Should I Try To Contact Birth Parents After Testing Positive?

[shopgirl]

Since this forum has been an invaluable resource for me since being diagnosed, I thought I'd throw a moral dilemma out there with which I've been struggling since my diagnosis.

I was adopted as an infant (27 years old now). I have amazing, wonderful parents and have never really had an inclination to seek out my birth parents. I know my birth mother lives in-state, not far away, but my birth father is a complete mystery. If it weren't for the Celiac diagnosis, I would go on living my own life, occasionally sending out grateful vibes to the universe but keeping it at that. I know my birth mother has a family of her own now although she has put in through a registry that she would like contact at some point.

But all of this changed after I was diagnosed and now I'm wondering what my responsibility is to contact these people. I definitely don't want a relationship but what if my birth mother is asymptomatic? Or has undiagnosed symptoms? What about her children? I'm pretty sure I have a valid address. Would a letter suffice? Should I just explain the situation, encourage them to be tested, and that's the end of it? Is the genetic connection strong enough with Celiac that I should contact them?

I asked my GI doc her thoughts on it and she said she really couldn't say because she hasn't seen anything like this before. My own mom says it's completely up to me. Hopefully some of you out there have some thoughts on this kind of unusual situation? I'd appreciate the help.

[Skylark]

If I were in your situation, I think I would send a card and letter with no return address. It sounds like you won't be happy with yourself if you learn at some point in the future that your birth mother has been suffering with undiagnosed celiac. The genetic connection with celiac is estimated 1 in 20, but I think there is also gluten intolerance in celiac families that would push it higher than the studies going by biopsies.

I would find a beautiful blank card, or one with a sentiment that feels right, and in a letter in the card tell her I was fine and happy, and explain the celiac diagnosis and the genetic link and suggest she get tested. Nothing encouraging a relationship if you don't want one. If you don't use a return address, it will discourage reply. I might even drive to a different area of town or mail it from work so the letter gets a postmark from a different zip code.

[SGWhiskers]

You don't have an obligation to do anything, but if you would like to inform your birth mother, you could have your doctor's office mail test results with information on celiac disease to your birth mother's address with your written permission. I am estranged from my father, and I had a physician's office offer to send the request for medical history to my father.

[cassP]

i like both suggestions above... i think you should send your birth mom the information, so she can get tested if she wants. you'll feel relieved that you passed on the information.

[Mari]

I would think that if you just contact your b.mom telling her she may have given you a "disease' that would be like any mon's worst fear coming true. Truely upsetting and shocking. And even worse because she gave you up and couldn't care for you. Since you have not had the genetic analysis of the HLA DQ gene you don't know if you inherited this intolerance from one or both parents. There is no way to tell which parent contributed to your intolerance to gluten and if you only inherited one celiac gene then only one of your parents gave it to you.

Maybe you could write her and tell her that you have wonderful parents and are living a happy and satisfying life but have no desire at this time to meet her and your half-sibs. This will not rule out being able to meet them in the future if you change your mind later on in life. Then you could feel free to tell her about your inherited problem and explain about the tests she would need to have to know if she, her other children and close relatives are at risk. There are both public and private mailboxes to protect you from being contacted as one of the others suggested.

Since she has indicated an interest in you she may have been worrying about your life since she let you be adopted.

One of my friends was adopted as a baby, After her adoptive parents died she began to look for her birth mother. Eventually she contacted her and found a whole new family of relatives. Her mother had worried about her all those years.

[julandjo]

I would think that if you just contact your b.mom telling her she may have given you a "disease' that would be like any mon's worst fear coming true. Truely upsetting and shocking. And even worse because she gave you up and couldn't care for you. Since you have not had the genetic analysis of the HLA DQ gene you don't know if you inherited this intolerance from one or both parents. There is no way to tell which parent contributed to your intolerance to gluten and if you only inherited one celiac gene then only one of your parents gave it to you.

Maybe you could write her and tell her that you have wonderful parents and are living a happy and satisfying life but have no desire at this time to meet her and your half-sibs. This will not rule out being able to meet them in the future if you change your mind later on in life. Then you could feel free to tell her about your inherited problem and explain about the tests she would need to have to know if she, her other children and close relatives are at risk. There are both public and private mailboxes to protect you from being contacted as one of the others suggested.

Since she has indicated an interest in you she may have been worrying about your life since she let you be adopted.

One of my friends was adopted as a baby, After her adoptive parents died she began to look for her birth mother. Eventually she contacted her and found a whole new family of relatives. Her mother had worried about her all those years.

I second this. I do feel it's right to give her the info, but she also deserves a "cushion" of knowing more than just that, you know? Yes, you happen to have Celiac disease, but the fact that she made an adoption plan for you also means that you enjoyed xyz upbringing, xyz relationship with your parents, xyz opportunities, etc. You're not obligated to start a relationship with her, but please do give her more than just the medical facts. Good luck; I imagine this is a huge step!

[shopgirl]

Thanks for all the responses; I appreciate the input.

I ended up asking my physician her thoughts on this when my GI doctor sent me for a pneumonia vaccine (Did anyone else need this after their diagnosis?) and she encouraged me to send a letter but to wait a couple months until I've had a little more time to heal and sort myself out.

I definitely understand about not just dropping a one-line note in the mail and that being the end of it. It's going to take some time to find the right words to say.

What a way to introduce myself to my own birth mother, if even from afar. I just desperately don't want her to feel bad or guilty in anyway, even though it's obviously not her fault.

I definitely have more thinking to do but thanks for the help everyone. It's given me some new ideas on how to approach this.

[cassP]

no reason for her to feel guilty... its just genetics- i dont think MY parents should feel guilty..

the pneumonia vacc- now that's a first.. i have not heard of docs suggesting this right after a celiac dx.

hhhmmmmm???? idk

[RunningPickle]

Hi.

I'm 29 and I was adopted as an infant. At 17 I was diagnosed with Celiac Disease. At 20 I identified and contact my birth mother for various reasons. Later through her, I was able to meet my birth father's family as well (he's deceased since I was 4).

For me, the 1 in 20 (5%) chance that it was genetic wouldn't have been enough to contact them alone. I had personal reasons. I have a relationship with both families now and that's something we both wanted. No one in my birth family, on either side, has Celiac Disease. My paternal grandmother had a range of stomach issues, and she was even tested after I recommended it to her, but her biopsy was negative.

From my experience, it would have been devastating to my birth mother for her to have just received this basic medical information and no other contact. Knowing my birth-mother now, I know she would have worried and blamed herself. She would have wondered how bad my Celiac Disease is, and if I'd developed any of the wide range of complications. Even if she tested negative for Celiac Disease, she would have blamed herself, wondering if there was something she did during her pregnancy to cause this. But every person is unique in their desires. And for all you know, if it was passed genetically (19/20 or 95% chance that it DIDN'T develop genetically), you don't know that it was her genes versus your birth-father. Or, she may already know she has and has been dealing with it for years (though based on the fact it sounds like she's tried to contact you, she probably would have tried to inform you).

I love the relationship I have with my birth family, it's indescribable and much different than I thought it ever would be. It's just my opinion, but if you don't want a relationship with her or her family, then maybe it's best to say nothing at all. There are pros and cons on both sides of the decision. Only you know what is best for you and your future.

Good luck!

[ravenwoodglass]

Hi.

But every person is unique in their desires. And for all you know, if it was passed genetically (19/20 or 95% chance that it DIDN'T develop genetically), you don't know that it was her genes versus your birth-father. Good luck!

Celiac is definately a genetic disease. Not everyone who carries the genes develops the disease though. It usually requires a triggering illness or stressor but if someone is celiac it is because they inherited the genes for it from one or both parents.