on in my head, and I asked her if she had her own toaster at his house. "No, Mommy, but he cleans it really well before he toasts my bagel."

AAAUURGH.

The infuriating thing is, he's had plenty of time and opportunity to research Celiac and how to handle it. He just doesn't want to bother, not because he doesn't care about DD, but because he's lazy, he doesn't *really* buy into the diagnosis -- and he wants to get back at me.

I also suspect it's not just the toaster, since I think the bagels are a new development (the local grocery just started carrying them). Eighty percent of his own diet is gluten-based, and his house scares me -- he's a horrible housekeeper, and I've seen crumbs on his floor often.

I sent him an email this morning quoting the Boston Children's Hospital website about the need for a new toaster. But I don't know how to address the other CC issues since I don't know exactly what they are -- only that they must exist, because DD is having symptoms.

This is mainly a vent (the folks on this forum understand better than anyone the issues we face!). But does anyone have any advice for me? Something that will make this guy see the light? I'm at my wits' end, trying to keep my daughter safe when she's not with me.

[sandejosgirl]

I'm really sorry, that's hard.

If I was in your situation I would document everything. I would be keeping a journal of every symptom and the correlation between visits to your ex's house. I would write down with those your own daughter's words, if she'll offer them, about what she is eating. I would probably also be talking with my lawyer about what is necessary for grounds to prove non-compliance with treatment for a medical condition.

Poisoning your own child is unacceptable to me! If she had diabetes and he didn't give her meds that would be considered child abuse. I'm mad for you! I would consider having her blood work done again if the gluten ingestion has cont. for a while. If it comes back pos. it might be time to try for a firm diagnosis so as to have some sort of grounds for demanding compliance with treatment for her condition.

Maybe you could write a letter and include again a copy of the Drs diagnosis. I'm so sorry about your situation, we're doing a gluten-challenge here in order to get a firm diagn. cause we now have another auto-immune disorder in the mix and want to "prove" it was cause by celiacs. So my son (3), the most emotionally/behavior affected by gluten was up screaming for the second night in a row and threw tantrums over dropping a raisen yesterday. Sucking in our household too, we are having a hard time with having to poison them deliberately!!

Hope this was helpful, Stephanie

[lizard00]

As the other poster said, keep a journal, and remind him that LEGALLY, he is bound to keep her gluten free, whether he agrees with it or not. As a parent, he is not giving his daughter's health due dilligence because he's making unwise and harmful decisions. (I'm a little worked up over this one, too!) If he doesn't want to comply, threaten to take him back to court to revisit the custody arrangement, since he can't seem to follow it.

[Sailing Girl]

Thanks, Stephanie. I've been documenting everything, and even called a meeting with her father about 18 months ago to discuss diet specifically. Things improved for about a year after the meeting (DD's migraines and stomach aches disappeared). So I'm incredibly frustrated (although not surprised) that it's getting worse again.

He doesn't believe he's poisoning her. It's just that he's oblivious to her symptoms (always has been), or, if he notices them, blames the symptoms on something else (stomach flu, for example).

DD is an excellent guardian of her own diet, and is extremely careful at school. But while she can read labels with the best of us, she can't cook her own food yet, and so at his house is at the mercy of whatever pan, collander, toaster etc. he chooses to use -- not to mention the crumbs lying on every surface.

And her symptoms (like so many of us) don't crop up immediately, so it's hard to relate them to a specific food or meal. And they tend towards the neuro (migraines and behavior) with mild gastro symptoms.

All I know is, the CC isn't coming from my completely gluten-free house -- if it was, I'd be sick too!

I've kept good records of her symptoms, but in the course of my divorce, realized that wasn't enough. I spent probably $20,000 to $25,000 (I'm still paying for it) in an attempt to find a lawyer who could win me full custody on the basis of DD's health. I eventually had to give up because the judges around here wouldn't give me full custody. DD's symptoms are just too vague, and she doesn't even have the official diagnosis.

I may try for an official diagnosis, but I think the odds of getting one now are slim to none. Good luck with your attempt -- I really hope it pays off!

[celiac-mommy]

  lizard00 said:

As the other poster said, keep a journal, and remind him that LEGALLY, he is bound to keep her gluten free, whether he agrees with it or not. As a parent, he is not giving his daughter's health due dilligence because he's making unwise and harmful decisions. (I'm a little worked up over this one, too!) If he doesn't want to comply, threaten to take him back to court to revisit the custody arrangement, since he can't seem to follow it.

I agree with this!!! There is no excuse on his part, realistically, she is not safe in his home. Intentionally poisoning his dd---I can't even fathom this

[dandelionmom]

Maybe you can start teaching her some basic cleaning and cooking skills so she can make her own meals? We've been doing this with our 5 y/o. I want her to grow up knowing how to make herself safe food.

I'm so sorry you're going through this. I'm angry for you!

[ang1e0251]

Just please be gentle questioning your daughter about her father's house. It would make her feel terrible if she thought she was "tattling" on him. Or if he threw it in her face that he got "in trouble" because of her. Sounds like he would do that.

Is there any way you can make a meeting about her diet and symptoms, maybe with a mediator, an annual thing? He responded well the last time. Maybe he's one of those who needs periodic reminders from a third party.

I can say for my brother, he saw nothing wrong with his treatment of his daughter. Her mother's complaints fell on deaf ears and he stopped coming to me with complaints about her when I said she was right. He liked to stay up all night and sleep all day. He thought taking her off her schedule was being a "fun" dad. Still his dd worshiped him and we avoided critisizing him in her presence. She's a dear and he's just a putz.

[Sailing Girl]

Thank you all for your kind thoughts.

It's horrible when you realize something is harming your child and you're basically powerless to do anything about it. And that's the situation I've been in -- on and off -- since DD's father and I split.

I may try meeting with him again, and I may point out that he's hurting her, which he will deny.

The meeting 18 months ago got rid of the obvious sources of CC, such as the teflon pan he used for gluten French toast and then gluten-free pancakes, without bothering to wash it in between (I can sense you all cringing at that!).

And I expect to get rid of the gluten toaster (or at least get him to get her one of her own).

But I'll never be able to change his horrible housekeeping, which means there always will be crumbs everywhere. And I'll never persuade him to stop making her, say, Amy's Mac & Cheese, even if I know she reacts -- it says "Gluten Free" right on the box, so he'll never take my word for the fact that it's not okay.

DD is getting so she doesn't like to go to his place -- in part because she realizes she gets sick there. But I'm just not sure what else I can do.

[shayesmom]

  Sailing Girl said:

DD is getting so she doesn't like to go to his place -- in part because she realizes she gets sick there. But I'm just not sure what else I can do.

If it's possible that he is just "lax" because that's his nature, then I would suspect your best ally here would be your dd. Perhaps if she were to tell him that he needs to be more careful and that she tell him she feels sick after each time being there....he may be motivated to get his act together and take it more seriously. Having his child tell him that he's making her sick may tarnish the "fun" image he is trying to establish. Reality checks are necessary in life.

Your dd can also make him aware that he is not to use the same toaster, no matter how well he "cleans" it. These things apply no matter whose house she is at....all differences aside. She needs to know this for herself. From there, she can relay the information accordingly. I suspect that if your dd brings these things up to her dad on her own...then he will be more apt to respond in a more permanent fashion.

You may still have to call in a third party to fully address this. But it never hurts to teach your dd how to live safely and how to be assertive addressing things that are borderline when it comes to her health. She may need some reassurance that these requests won't be met with indifference or that this won't affect how her family members or friends feel about her. Encouraging her to be assertive now will not only help build confidence....it will also help her to develop healthy and meaningful relationships throughout her entire life. It's a lot easier to address these issues individually, as they come up than to put them off and have a big blowout with lots of pent-up resentment later.

That being said....my dd is now 5. Dh and I are married and he is much more prone to messing up the diet than I would be (despite a gluten-free home). Dd straightens him out when these things come up by asking a ton of questions and telling him to go brush his teeth before giving her any kisses, and to wash his hands before playing with her and/or her toys. It's become routine now and she rarely has to remind him any more. Our last "frontier" is to get him to either not eat gluten in the family car or to wipe the steering wheel down immediately afterwards if he does. It's simply amazing how much one little girl can get accomplished in a relatively short amount of time.

[Sailing Girl]

My best ally IS my DD -- she really knows her stuff when it comes to gluten free. She, too, forces her father to brush his teeth before giving her any kisses! But she didn't know about the toaster -- we don't have one at home, and never use them elsewhere, so it's a new thing to her. I'll talk to her about it when she gets home tomorrow.

Poor kid. She's super sensitive (just like me). Gluten makes her spacey and hyper, and then clingy and whiny. The reaction takes four or five days to work through. When she's spacey and hyper (the first day/day-and-a-half after gluten ingestion), it's almost as if she's high on something (she is), and she can't focus on keeping her food safe (or on schoolwork, or on much of anything). Clingy and whiny comes next (along with possible migraines and horrible constipation), and by the fourth or fifth day, she'll be normal.

I spoke with her this morning again before school, and she's definitely in the spacey and hyper stage of a glutening -- which means she'll be horribly whiny and may get a migraine after she comes home tomorrow. Hopefully she'll have worked through it by Monday (fun weekend in store for sure!).

I'm thinking I may call another meeting with my ex to talk about all of this. He's horrible to deal with, but I need to get my back up and just do it.

[buffettbride]

Perhaps in addition to documenting the problems as they accumulate (I'm assuming to pursue further legal action) you could buy him a dedicated toaster in the meantime?

[*lee-lee*]

  Quote

she was blood tested for Celiac when she had been gluten free for well more than a year and of course came up negative

have you tested her again, since you've started to suspect she's getting glutened while at her dad's house? you might get a positive result this time and that may help your case with the courts and with your ex.