Recently Diagnosed

[rebeldog]

For anyone out there! I am 27 years old and like many of you have had a trying life so far (as many of you have had) and I am scared and looking for some support. Here's my story if you are interested. I know this is long but I thought since the courage has hit me to seek some support I better get it all out while I can.

After having 2 kids, first my brother who is 31 now and then me now 27, my parents (mother Iitalian - father Polish and Irish) decided that they were better best friends then married. When I was 6 they split up but were always really good friends. I guess you can say they had one of those really good breakups. When I was 9 my mom got breast cancer, had surgery, radiation and chemo and was in remission for about 4 1/2 years when the cancer came back in the form of bone marrow cancer. She went on chemo again but after a year she could not take being sick anymore and stopped treatment. She was told she would only live about 6 months and passed away a few months before I turned 16. She was only 40yrs old! She also had a hypothyroid condition and diabetis. My moms parents - mother - had breast cancer, beat it and lived to be 78 when she had heart failure and passed away - father - who had lung cancer and died when I was 7. My father was adopted and had 3 brothers all but 1 have passed away (war, heart condition) the one alive has many health issues like diabetis and heart problem to name a couple. My father is a recovering alcholic who recently has heart bypass surgey, 1/4 of his lung removed from cancer and an anxiety condition, he is 54! I have no idea about his parents except that his father was from Northern Ireland (where I have read has a strong connections to Celiac Disease). My brother is healthy and doing great. I on the other had had 2 lumps removed from my breast at age 17 and 18 (NOT CANCER), was diagnosed with hypothyroid condition and started getting really sick in May 2005 with diarrehea, constipation, stomache pains, night sweats, missed periods, headaches, bloating, vision problems, really dry skin, loss of sexual interest, fatigue and anxiety. My family doc who treated my mom for a long time and me since I was about 12 sent me in for all types of tests - blood work, CT scan, MRI and X-rays, scin scrappings, stool samples, urine samples and a few others finally she sent me to a GI who did an upper endoscopy right away and diagnosed me with Celiac Disease in January of 2006. I began the Gluten Free diet immediatly and have felt great since. NO SYMPTOMS WHATSOEVER! (unless of course I get a hidden gluten in an unlabled food) I went in to see him a couple days ago and he said I am doing great, healing and after some more blood work found out that I do not have a thyroid condition after all - I was misdiagnosed because of celiac disease. My husband who is 31 has been a great support system - trying some of the nasty foods first and just understanding and listening.

Anyway, the reason for all this is because as you can tell I really only have my husband to rely on to talk to and get support from. I am not looking for any sympothy I am simply just looking to find some people that share in this disease that I can connect with. I don't want to overload my husband and at this moment in my life I feel that I could benifit from talking to others. I am not real good at asking for support as at 16 I got my own apartment worked 2 part time jobs and finished school without asking anyone for help (mainly due to being stubborn and proving I could be independent) until I met my husband when I was 18.

We were talking in February of 2005 about starting to try to get pregnant but when I got sick we stopped, now that I am a Celiac I am really concerned about getting pregnant. I never imagined I would not a have kids mainly becasue my mother was my best friend and we had such a loving, respectful relationship and I REALLY REALLY want to pass on the love that I was given as a child to my own. I don't think there is a better way to show the love my husband and I have for each other than bringing a child into this world that is a part of both of us.

I am concerned that there is just so mainly health conditions in my family that I can pass on to my child that now adding Celiac Disease to the mix has really got me thinking that maybe we would be doing a bad thing by having a child. AHHHHH!!!

For anyone who has read this, if nothing else thanks for allowing me to get this out - it has helped so much already just to get the concerned out of my head for a moment.

[Carriefaith]

Welcome to the board You have found the right place! You will get lots of support here! Having a child would be a big step and the child may also have celiac disease, but since you already have celiac disease and know what to do, then there won't be too many problems. You may have to find gluten-free formulas.

[penguin]

Welcome to the board! I'm sorry about all of the losses you have endured, and I'm glad you have a supportive husband. Incedentially, my father was adopted also and he died when I was 13.

I'm currently grappling with the "should we have kids" question, also. I'm 22, got married last July, and got diagnosed in February. We're not planning on having kids for another 3-5 years, but I don't know if it would be right to bring a child into this world that may end up with this disease. I know it's not like passing on any number of far worse diseases, but still. I'm with you there and I'm not sure what to think yet either.

[rebeldog]

WOW! I guess I have found the right place for me!!!! I have never used a sight like this and when I went in to see what my post looked like I could not believe that people were already reading it let alone replying. Thanks! I have some relief knowing that I am not alone. I never thought I would say this but it feels good reaching out to others.

[Guest nini]

Welcome to this crazy celiac family! I was dx'ed with celiac when my daughter was 3, and yes she has it too, but you know what, it's ok! If you stick to your gluten-free diet, then your pregnacy should be very normal! And yes your child would run the risk of having celiac, but that is not a terrible thing! It's really not a difficult diet once you get the hang of it, and I think kids adapt much easier to it than adults... sure there are always issues with parenting a celiac child, and with all the other genetic health risks you mentioned, I can understand your fear of passing them on to a child, BUT you cannot live your life in fear of "what if"... do not deprive yourself of the love of a child because of fear of passing on certain genetic defects! My daughter is the most amazing person in my life, she gives me total unconditional love and I wouldn't trade it for nothin! And she likes it that we share the gluten-free diet together!

[Guest Viola]

Hello... Welcome to the board. I think you will like it here as we do anything from help, to recipes, to humour. There really is a great bunch of people on this board

You have really been through a lot! They say that trials make you strong, so I'd say that you are one very strong young lady.

I can understand you thinking about the genetics of having children. I had two daughters, who are now grown women. Our eldest did get Celiac disease from me, but she controlls her diet well and is a fairly healthy, active woman. Our youngest is a healthy lady and her son is now 19 and showing no signs of Celiac. So... yes there is a chance of passing on the disease, however, if they are diagnosed young and stick to the diet (which is a very healthy diet) they should have no other resulting health problems.

Having said that, I really don't know about the percentage of getting breast cancer...but even there science has made great strides in treatments.

Hope this gives you something to think about and helps with the discussions

[megsylvan2]

Welcome. I'm still pretty new here myself, and I've got to say, this forum is fabulous! To me it is a lifesaver because there are other people here that I can talk to, who know what it's like and understand what I am going through. Lots of people here with good information, and good hearts, who reach out and respond. It is so reassuring to be able to reach out here and have others respond and understand, and so helpful to be able to ask questions and learn, or sometimes vent. Especially since we are not getting too much in the way of support from the medical community. I, too, am very thankful to have found this site.

So, grab a cup of cofee, pull up a chair, and happy reading! There's always so much to read that, for awhile, there's hardly any time left to post!

[lonewolf]

Welcome! I'm glad you found us. I too am sorry for all the losses you have endured already.

As for having children, I had 3 before I found out I was gluten intolerant (never been diagnosed "officially" but the diet test was pretty convincing). My 11 year old son is also gluten intolerant for whatever reason. I'm sure glad I have him, as well as my other 3 (I have 4 total now) and I can't imagine life without any of them. Children are a blessing, even if they do have their little issues. We've had to do some adjusting for birthday parties and special occasions, but it's not nearly as hard as I thought it would be. Don't let Celiac be the deciding factor there.