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SusanB26

Family History

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Having been recently diagnosed with Celiac along with an allium (onion, garlic, chives, shallots, leek, scallions) allergy I am learning every day.  Luckily I am a good cook and have learned how to substitute many things and our food still tastes good! 

 

I have a strong family hsitory of Autoimmune diseases.  My uncle had type 1 Diabetes and my aunt has RA. I myself have hashimotos and now Celiac too.

 

My father used to keep a journal.  We never knew the extent that he did this, he would write little notations from the day in a small calendar book.  After he passed away from cancer we took a look at those books and his notations.  The poor man was sick with stomach issues for years and years.  And what did he eat to try and feel better?  Bread and crackers.  He loved his cereal and a good beer.  He was plagued with skin issues like adult acne, rosacea, eczema and mystery rashes, and always had some sort of Rx cream. 

 

I feel guilty that I never put it all together for him, as I was the one who managed his care (I have a background in healthcare) behind the scenes, and we found many doctors' knowledge unimpressive unless something was right out of the textbook. My heart aches for him knowing that he probably had Celiac all those years. :(

 

*SIGH*

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my grandpa, too, had terrible digestive issues.  when i was a kid, they lived with us for part of the year and we had one bathroom.  i remember waiting and waiting and waiting.  he also used bread and crackers as comfort food.  and he loved his beer, too.  he died of 'cancer of the bowels' - now i am not surprised.  he was of english and native american descent - i'm sure that's where at least one of my genes came from.  my dad won't even get tested  :(  

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I completely understand! My Mom had celiac all her life. I used to think she was a hypochondriac. I told her this many times to her face. ALL of her various symptoms cleared up on the gluten-free diet, but she was 50 before she was finally diagnosed. Because she had it for so long her gut never completely healed. She had to get vitamin shots monthly. After my Dad died she stopped going to the doctor and the law says no one could force her. Eventually she started showing signs of Alzheimer's. I STILL couldn't force her to see a doctor. THEN she got leukemia.

 

I BEGGED the doctor to give her some B12. I knew that B12 deficiency could mimic both Alzheimer's AND the leukemia. He insisted that he had tested her twice and that she did indeed have both. He wouldn't give her the B12 though. So until the day I die I'll never know if she really had those diseases, or if a simple B12 shot could have saved her.

 

Guilt? I've got it, both for the things I said to her before her celiac diagnosis, and for not pushing harder for the B12. I should have insisted until he finally gave it to her.

 

But as a very wise friend of mine told me, "Don't put a question mark where God has put a period." So I have learned to accept what happened, and to move forward. I will NEVER call anyone a hypochondriac again though! And as for doctors, well I never trusted them to begin with and now I'm even more wary, but that's another long sad story.

 

So that's what you need to do. Accept that you can't change the past, but do what you can to change the future. That means having your children tested, and encouraging your siblings to be tested too. And if your Dad has siblings, they should be tested too.

 

(((((HUGS))))) to you.

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I hear you. I just spent the weekend with family, staying with the aunt who has had most of her spine replaced with metal after the bone disintegrated, has diabetes and thyroid problems, and definitely has digestive issues. Though she was one of the first people I told about the dangers of gluten after figuring out my problems, she seems to be more concerned about what she'd have to give up than her overall health.  She's 70 and the idea of changing her entire diet when she already can barely walk is just too much for her to handle.

At this point, I think the kindest thing I can say to her is that I understand why she is hesitant to inquire further about her own potential to have celiac, but that at least it could give her something to blame for her health problems, other than herself.

When I first found out about myself, I also told my mother about the links between gluten and her known symptoms and recommended that she do some more research for herself. But that just fell on deaf ears. 

Anyway, I say this because sometimes informing those who are older and already set in their ways isn't guaranteed to do any good. So I wouldn't feel too guilty for not being able to figure out the gluten connection" sooner ... especially because all of their doctors missed it too!

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