Friday, August 22, 2008

A Question

Sarah asked:

Here's a question GFF, How do you think your kids "got" celiac? My doctor said mine was probably "silent" celiac until stress-induced sytmpoms brought it on and a biopsy tested positive...I've also heard it can be genetic, but since your kids had it from birth, and neither of you have it--what is another way people can get it? Thoes are the only two ways I've ever heard.

I believe it's genetic. I believe SuperDad has it too (he gets downright *ill* when he eats pizza). I believe my MIL has it too, and that it causes the fibromyalgia-like symptoms from which she suffers every day. Can I convince them? Probably not. :( Because, if the amazing improvements we've seen in the health of our children isn't convincing enough, I don't know what would be.

10 comments:

kel said...

In my experience it absolutely is genetic, and a stressful event can "trigger" it, or you can just be a carrier your whole life and not have any trouble. My sister had the gene test done recently because she was having symptoms and we know my mom has it, and it turns out she has TWO copies of the gene, which means my dad has it too. He has no symptoms though.

I sort of feel like a time bomb. Chances are good that I have at least one gene and I don't know if I'll ever present with celiac or if my kids will.

Stacey said...

Hi!! I read your blog for information and motivation on becoming frugal. Alot of things you say make sense and it keeps me on track. I often see your posts on being gluten free. Being a mother of five, I have always felt lucky that all my children were healthy. However since I have started reading your blog, and thinking to myself, well there are some different intolerances to certain things that some of my children go through and maybe I should have them checked out. Since, I have found out my 9 year old daughter is lactose intolerant. My 2 year old has asthma and I have cancer. These things all probably could have been diagnosed at a younger age but I always figured that they are who they are and they just respond differently to certain things. I am unsure if it is hereditary or not. I guess what I am getting at is thanks in a weird way for having a great blog, it made me really think, and now we have had to make changes. But it's worth it. The asthma could with medicine (I am told) be grown out of. My daughter who is lactose intolerant doesn't get bad stomach aches or stinky, embarassing gas anymore. We got it under control. Thanks a bunch!!

Stefan, Sarah and Lukka said...

GFF, if Superdad were to get a biopsy and was revealed as positive (had celiac), would he change? Or would he not even get a biopsy done? That is scary as it can result in stomach cancer at a young age if left untreated. I hope he is okay!

Meli n Pat said...

My sister-in-law asked to be tested and was told by her doctor that Celiac was not in the U.S.! (this was only 4 years ago) We were told it was genetic, mostly from northern European descent, and my FIL has severe wheat allergies, but tested negative for Celiac. I don't think anyone else my husband's family was tested, but there are definite stomach/intestine issues on both sides of his family. Several of his mom's family have died from colon cancer. Not something I want to have my husband mess with. A dietary change is nothing compared to cancer. Or Crohns, or...

Li loves David said...

I had 32 years of little or no symptoms, and 5 years of severe symptoms before being diagnosed. My gastroenterologist believes you have celiac disease all your life, you just might not feel it all your life. Through my support group I know many celiacs who were asymptomatic before diagnosis. Lots of us (including myself) had multiple negative test results before finally getting an accurate diagnosis. Even if someone doesn't have celiac disease, they may be gluten intolerant.

Bottom line: if it makes you feel icky, DON'T EAT IT.

Jamie said...

Celiac is ALWAYS genetic. You can have the gene but not be symptomatic, but you cannot have Celiac and be sans genes. If a close family member has it, chances are 1 in 22 that you will vs. 1 in 103 Nationwide.

The thought process is that some sort of life stressor triggers the disease. That can be birth as it was for my 6yo and going to daycare for my 3yo.

For me, its not worth feeling ickey to eat all that pasta and pizza. We made an AWESOME GFCF Zucchini Bread today and no one noticed the difference. (Except in lack of rise!)

Cheers!
Jamie

zdoodlebub said...

My grandma was dx 5-7 years ago. So I'm aware. Plus, when Z was dx with autism, we looked into the diet-restriction treatment options. But my gut never told me that was it.

However, it's on my radar and it's not going away. I have faith that when the time comes to address it, either for myself or my sons, God will yank my chain. In the meantime, like I said, I read you and others, stay educated and keep in on the radar.

I'm clucking my tongue at SuperDad. Not to be all lecture-y. But, dude.

And yet I imbibe the pee pop, knowing how bad it is for me.

And fin.

Jess said...

I don't know that I agree that Celiac is ALWAYS genetic. I have it and no one else in my family does, as far back as my grandparents remember. While it was a stressful event that triggered it, unless there is something my mom is not telling me, I don't think it came down from my family.

Shirley said...

Celiac is by definition genetic (http://www.celiaccentral.org/Newsletter/News/News/Celiac_Disease_Press_Room/FAQ_About_Celiac_Disease/236/), but 2-3% of folks are biopsy-proven celiacs and they do not have the genes identified to date. (Read more here about percentages and genes here http://celiacdisease.about.com/od/diagnosingceliacdisease/a/DNAtests.htm.) So not having the genes is not a guarantee of no celiac. My doctor told me that there is speculation that not all the genes have been identified yet.

As far as nobody else in one's family having it, 97% of the U.S. remains undiagnosed so we probably all have multiple family members who were celiac, but never diagnosed.

Lactose intolerance is often secondary to celiac. Once the gut heals after going gluten free, many (including myself) are able to reintroduce lactose products slowly and eat them regularly with no problems.

Celiaccentral.org has a section called personal stories. I think that is really helpful for people to read to see if their own issues could be gluten related. The stories are so diverse and encompass a multitude of symptoms. If you recognize yourself or your children there and can ultimately be gluten free and see a resolution of the issues, that's beyond fantastic. I wish I could have foregone the lifetime of health issues I had before going GF.

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