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ravenwoodglass

Daughter In Denial

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My 19 yr old daughter was diagnosed by blood test and endo about 2 years ago. She went to college last year and came home for X-mas only. She is doing an internship over the summer but her Dad and brother went to see her a couple months ago. She has not been very communicative for a while and I found out from her brother that she has gone off her diet. Some brainiac she knows at Harvard has told her she could not possibly have celiac disease. What a jerk. Anyway, she has a history of withdrawing when she feels guilty about something and thinks I don't approve. I don't want her off her diet but it is her body and I am not angry but her brother promised he wouldn't tell so I can't just call and say hey I know whats going on and I love you anyway. I feel bad enough for not only giving both my kids gluten intolerance but also for not nagging the doctors enough about it so they found out sooner. Any ideas on how I can broach the subject without letting her know he told?


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Wow...thats a tough one. Why would someone tell her she doesn't have celiac disease...why would she listen??? Does she not get symptoms from consuming gluten? Isn't there a way you could just bring up the diet in conversation...like just asking her how things are going? Would she not be honest with you if you were to just bring it up without telling her you *know*? Is your son also gluten-free? Maybe he could be the one to talk to her about the diet since she already told him she went off it.


Rachel

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In my opinion it needs to be brought up. It is serious for someone with celiac not following the diet. Does she know the risks involved? Some smart guy that person was who told her she didn't have it with medical evidence staring you in the face saying the opposite.

Could you have maybe your son talk to her? Or maybe print out some stuff on not following the diet and have him send them to her?

She really needs to know the dangers and then if she chooses to make that same decision it is her life and body but she will later regret it in life.


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

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Does she not get symptoms from consuming gluten? Isn't there a way you could just bring up the diet in conversation...like just asking her how things are going?

<{POST_SNAPBACK}>

She told her brother that her ulcer and depression and anxiety are all from stress and they always were. When the endo was done the doctor told her she was 'a little bit celiac', to me that's a bit like hearing your a little pregnant. I have asked her why she doesn't order from Ener-g anymore and she told me she could find stuff in Boston. (Never thought my little girl would lie to me so bold faced and that may be the problem in itself. Can we say guilt here) I have tried to get her dad to 'slip' so I can blame knowing on him but wouldn't you know it for once the man is keeping a confidence. I tell him something in confidence and I hear it all over town in a week but for this..... I think I will try to take Kaiti advice and have my son (he is celiac also) send her some printouts, although she is premed so it isn't like she doesn't know this stuff, can we scream denial here. I'm really concerned this will impact her grades as well as her well being. She was a cutter and almost committed suicide as a side effect of antidepressants. I'm thinking of showing up at her door with dog and gluten-free bread and cookies, she never could lie to my face, the reason she won't visit home si becoming more obvious. It's odd because even at my sickest I was not a punitive mom, perhaps I shouldhave been. Thanks for trying to help. I appretiate it more than you could know.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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She's not being honest with you, but you're not being honest either. Trying to manipulate a situation where you can appear to 'find out' she's not on her medically necessary diet is also dishonest. So you know she's not on the diet. Who cares how you found out. Tell her you know, tell her who told. Isn't the fact that she's harming herself trumping all the other issues? There are all sorts of "lies" in this world... lies, white lies, lies of omission... but honesty is simple and straightforward. No one improves upon honesty. It is what it is. Your problems boil down to dishonest communications within the family. She may tell you she's going to eat gluten and that's that. FINE. Allow her to be honest with you. You can tell her you don't approve of that choice. FINE. You be honest with her. But you can still love and support one another even if you're all making choices that concern one another. Just live with honest communication.


I believe in God.

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Sweetheart, you have a few issues to deal with. First of all, you said, "I feel bad enough for not only giving both my kids gluten intolerance but also for not nagging the doctors enough about it so they found out sooner." That's rubbish. It's not like you went to the disease store and picked Celiac Sprue as a birthday present. You had no choice in the matter. So get rid of that misplaced guilt, and worry about the things you can change.

Your daughter is obviously smart enough to know better. It seems that she might have other emotional issues with you so severe she's willing to compromise her health to get your attention. Find out what these problems are and deal with them. Her falling off the diet is a symptom of a larger problem, and it sounds like you have a lot of listening and discussing ahead of you. Don't focus on the gluten; she's using that to have power over you. Focus on her life and how it's going. Perhaps she has boyfriend problems or school problems. Let her talk to you about that instead of hounding her about her diet. Maybe then, she'll come around to your point of view.

Off my soapbox now. Hope I helped.

Kate


Kate from Philly...always seeking new restaurants...someday I'll be well again.

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First thanks everybody for your replies and advice. I was suffering from a 'whoops, gluten got ya' depression all weekend which I must admit makes me a bit overemotional. Anyway you are right that this needs to be discussed. I spoke with my ex and asked him why everyone has been hiding this from me and he said he felt she should tell me. With me being the one in the family who has studied the most about this 'disease' I think she knows I won't approve. And of course Mom's approval is important to her. If she avoids me she avoids having to tell me. The biggest issue isn't that she is lying but that she is avoiding talking about it. I don't want to break her brothers confidence but it needs to be done. Turns out she paid herself to go to some doctor in Boston for tests who said she definately was not celiac. Of course shes been gluten-free for over 2 years and I doubt she sent for her blood and endoscopy results from here. As we all know there are lots of false negatives but no false positives, especially where a biopsy is concerned. Now that I know what is behind her withdrawl I should be able to talk to her about it. She did this once before when she started dating 6 mos before she turned 16. She tortured herself for months over hiding it and later found out I would not have disapproved anyway. She seems to be doing the same thing here. Well thanks again everyone for your input. I'll talk to her this afternoon and we'll ge this out in the open. I guess all I can do is encourage her to go back on her diet and respect her wishes if she chooses not to.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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