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ravenwoodglass

I Feel Helpless

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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.

I do agree with this, especially when the symptoms can be so sporatic for so many years. It is the damage that most folks don't know about until it is too late that is the most worrysome. She is smart, and celiac is a hard thing to deal with everything she has going on. I know she will come around eventually, she will have to. At some point she is going to get sick enough for it to again effect her ability to get to classes and rotations. Or she will get there and collapse, the more likely scenario for this driven lass. The med personell around her won't ignore her ashen complexion, trembling and blue lips. Once that happens she will have no choice but to stop ignoring the issue but I hate to think she may have to get to that point again.


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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I do agree with this, especially when the symptoms can be so sporatic for so many years. It is the damage that most folks don't know about until it is too late that is the most worrysome. She is smart, and celiac is a hard thing to deal with everything she has going on. I know she will come around eventually, she will have to. At some point she is going to get sick enough for it to again effect her ability to get to classes and rotations. Or she will get there and collapse, the more likely scenario for this driven lass. The med personell around her won't ignore her ashen complexion, trembling and blue lips. Once that happens she will have no choice but to stop ignoring the issue but I hate to think she may have to get to that point again.

I agree with the sporatic symptoms, I would have good months and bad months in the begining. It wasn't until almost 2 and 1/2 years later it became all bad months and things went downhill quickly.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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I do agree with this, especially when the symptoms can be so sporatic for so many years. It is the damage that most folks don't know about until it is too late that is the most worrysome. She is smart, and celiac is a hard thing to deal with everything she has going on. I know she will come around eventually, she will have to. At some point she is going to get sick enough for it to again effect her ability to get to classes and rotations. Or she will get there and collapse, the more likely scenario for this driven lass. The med personell around her won't ignore her ashen complexion, trembling and blue lips. Once that happens she will have no choice but to stop ignoring the issue but I hate to think she may have to get to that point again.

I can't even imagine going through as much as it sounds like your family has. It seems like your family's symptoms are a lot more severe than most people's. :(


Joy

Not gluten free yet because I'm waiting to be tested.

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I was thinking the same thing, those are very severe symptoms, I was bad but the laying on the floor...that is scary....I cannot imagine.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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Does your daughter believe you are a hypochondriac? How does she explain your problems and the solutions to your problems?

I'm a 37 year old father of 4 children under the age of 5 so consider the source of this advice........bang on her about this everyday.

I tend to think of gluten the same way I think of smoking. We know it's bad for us and we don't do it ourselves so if a close relative with symptoms of gluten intolerance is consuming gluten we shouldn't "let" them do this to themselves. Would you say nothing if your daughter smoked around you?

Your daughter will not stop loving you for reminding her to be gluten free. She might get annoyed but sooner or later she will come around.

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I agree with the comment that on some level she knows, but is in denial.

Is there anyway you can get hold of the records of the doctor who originally diagnosed her and show them to her? Ask her what kind of doctor is she going to be if she ignores the lab reports and biopsies and diagnosis of other doctors? Of course her intestines have healed by now, but that doesn't mean she never had it. IME doctors don't take a lot of stock in what you tell them other doctors told you. But for better or worse, they always believe those lab results. Even this big wig guy probably wouldn't have said what he said if he had seen the biopsy report himself. Your daughter might be the same way. Seeing that biopsy report in black and white, the way she sees everything she is learning in med school may help her come around.

Also, I would not skirt around the issue of her skin lesions. You don't have to be mean, but telling her she really needs to see a dermatologist might jolt her back to reality. Show whatever pictures of you with DH that you have. Let her see how similar it is to hers. Maybe her vanity and a diagnosis of DH from a dermatologist will help her come to terms with it and go back on the gluten free diet. If the derm doesn't figure it out on his/her own, perhaps you can challenge her ask to get her skin biopsied specifically for DH. And perhaps you can motivate her to do it by agreeing that if it is negative (proven to you by you actually seeing a copy of the report, not just her word), you won't say another word to her about gluten free. The desire of kids to prove you wrong can be a powerful motivator.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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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.

I would hope she sees the lesions in the mirror and would have more questions?

I feel for you. Good luck!

Snowball

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