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sharps45

Feeling Waaaayyyyy Guilty!?

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:( I was diagnosed last September, although I've suspected celiac for many years. My father and older sister both had it. Just yesterday my daughter was diagnosed positive. I'm devastated! How can I not blame myself for this? I don't know if she blames me, but my own guilt is enough. Anyone else out there with the same feelings?

diagnosed 9-07, symptoms for many years

really only get sick from oats and white bread

hard to say goodbye to Olive Garden!

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As Richard said, you are not to blame for this. Your adherence to the gluten-free diet, or non-adherence, had nothing to do with the genes your daughter received. Neither did it have anything to do with her having the disease triggered.

The good news is that you all know, and this is something that you can handle. It will take effort. I know it did for me, but YOU are in control now. No guilt--just positive feelings now. You know what the cause is, and you alone can control it.

Most of us here have been where you are. It is the starting point on the journey to good health. If you need help along the way, we are here. :)


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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It is hard to deal with the guilt, even when we KNOW that we have no control over our genes. I went through years of telling the doctors that something was wrong with my children, but I was so sick they attributed everything to the kids dealing with my illness. I watched my kids stop growing, become so moody that they withdrew from all friends, watched them go through all the psychotropic drugs with almost fatal effects, I could go on but I won't. We went to doctor after doctor, even had one use scare tactics on my DD, threatening her with sending her to a Gi for "awful nasty and painful tests" if she didn't 'straighten up' and stop complaining. This child was so ill that her lips would turn blue and she would shake for hours after gym class or horseback riding. By the way this 'doctor' is now head of peds at the hospital I wouldn't step foot in again if I was dieing. I had lots of reasons to hate and blame the doctors, but who did I really blame, me. For not looking harder.

We are Moms, and somehow we get this idea that we are supposed to know everything. When something like this occurs we tend to feel worse about it for our children than for ourselves. You didn't know, this was something that you couldn't help. I had someone ask me once if I had known I had celiac would I have chosen to not have my children knowing I could pass it on. I thought about that for a long time and realized that I would have missed so much if my children were not with me. It hasn't been easy but in the end it was something one of my children said that helped the most. We were talking about children one day and he said "I wonder how tall my kids will be? I will make sure they don't suffer like I did." It made me realize that I spend to much time thinking about the past and they way things could have been instead of looking to the future and they way things will be. We now have the knowledge and that is being passed on to our kids along with this gene. To some extent I know that on dark and lonely nights when I am wallowing in the 'could have beens' guilt that I was blameless, but it is hard to get through those nights. I know I probably haven't been real helpful. But you need to know your not alone. If we didn't love our kids we wouldn't have those guilt feelings, but we can't let them have a negative effect. We need to try to keep in the forefront the knowledge that we are not at fault, we can only go forward and do the best we can from here.


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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There was no way for you to know and the control was out of your hands. What you do have control over is what kind of an example you set for your daughter. How well you adhere to the diet . . . If your daughter sees you cheat, she'll think it's OK for her to cheat. What kind of attitude you have about the whole situation . . . If you act like it's the end of the world, so will she.

The other day, I overheard my son say to my daughter . . . "When you have kids, they'll have Celiac, too". She asked me if this was right. I told her that there would be a chance that they could, but there is also a chance that they won't, but that since she already knows all about it and how to eat right, it won't be too big of a deal. I have also told her that she will be a better cook than her friends because she can have all the yummy things that she wants, she just won't be able to buy them already made, she will have to make them herself.

Control what you can control and let the rest go.


Janet

Experience is what you get when you didn't get what you wanted.

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I know I can't help what genes I pass on, but there is still some responsibility there. My DW told me that our daughter never complained about the straight teeth and auburn hair I gave her, so she shouldn't complain about this. My wife has a nephew who has celiac, and absolutely no known relatives with it.

I stick steadfast to my diet, and will do my best to see that she does too. I have already shown her this site, so maybe we'll see her on here soon.

Thanks for the pick-me-up advice.


diagnosed 9-07, symptoms for many years

really only get sick from oats and white bread

hard to say goodbye to Olive Garden!

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I know I can't help what genes I pass on, but there is still some responsibility there. My DW told me that our daughter never complained about the straight teeth and auburn hair I gave her, so she shouldn't complain about this. My wife has a nephew who has celiac, and absolutely no known relatives with it.

I stick steadfast to my diet, and will do my best to see that she does too. I have already shown her this site, so maybe we'll see her on here soon.

Thanks for the pick-me-up advice.

If anything, your daughter will probably be happy that you helped to make her safe sooner than she would have been on her own. I know that's how I would feel. I bet she starts bringing you yummy gluten-free food.


If you're going through hell, keep going. ~Winston Churchill

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You shouldn't feel guilty. My Brother and I have never thought to blame our Mom. I think it makes us all closer anyway. I think if I had children and they didn't have Celiac Disease I would feel weird. I know I would have a gluten-free house and it would just be hard to not have my way of life be passed down to my kids. Though, I have been gluten-free a lot longer than you, so, that may be why I feel differently! Just think of Celiac Disease as something unique. When handled properly it is anything but terrible! Good luck to you and your family!

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