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Ursa Major

So Frustrated With My Daugher!

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Our second-oldest daughter and her family were visiting for the weekend, bringing our youngest daughter (who now lives with them for various reasons) home, because Susie and I were participating in a recital (Susie takes voice- and I recorder lessons).

My daughter has tested wheat intolerant at some point (I am sure she is not just wheat, but gluten intolerant), but has never taken it seriously and cheats all the time. The same goes for her sugar intolerance.

Her mother-in-law has biopsy confirmed celiac disease, as does her brother. My son-in-law is very short and scrawny in comparison to his brother, who towers over him and is large (muscular). My guess is that he has celiac disease just like his mother and uncle.

His mother will cheat whenever she feels like it and 'deal with the consequences'. She doesn't see any problem with that. I've tried telling her a couple of times (in e-mails) of the dangers of doing that, but she ignores those e-mails and refuses to even answer.

So, with celiac disease coming from both sides, it is almost a given that all their kids would be gluten intolerant. My daughter refused to listen to me, and didn't tell me for months that their older daughter NEVER had a solid bowel movement after starting solids until she was 15 months old. She'd have five or six total blowouts a day, coming out of her diaper on all sides, it came out with such force.

Finally the other grandmother told my daughter that she thought Zoey might have celiac disease. So, she was tested, and tested intolerant to all gluten grains, as well as all dairy (she was tested only because I offered to pay for it, because I can't stand it when people will let kids suffer).

I also paid for having the baby tested. She is also intolerant to dairy, corn and some other things.

My daughter went totally gluten-free with her kids, and told me that she felt so much better. That was a couple of months ago. I was convinced that she meant it, and would be gluten-free now. And felt that my youngest daughter, who is gluten intolerant as well, would be safe living with her.

Guess again. I am so mad and frustrated! Today they came to church with us. It was pizza lunch at church. My daughter packed a lunch for Zoey to take. I said, "aren't you taking anything for yourself, too?" And she told me she was going to eat pizza.

When I asked her why she was eating pizza, she just said, "Because I like pizza!" I mentioned to her that she was gluten intolerant, and she said "so? That's none of your business!"

I asked her when was the last time she ate gluten, and with this sneer on her face she said, "Two days ago I ate a big juicy burger at McDonald's, with the bun, and it was GOOD!" I could have slapped her. She is 26 years old, acting like an immature jerk.

Well, then there we were after church, and she ate at least three pieces of pizza. Her husband was holding Zoey on his lap (I was entertaining the baby, so my daughter could eat), feeding her my gluten-free, dairy free potato salad, while at the same time he was eating his own pizza! And not only that, he took some salami off the pizza, offering it to Zoey.

I just about had a fit! I told him that what he was doing was NOT safe for Zoey. He just laughed. I had to walk away, or I think I would have yelled at them.

So, after coming home, Zoey had a temper tantrum when she had to have her diaper changed. Her dad had to hold her down so her mom could change her, she was thrashing so hard, screaming at the top of her lungs. That is how she reacts to gluten, she used to have fits like that several times a day before she was gluten-free. Of course her dad glutened her at church!

Later my daughter says, 'Man, I have such awful gas today, I wonder why!" I could have told her, but refrained, because we would have ended up having a huge argument, and I am always blamed for those by everybody.

Now I am not so convinced any more that my youngest daughter is safe with her sister! Plus, I am upset to know how lax they are when it comes to being gluten-free. They both laugh at me at the mention of cc, they don't believe it is real. They think I am crazy and paranoid.

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I felt like both crying and slapping them when I read your post. I don't have any solutions for you, I sure do wish I did. All I can offer is ((((((((((((HUGS))))))))))) and prayers that they wake up soon.

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Ursa, I feel for you, I understand totally how you feel. Our kids are one thing, especially when they are adults, we can't make them take care of themselves. When we see them abusing their children, our grandchildren, it breaks our hearts. Feeding gluten to a gluten free child is abuse, in my eyes. I have 7 grandchildren, and one on the way, I understand, totally. My youngest grandson has asthma and his mother does not understand why she shouldn't smoke around him. That poor little guy was so abused by her the 9 months he was being carried by her, it's amazing he was even born, the first 9 months of his life were torture for him--I understand totally. It's so frustrating. I have no words of encouragement, but here's a hug! :(

Deb

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I have the same problem in reverse. My father won't go gluten free just gluten light and he still complains about problems caused by gluten. I told him he was free to kill himself with his food if he wanted but he wasn't free to talk to me about his health issues any more. He is still looking for the doctor that will tell him he has X disease and will give him Y medication to solve it.

You can lead a horse to water but you can't make it drink.

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Families are hard. Mine won't even be tested even though many of them have very classic symptoms. Sorry you're going through this. It is so hard having loved ones who think you're crazy and paranoid when you're just trying to be helpful. :(

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Oh the joys of motherhood . .. if only they would listen to you like we do!!

Hang in there! It reminds me of things i've seen posted by parents of very difficult kids, kids with sensory problems or autism or just really stubborn, high needs kids - all their freinds and relatives give 'advice' about how they should punish them more, or just look at them like they are crazy. . . and then that same person's second or third child is a difficult kid, and they come asking for advice . .. your kids know that you know, and eventually your grandkids will know that you know, and if and when they are ready, they might come back for advice ... but yeah, for now you'll have to find a way to accept them where they are . ..

I live in different state from all my family and my oldest, 15, is in a hurry to continue that tradition . . . . at least it keeps us out of each others hair

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How frustrating--I really feel for how difficult this is for you. I have a similar thing going on in my family (sister) and I have decided to never say another word about it becuse I'm just plain tired of beating my head against a stone wall.

Of course, I'm dealing with "adults" and you are trying to protect a child, so I can understand that you don't feel you can just drop it.

Sending a big warm hug, and good thoughts as you try and walk the tightrope between trying to keep the peace and doing what you feel you need to do for the baby.

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I'm sorry you have to see them make those decisions. As much as we have every right to chose to be healthy as stay gluten free without people unwantedly badgering us to eat wheat, they have the right to be not healthy and not be gluten free without people unwantedly badgering them to avoid wheat. I can't imagine, however, how hard that is to do with your own children - to watch them hurt themselves. **hugs**

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Wow, Ursa, I am very sorry to hear this, There are so many things happening in your life right now too, with the birth of the new baby and all.

I will keep you guys in my prayers and hopefully you can get through to them....I hate when people do no understand the full extremes of celiac.

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Ursa,

I know how you feel. I've been beating my head against the wall with my family. My dad shows all the signs of a food intolerance, but wasn't changing his diet. Before I started spamming my father with celiac horror stories he told me he only had "one bite" of a bisquit. I laugh just typing that.

I told him this is not the Atkins diet, where you can just cheat when you want to with a bite here and there. So between my nagging and my mom's, and his own good sense, he's seen the light and is trying to actually do the gluten free thing for real.

My sister is another story. She was Texas Children's Hospital's youngest ulcer patient at the age of 18 months. She was hospitalized for over a month and lost down to 16 lbs. They blamed it on the birth of my brother, that she must really have been jealous of him...I know lots of jealous kids who never develop ulcers!

Anyway, she went on to develop Type I diabetes, Graves disease, recurrent bladder and yeast infections that never really go away, and dry, itchy skin on the scalp that never goes away. Oh, and since they cut her Vegas nerve in her stomach she doesn't produce large amounts of stomach acid, but often vomits and feels sick, which she blames on high blood sugar.

You tell me, just from the symptoms, what is that?!!

I am a Celiac and have family on both sides who have autoimmune diseases. We likely got it from both parents. She refuses to be tested because "she doesn't have IBS symptoms."

Her poor son (and occasionally her daughter) has frequent stomach and head aches after eating, and she thinks he's trying to get out of school. Never mind that they live on pasta.

So here's the kicker: She took him to the doctor for the stomach aches Friday, knowing I'd been diagnosed and this runs in the family, and the doctor GAVE HIM ZANTAC. I'm so torqued up over this I could scream!!

I said,"Why didn't you have him tested for Celiac?" She said she has a lot of personal problems right now, and she doesn't want to add to their stress by having to put them all on a special diet.

AAAGH. Let me tell you, De nial is not just a river in Egypt.

There are none so blind as those that won't see.

And yes, she did get mad at me for being "pushy" about getting her and the kids tested. She has no idea how hard I've been biting my tongue to keep from getting upset with her about it. I figure if I get mad I alienate her and lose my influence and she'll never listen anymore, so I just try to be tactful and do what I can.

It's maddening, and if you didn't care, it wouldn't get to you so much...

Just keep on being patient and loving and telling them what they need to hear with out pushing them away. Maybe one day they'll listen.

I wish you the best.

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Ursa,

Yikes- that's very hard. I have no good advice. But, working with emotionally disturbed kids every day for seven years has taught me you can't save anyone but yourself. Sometimes that example translates to the rescue of someone watching. Some need to fall hard before they can crawl back up and change. Our kids are the most diffficult to watch fail... I imagine young, innocent grandchildren worse.

I have often wanted to kidnap a teen I'm working with and run away to

Canada or somewhere to save them from themselves or their families or their crazy lives but I've learned I can't; they have to get through their own pain and find their way...

Know you have tried and when opportunity presents itself, you'll try again...

lisa

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I feel your frustration. I have celiac genes on both sides of my family and am the only diagnosed celiac so far. I have aunts, uncles and cousins who've been diagnosed with diabetes, fibromyalgia, intestinal lymphoma, autism, colon cancer, esohageal cancer, pernicious anemia, anxiety, depression and multiple sclerosis. My mother has been severly anemic all of her life and I'm fairy certain undiagnosed celiac disease killed my father. My neice and nephew are at the absolute bottom of the weight/height charts for their age and my nephew has noticable behavioral issues yet my brother finds it necessary to make little comments about my food and diet every chance he gets but then can't figure out why he has massive heartburn and digestive issues...

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Oh Ursa, I feel for you, I have been where you are - heck I am still there, but I have distanced myself somewhat. I know that my family are going to continue to eat gluten, dairy & sugar all the while suffering the effects, yes just because they can. I spent 4 years buying supplies, outfitting their kitchens, sending books, but you know what I have given up. I really no longer can feel responsible for their irresponsible ways. They will reap the suffering for their little freedoms & the suffering as you & I know will be far greater than any pleasure from eating a pizza when it is convenient.

they are young & they think they are invincible, but they have never seen a baby die from dehydration within an hour, or seen their friends die of cancer and other auto immune illnesses. wait till they are so sick that they are not sure they are going to live or die. I remember many of those days & I know you do to, but they do not... The really awful thing is that I know that this gluten problem is causing more problems at a younger age in each succeeding generation. I find it scarry, but there again I have tried to tell them, but to no avail.

I suggest that when the granddaughter is throwing a fit with the parents that you immediately leave the house & go for a walk or a drive. spend your eneregies on yourself & give yourself some extras, your chhildren have the information & will have to make their own decisions.

I am also one of the ones that do not mention it to my family anymore. But I still find the occasional total stranger that is very grateful to get the information about gluten and gluten intolerance. Maybe one day one of your kids will get the word from a stranger...

I would just spend a little less time with them & then only in controlled situations where the rules about food are agreed upon ahead of time. I would totally get out of the power struggle that you want them to be gluten free. They are not showing you any respect & they are flaunting it in your face, that is what I would get out in the open with them. I would write a letter asking for what you want for yourself, and how you want them to act when they visit you. I would save that letter for two weeks, till I was calmer, then I would edit & send it off. No grandmother wants to see their grandchild suffer & I do not think that you should have to. What they do at home is their business & I would make sure that you let them know that... It is hard but you really have to come to that point...

remember gluten is more addictive than heroin, so slim chance they are actually going to give it up.

Ursa, I really know how bad you feel, these are just some things that I tell myself all the time, when I think of my grandchildren & the harm that is being done to them, I worry that my 9YO gd that just lost all the enamel on her teeth already might have osteo... & her older brother that is 12 & tiny... & that their chances of getting leukemia, diabetes, other auto immune illnesses and cancers are huge, really huge...

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Ursa:

I have known you through this board for so long and know what a caring mom and grandma you are. And you are a loving person as well. I feel for you and my prayer today is that the Holy Spirit comes to your daughter to impart some wisdom and maturity in her life and that the Spirit also grants you comfort and patience on this hot topic. I also will pray that your tongue heals -- after having to bite it so much for fear of what you might say to your "kids." <_<

Deb

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Thanks, everybody. One consolation is, that my oldest daughter finally understands about cc! I told her what her sister does, and asked her if she believes in cc. And she said, "When J... comes home from work and has eaten gluten, he has to go and brush his teeth and rinse his mouth before he is allowed to kiss me.......... does that answer your question?"

I hope that she will get through to her younger sister (by 15 months) at some point, when she is ready to listen, even if she won't listen to me.

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