[jsites]

Hi! New to the forum here. My husband was diagnosed about 2yrs ago with Celiac. Finally found relief after I cleared our house of gluten for the first time in over 30yrs. He had GI and other symptoms his entire life. We still struggle with finding things he likes to eat (he was a total snack cake type food addict before!) but he's getting better about it. Sadly, I still know more about it all then he does, but recently he's taken more of an initiative to educate himself. I guess the denial is wearing off. Hard to argue with feeling better!

My problem lies with my step-sons. They are both minors, but I have yet to be able to convince their mother to test them. They "don't have any GI problems". Ok, but one is skinny skinny like my husband was no matter how much he eats and honestly at 11, how many kids will really be honest about their bowel movements?? Especially b/c I think he's a bit scared of being cut off donuts and the like if he admits to anything now. He's watched everything his dad has had to cut out, so I'm wary that he's avoiding telling anything. He's had numerous times in his life that they have tried to pin him with ADD/ADHD, etc.

They have insurance, he eats plenty of wheat regularly and I've told them how easy the blood test is to start with. I think when he's here this summer, we're just going to get it done period. I'm just amazed at their reluctance to just go ahead and test. I know they don't understand the seriousness of it, they think of it more as an allergy. I guess I'll just keep working on it, but it's frustrating to say the least. Any thoughts on good ways to convince them of the seriousness?

We've already had our 2yo tested once early (neg for now) and will continue to monitor and test her as she grows.

[ravenwoodglass]

The answer as to how to test them is simple, have Dad take them in to the doctors and tell them of his diagnosis and that he wants them tested. It might even be possible for him to simply call the peds office and the doctor could call in a lab slip.
Now if they are positive then Mom would have to be gotten on board. Hopefully that wouldn't be too difficult.

[jsites]

I think that's what it going to come down to. We were hoping she would since they are mainly here on weekends (we live 3hrs away from them) and their PCP is up there. I'm ready to go out of pocket if we have to b/c I'm worried about the 11yo. He'll be here during the week in March I think, so we might try to schedule something then.

Ugh, I hope they are negative b/c getting her on board I think will be hard. We have a hard enough time over caffeine.

[ravenwoodglass]

jsites, on Jan 29 2009, 10:15 AM, said:

I think that's what it going to come down to. We were hoping she would since they are mainly here on weekends (we live 3hrs away from them) and their PCP is up there. I'm ready to go out of pocket if we have to b/c I'm worried about the 11yo. He'll be here during the week in March I think, so we might try to schedule something then.

Ugh, I hope they are negative b/c getting her on board I think will be hard. We have a hard enough time over caffeine.

Protecting the kids is the prime objective. If the tests are positive and she can not be easily brought on board by talking to the doctor then perhaps a mention of CPS might bring her around. If a child has a medical condition that a parent ignores that could be considered neglect or abuse.

[brigala]

I assume your husband still has parental rights since he has visitation and parenting time. If so, this is fairly simple.
He should have a copy of the kids' insurance cards, and he has the right to call their doctor and receive medical information. The pediatrician, if informed of his diagnosis, may order a blood test based entirely on family history. My kids' doctor did this. Perhaps he can check the kids' school calendar, and pick some Friday when they have a school in-service day, go pick the kids up early for their weekend visit, and take them in for the blood draw before bringing them home.
Will their insurance cover non-emergency medical care when they're away from home? If so, waiting for this summer when they're with you for a longer period of time might be an option as well. If their home doctor will order the test, perhaps she can have the order sent to an in-network laboratory closer to your home. Then they don't necessarily need to see the doctor during visitation.

I do suggest trying to be understanding of the kids' Mom in this situation. The whole idea of a gluten-free diet is very scary to people, and the first reaction is often denial. It took me a year to talk my mom into getting tested, even though she had so many signs -- everything from 50 year suffering from IBS to unexplained neuropathy.

I don't think it makes sense to keep nagging Mom about it until or unless the kids get a positive diagnosis. At that point, you might need to be ready to politely offer to take over primary custody of the kids (temporarily or not) if she is too intimidated by the gluten-free diet to make it happen. I don't know how amicable their relationship is (I'm remarried with priors myself, so I know these things aren't always easy or even possible). But I hope that concern for the kids' welfare trumps any ongoing power struggles which might be affecting the situation.

Best of luck.

-Elizabeth

[jsites]

Thanks, Elizabeth. We get along pretty well, all things considered. I actually tend to talk with her husband a lot about the day to day stuff, we get along very easily since neither of us were involved initially!

I didn't mean to give the impression that she doesn't care or that I think she's being negligent. She's a good mom. It's been a huge learning curve for me and our household, so I can completely understand her not quite getting it. It's very easy to think, well, he doesn't have symptoms, it's an allergy type thing, he's fine. If it's taken me this long to really get my head around it (and I'm still learning!!), I don't expect her to spend nearly the same amount of time researching just b/c dad was diagnosed.

I plan on talking to her one more time since I've read more about how kids can be asymptomatic, yet still have Celiac and see if she won't go ahead and schedule it up there. We do have a copy of his card, etc. We've never actually had to try to use it for normal type dr visits while he was here though, so I'm not 100% on their network stuff, it's through his step-dad's company. I may approach her with an offer to get it done over spring break while he's here and just ask about in-network, etc stuff.

Again, she just doesn't know and I understand that. I think if he was diagnosed, she would take it serious enough, I just know we'd be endlessly worried about CC and such while he's there. But we all have to learn, right? I've really appreciated some of the NIH and other websites I found on this forum and it will help I think.

[happygirl]

"Husband's doctor just informed him that due to the heriditary nature of his condition, all first degree relatives must be tested for it."

http://www.celiacdis...nts/A02-FAQ.htm

"Q: Why do my family members need to be screened for celiac disease?

When the diagnosis is established in one family member, their first- degree relatives (parents, siblings and children) should have blood tests for celiac disease. This is because at least 10% of family members will have the disease, even if they are asymptomatic. Screening is also recommended for second-degree relatives (grandparents, grandchildren, aunts, uncles and cousins) as they are also at an increased risk for celiac disease. Family members who already have an autoimmune disease are at a greatly increased risk to have celiac disease (25%). "


http://www.celiacdisease.net/testing