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ravenwoodglass

I Feel Helpless

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My beautiful DD got home for the holidays yesterday. I was sooooo happy to see her. She has been off her diet since a year or so after she got to college when she went to a big wig doctor after being gluten-free for 2 years to get scoped and have her genes done. Of course since she was healed and we don't carry one of the 2 recognized celiac genes the doctor told her the original endo was wrong. And of course she is off her diet. My DS sees her more often than I do and she is now convinced that all her symptoms are from 'stress'. I am hoping the shock on my face was not too obvious yesterday. Her face is covered with DH lesions. I felt like crying. I want to tell her to at least get some Dapsone but am afraid to even mention it. When I tried to talk to her after she finally told me she was off the diet she was very resistant to even listening and pushing about it just makes her more determined to do exactly the opposite. She is a med student and one of those real smart young adults that haven't learned yet that they don't know everything. I love her and hate to think of her laying shaking in pain on the bathroom floor and thinking it is all nerves (someplace I found her all too often prediagnosis). It is just so frustrating. I know there is no easy solution and that the last person some young folks will listen to is Mom. I guess I just needed to vent but if anyone has any ideas I would welcome them. Thanks for listening.

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Oh Raven, sorry to hear that. Sometimes, people have to hit bottom before listening. We have a similar situation in our family (not celiac related) and it took my sister till she hit the bottom before she listened to our advice.

How old is your DD? How often do you get to see her and how long with she be staying with you? Will she eat any gluten-free meals while being with you?

I know this is hard and watching your child suffer is hard...I am not a parent yet so my advice may not be too good. I would just put it aside and enjoy the holidays, you wouldn't want to be miserble through the next few days. See if you could get her alone and let her know how worried you are about her...hope this helps a little.

Amanda

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I'm not really sure what advice to give you. I think it is probably best not to try to convince her that she does have celiac at this point, especially since she is so resistant to hearing anything about it. Sometimes the harder you try to make a point, the more determined a young adult will become.

Since she is in the medical field, is there some way to mention that the 2 recognized celiac genes may not be the only celiac genes. Research is going on all the time and new discoveries are made in these areas. Maybe if you can say things in a non-judgemental way and pave the way for her to think things through on her own, she will eventually come to the right conclusion. But if you see any sign of resistance, it wouldn't help to press on with the issue. Maybe you could just ask her some questions about how things are going, without giving any advice or making any suggestions. Make her verbalize how she is feeling and what she is doing to alleviate the stress. Don't expect immediate results, she won't change her mind on this overnight.

Your in a tough situation. Being a mother I know how you must want to shake her and tell her to start back up on the diet. But if she is as stubborn as it sounds, that would only cause her to dismiss the idea even more.

Hope things go well and you can get some peace of mind by being with her over the holidays.

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I'm not really sure what advice to give you. I think it is probably best not to try to convince her that she does have celiac at this point, especially since she is so resistant to hearing anything about it. Sometimes the harder you try to make a point, the more determined a young adult will become.

I think Joni said it best in her post. Young adults are stubborn....I used to be one :)

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I agree, you know the drama that i have been threw with my step-son. I finally gave up on trying to get him to stop eating gluten, well since i did that he has done so much better. If there is gluten and non gluten food in the house he will go for the non-gluten stuff 99 percent of the time. I know if i was still hounding him, he would go for the gluten stuff to piss me off.

Just try to enjoy your time with her, and maybe just drop subtle hits, and try to having notihng in the house with gluten then point to her how good she looks when she is not eating gluten.

paula

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I have a 20 year old DD, and if it were my daughter, I would say something to her about the DH on her face. She's already seen the look on your face and she knows that you saw it. I'm one of those people who can't tell a lie though, so my face speaks volumns.

You know, even if it is stress, letting the skin on her face get damaged from lesions isn't good for her. If Dapsone gets rid of it, then she has her answer.

And if it is stress, she needs to find an outlet for it. Med school is tough, but being a doctor is going to be worse.

I wouldn't harp on it. They hear us even when they don't want to ... Just my 2 cts.

Marcia

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Thanks all. Your right on the stubborness issue. She got it from me. :) I know that I can't even bring it up while she is home. That would ruin the whole holiday. She can't get anything with gluten here, I won't allow it through the door, but there are lots of dinners out with family. She can only stay a couple days so I really don't want to make waves and know that I need to wait until she is back at school to even think about bringing it up. I may try to talk to her about it after she goes back or even see if her brother can get through to her. I wish I had more pictures of me with my DH lesions to put up around the house, right beside mirrors but I kind of avoided the camera back then. She is incredibly smart so I am hoping she will come around soon. Perhaps when she gets farther from the rebelious teen years.

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Well from a person with dh lesions on her face. My mom harped on me a very long time to figure out what it was and i was scared to ever find out. the more she harped the more i turned her out. Now we are both happy that we know what they are from, even tho she thinks they should go away after a short time gluten free. But she relizes they start to go away then i gluten myself and they come back, so she tried to support me 100 percent on being gluten free now. I cant use dapsone cause im severly anemic, but will be starting iron shots after the first of the yr, so hopefully then i can start to use dapsone.

I would have a good time with your dtr, but write her a letter and give it to her when she leaves or mail it to her so she will get it when she gets back. I wouldnt want your holiday to be ruined. I know when my mom would say stuff on her visits it would ruin the rest of the visit.

paula

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I think you've gotten great advice, and know what you need to do, though it must be incredibly hard to do it.

So I can do is say *hugs* and send my best wishes that she gets through this phase quickly, and that you two come out of it together, smiling, soon.

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Good advice about mailing her a letter. I finally (along with his now wife) talked my son into getting tested. All his tests were negative but I truly believe he is gluten intolerant, and so does she. However, he will not eat gluten free since nothing came back positive. and yes, I've told him his body will be damaged once it actually becomes celiac but he is in denial.

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Feel free to tell her about me, because I don't have the 2 main genes either, but I'm definitely a celiac. Maybe knowing about someone else who is like her will help to convince her that celiac disease is not limited to 2 genes. Also, one would think that she would want to do something about the lesions on her face, and considering she's a med student, she has to know that there's a good chance it's DH. Anyway good luck! Take care,

-Brian

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My beautiful DD got home for the holidays yesterday. I was sooooo happy to see her. She has been off her diet since a year or so after she got to college when she went to a big wig doctor after being gluten-free for 2 years to get scoped and have her genes done. Of course since she was healed and we don't carry one of the 2 recognized celiac genes the doctor told her the original endo was wrong. And of course she is off her diet. My DS sees her more often than I do and she is now convinced that all her symptoms are from 'stress'. I am hoping the shock on my face was not too obvious yesterday. Her face is covered with DH lesions. I felt like crying. I want to tell her to at least get some Dapsone but am afraid to even mention it. When I tried to talk to her after she finally told me she was off the diet she was very resistant to even listening and pushing about it just makes her more determined to do exactly the opposite. She is a med student and one of those real smart young adults that haven't learned yet that they don't know everything. I love her and hate to think of her laying shaking in pain on the bathroom floor and thinking it is all nerves (someplace I found her all too often prediagnosis). It is just so frustrating. I know there is no easy solution and that the last person some young folks will listen to is Mom. I guess I just needed to vent but if anyone has any ideas I would welcome them. Thanks for listening.

Could you (or maybe your son) suggest doing an experiment... going off gluten again for a few weeks and seeing what happens? "I'm not saying that you do or don't have Celiac Disease, but it might be worth at least trying. You can always start eating gluten again at any time if you don't notice an improvement. Just an idea."

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Or could you just mail some Dapsone with a note that says nothing more than "I love you" and see what happens?

Or... If I recall correctly, you mentioned that your gene is recognized as a Celiac gene in another part of the world. Could you talk medicine with her... Ask in a curious tone if the GI mentioned her having that gene?

Or talk science/medicine in another way, stuff related to Celiac Disease as it relates to you instead of her, and end up talking about something that may make her wonder about one of her symptoms or something of the like?

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Thanks so much for all your kind replies. I think the letter idea is a good one. I wish I could mail her some dapsone but I would have to give myself an extreme glutening to get it. I have been gluten-free for 5 years and all those nasty antibodies have pretty much left so it now takes a whole lotta poison to give me more than a pinhead size lesion, YAYYYYYYYYYYYYYYY. I hope someday my DD can say the same.

If anyone knows how ill someone can become without the recognized celiac genes my DD does. She lived with me during my illness, she never knew me well as celiac hit me hard when her older brother was born. She was the child that came to me one night as I was dragging myself back to bed after my nightly 3 hour bathroom torture session and told me the family would understand if I committed suicide. Sometimes I wonder if alot of her denial isn't fear related. She watched me become sicker and sicker for so many years, eventually I wasn't even able to do shopping without medicating myself to the extreme and even then sometimes couldn't make even an hour trip out of the house. She watched me give up so many things I loved, horse back riding, walking at the lake, movies, drives in the country, rock climbing, gardening even reading became impossible at the end. I know you all are thinking that this should make her even more determined to follow her diet and prevent becoming just like Mom but for some reason it seems to have done the opposite. I had my genes done specifically because I strongly suspected that I didn't carry a recognized gene and we had her father tested and he was positve so we know it comes from both sides of the family.

All I can do is give her information, and I do try to do it in an informational way rather than a confrontational one. She did apparently notice my reaction because yesterday whenever we were alone she made sure that her hand was covering the worst of the lesions. We did talk a bit about makeup as I have just gotten some great gluten-free stuff and she mentioned that it was 'pointless right now' so perhaps the outbreak will get through to her even if Mom can't. She is very smart and has to realize what is going on but if I push her it will just close her down. I know how hard it is to be in college and trying to live with roommates who are not gluten-free, we just went through a year of agony with her brother in an awful gluteny living situation, but thats another vent. :)

I do so appretiate everyones input. It is so hard to know that there is a problem with your children and not be able to help them with it. I guess it's part of being a parent and just something I have to accept. I will write to her when she goes back and I think I will order some of the wonderful gluten-free makeup line someone was nice enough to post about to send to her with the letter.

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Raven, I just got some of that makeup myself, the Bare Minerals stuff. I love it. I think you're being a wonderful Mom and I know how heartbreaking it is when a kid is hellbent on self destruction. Unfortunately, I don't have much advice, as I'm a 23 yr old female who doesn't happen to have that stubborn, "I'm smarter than you" streak. I had it kicked out of me at 17, which I consider a very fortunate thing. Life is much less stressful when you don't know everything. I just hope that at some point, your daughter realizes that her doctorate isn't worth losing over being stubborn. That and if she's going to be a doctor, she needs to learn how to listen to other people's bodies. How will she do that if she can't even listen to her own?

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I wonder if it might not be worthwhile making an appointment (and paying the copay) with the doctor who told her she couldn't have it, and discuss her. Give him a list of all the symptoms that went away off gluten, and all that returned after going back on. Don't mention stress. If he brings stress up, give details of how sick YOU used to be, and tell him about what she said to you about understanding if you had committed suicide. Give him a picture of her from this week, with all the facial lesions. See if you can find one from pre-gluten-free days of her with similar lesions.

And then ask him if he would consider writing her a letter saying he had second thoughts about her not having it, since it has obviously done her such harm to go back on gluten.

And if he says no, tell him you will certainly consider a malpractice lawsuit.

As for how to deal with her--that's a tough one. I have a mother who is NOT skilled at effectively letting people know what they need to know, and she does tend to turn everyone off, even though she is nearly always right. Those years of child-rebellion go on well past college, too.

The only effective thing I can think of would be to say something vaguely like this(at the very end of her visit),

"I see two possible scenarios:

#1) What if YOU are right? What if this is stress? What is the best way to deal with it so that your health doesn't continue to deteriorate?

#2) I know you don't want to hear this, but what if I'm right? What if you are in denial here? What kind of doctor will you be if you can't get past your rebellion stage enough to to keep yourself healthy?

I want you to tell me in BOTH SCENARIOS (#1 and #2) what you think I can do to help. I gave birth to you, I raised you, I did my very best to protect you, and I love you. It's terribly difficult to watch your health deteriorate like this and keep my mouth shut when I believe I know what the problem is. I do understand your need for independence, but you must understand any mother's inability to keep still and shut her mouth when she watches her child destroy herself, either through stress or through poisoning herself."

(sigh) I'm so sorry you have this to deal with as well. I hope you can have a very Merry Christmas in spite of it!

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I wonder if the doctor that told her she didn't have it would change his/her mind if (s)he saw her now. :(

Okay, having thought about this situation a little more, it seems unlikey to me that she doesn't know that it's gluten that's making her sick, at least on some level. She's a smart girl and given her experience with this Celiac Disease, she's got to know that she is indeed gluten intolerant. That would suggest a few possible scenarios:

1.) Self-sabotage. Happens to the best of us. She's in the process of fulfilling her dreams (most likely) by becoming a doctor. Maybe she's not mentally prepared for success? Sounds strange, but people do this sort of thing all of the time.

2.) She's extremely stressed out and this is a cry for help. If that's the case, confronting and struggling with her over the gluten issue would make things worse, not better. The ideal way to handle it would be to get to the root of the problem, find out what she's so stressed about and see what can be done to help her (or help her help herself).

3.) It's like smoking. Maybe she's literally addicted to gluten. A smoker who hasn't smoked for two years could easily start again if there was a lot of stress in his/her life. I would think that those opioid peptides are at least as addictive as dopamine sticks. If this is the case, some amino supplements could help her a lot. DLPA, for one. L-Glutamine, of course. Maybe L-Tryptophan or L-Tyrosine? I don't know. There's a book called The Diet Cure with that offers information on how to use supplements to help break addictions.

4.) Maybe she misses you? And the rest of her family? Maybe she wants to be scolded or helped out, even if she fights it, because she's homesick? I guess this would fall under what I mentioned in number 2.

5.) She realized that she'd have to maintain a gluten free diet for the rest of her life, and she's not ready to do that quite yet. She thought of the social (and other) scenarios that would be affect and it upset her. If this is the case, the situation requires less intervention from you than the other scenarios mentioned. It will resolve itself, when she's ready. Just stay close and maybe try to indirectly remind her how much more normal and happy your lifestyle is when you don't eat gluten.

6.) Maybe she's not entirely sure she wants to go into medicine but feels obligated to? Or maybe she really does want to go into medicine, but feels obligated to which is making her unsure about why she's doing it?

7.) Maybe it's a struggle for independence, for control over herself and her life. When I was 18 I made a very, very foolish decision that I may not have made if someone hadn't told me that I wasn't old enough to make it. I'm quite sure it wouldn't have happened had I not been waiting my entire life to be an adult my entire life so I could do what I wanted to do and make my own decisions. My parents had been strict, not unreasonably strict, but it didn't matter because any amount of anything that I perceived as trying to control me solicited a response from me opposite of the intended response. I'm not saying that your daughter is like I was, but looking back to the situation I was in at 18, the best thing someone could have done was approach me in a casual way and have a non-parental conversation with me about life in general, ending up on that topic and discussing the matter with me in a way which got me to talk openly about it and think about it in a non-defensive way. "What do you think is going to happen? Where will this lead? How do you think you will feel about it once there's less stress and pressure on you?" In her scenario, "How did you feel when the doctor told you that you wouldn't have to avoid gluten? Did you feel like someone had given you your life back?"

Those are just some ideas that come to mind at the moment. I'm sure there are other possibilities as well, and maybe I'm totally off about all of them. I'm just remembering what I was like when I was in that life stage.

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Or, if you have the opportunity, ask if you should visit that doctor to see if you actually have Celiac Disease. Maybe you could start eating gluten again too! (It's a bit of a smart ass way to point out what she already knows, but I don't know her... maybe she'd think it's funny and actually consider the point?)

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I have some family members in denial about gluten, so although I can't possibly know how difficult this is for you, I do know how frustrating it is to watch someone poisoning themselves with food.

I know for me, especially in the beginning, it was hard to stop eating gluten once I started. When I was first diagnosed, I'd get accidentally glutened, and then I figured because I felt bad it didn't matter if I ate pizza or Burger King or whatever. But then once I cheated on purpose, it was very difficult to go back to being gluten-free.

Being a med student and having this has got to be incredibly, incredibly difficult. Not being able to grab something quick from a vending machine or from a cafeteria at school must be so hard. She has to know on some level that she's making herself sick, but she possibly just can't bring herself to stop. Eventually she will get so sick that she'll have to. And that's when she'll really need you to guide her in this difficult diet.

Sorry you are having to go through this!!! :(

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I am in agreement with a great deal of what you all have said. I didn't have much of an opportunity to talk to her alone unfortunately but I did have an chance to talk to her a tiny bit about the osteoporosis issue and a couple of other mildly related things. I can't push her at all but other family members can sometimes get through where Mom can't. Dad was quite upset with her skin also but I don't know if he will talk to her about it.

These three comments I think really hit things on the head.

"Being a med student and having this has got to be incredibly, incredibly difficult. Not being able to grab something quick from a vending machine or from a cafeteria at school must be so hard. She has to know on some level that she's making herself sick, but she possibly just can't bring herself to stop. Eventually she will get so sick that she'll have to. And that's when she'll really need you to guide her in this difficult diet"

"Maybe she's literally addicted to gluten."

"She realized that she'd have to maintain a gluten free diet for the rest of her life, and she's not ready to do that quite yet. She thought of the social (and other) scenarios that would be affect and it upset her. If this is the case, the situation requires less intervention from you than the other scenarios mentioned. It will resolve itself, when she's ready. "

"I see two possible scenarios:

#1) What if YOU are right? What if this is stress? What is the best way to deal with it so that your health doesn't continue to deteriorate?

#2) I know you don't want to hear this, but what if I'm right? What if you are in denial here? What kind of doctor will you be if you can't get past your rebellion stage enough to to keep yourself healthy?"

I wish I could talk to the second doctor but you know those new HIPPA regs plus he is 3 states away and I am lucky if I can get even 40 miles. She has also never told anyone who this doctor is and paid for the testing herself rather than submitting it to insurance. I hate to say it but anyone else wonder if he even exists? I do think that that the two scenarios mentioned are a good way to go. Not confrontational but letting her know that we are aware that something is going on. She is working so incredibally hard toward her degree but really enjoys her program now that the bachlors is out of the way. I do worry that she drives herself to hard though and that the stress of all that is going to make things even worse, leading of course to an excaberation of the celiac symptoms. I do think I will also try to find some of the research on the 'honeymoon' period that many young adults celiacs go through. You know the period that lead to doctors thinking, falsely that we outgrow celaic.

Thank you all for your input. Sometimes it is hard as a parent to step back and look at things objectively. The suggestions and thoughts you all have added have helped a great deal.

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She has also never told anyone who this doctor is and paid for the testing herself rather than submitting it to insurance. I hate to say it but anyone else wonder if he even exists?

Hard to say without knowing her, but it's possible that she decided on her own, or with another med student or (hopefully not!) professor that she doesn't have Celiac Disease.

I'm having a hard time understanding why she'd pay for those things out of pocket if she has insurance though, especially considering the fact that she's already been officially diagnosed. What kind of college student has the cash to pay for doctor appointments and tests that his/her insurance company would pay for?

Do you have any photos of her with clear skin from when she was gluten free? Maybe mailing her one of those with a note that just says "I love you" would be more effective than drawing attention to the actual symptom itself?

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Dr. Stephen Sinatra, a very well known heart doctor, does the foreward in one of my books (can't remember which one at the moment). He discusses how his son has what he termed "acquired" celiac disease....the son doesn't have the recognized celiac genes either, but most definitely came down with celiac disease. Dr. Sinatra felt it was due to toxic mold exposure, but perhaps in the end it was just that his son has a gene which is yet to be identified. I also have read several places that doctors pretty much admit that all the genes are not yet known, and all the factors are not yet understood....that it's not enough to even have the genes, that other precipitating factors (not yet known) are involved in whether or not you get celiac disease.

So having the the thus-far known celiac genes is not a pre-requisite, apparently. Your daughter needs to understand that simple fact.

Being a med student, perhaps your daughter could be persuaded to "confer" with the experts in this country about the situation. Eventually, she may even want to specialize in this, you never know. Certainly it is a condition which hasn't been over-studied in this country! Several of the most prominent specialists are at the U of Maryland, I think it is.

Like with a lot of other conditions, there always seems to be a considerable period of denial with regard to acceptance. I have several family members who have the gene yet have been determined to "not have any symptoms." Bit by bit they are coming around, but I've been hammering at it (carefully) for two years now.

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Dr. Sinatra felt it was due to toxic mold exposure

Mold is only toxic if you're sensitive/allergic to it or if there's a lot of it. Except for the small percentage of the population who is sensitive/allergic to mold (any kind of mold), it's more of a danger to the building than anything.

(Don't mind me, I'm a building science geek. :lol: )

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What kind of college student has the cash to pay for doctor appointments and tests that his/her insurance company would pay for?

Ones with trust funds :D

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