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Family Wanting To Learn More


Flaykee

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Flaykee Rookie

I was diagnosed in January 2013, so it's a learning experience for me and my family. Hubby has been pretty good at helping me stay gluten-free, a few hiccups but we're getting there.

Went visiting my parents today. My mom is always asking me what I can't eat. My toddler niece offered me a cookie and my mom says, "No, Auntie can't eat that. She'll get sick." So my mom is getting it. She was even asking how she can make me my carrot cake for my birthday!

Then, my dad was asking me more about it....celiac disease, food, symptoms, how long must I have had it before getting tested, if I've gotten sick since "not eating wheat", what all has gluten in it, what gluten is... He gets up, goes into the kitchen and starts reading labels. "Son of a gun, it must be hard, There's so much you can't eat."

It feels good that they want to learn more about celiac disease and are doing their part and aren't just rolling their eyes because it can't be that bad, sort of thing. They know how ill I was before going gluten-free and are happy that I'm visiting more (was almost reclusive before dx because I felt so unwell and could hardly walk)

Both my parents have bad digestive problems, and I'm convinced my mom has undiagnosed celiac (quite a few symptoms), but refuses to get tested. My dad's thinking about it. Wonder if both my parents have celiac disease....double whammy for me ^_^


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kareng Grand Master

the Univ of Chicago Celiac Center has an easy to read website. In the FAQ sections, you can put in a word like genetics and see that it's inherited, for example. The Living with Celiac part is easy to read too. You might give them the link and they can look when they want.

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IrishHeart Veteran

Another good resource for you (and you parents) to read is the book

Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler.

I highly recommend it. The articles are written by 50 international celiac specialists, has short chapters, covers everything about the disease, how it is Dxed, what's involved in the diet, nutritional advice, how to avoid CC (cross contamination) and so many other topics.

And chapter 10 discusses "Who should be tested". :)

Specialists recommend all first degree relatives of a celiac be tested. (And that means your Mom and Dad).

Best wishes, hon.

  • 2 weeks later...
Juliebove Rising Star

I hope your parents do get it.  Mine never did and never will.  In our case it is not celiac but food intolerances.  My mom has them herself but still eats what she shouldn't and then expects sympathy from us when she gets sick.  She is getting rather senile so that could be part of it.  I was glad when she didn't pitch a fit when I told her she was not allowed to have a margarita.  She was going to order one.  I grew up with her drinking those and then complaining because her throat was closing.  Knowing what I know now, I suspect an allergy there to something.  What?  I don't know.  Then she seemed to be able to drink them for a while.  But then the last time it got so bad I came close to dialing 911 and I just know how well that would have gone over.  Uh huh.  Luckily she just accepted it and didn't put up a fight.

 

My dad has stomach and sinus issues that I think would be helped by a change in diet but he refuses to get tested.  So I gave up.

 

But what they really don't get is the cross contamination thing.  They think that a little bit won't hurt.  So I tried this with them but it didn't work.  They both take prescriptions meds.  I asked me to show me their smallest pill.  They did.  So I said... " Okay.  Why don't you give one of those to Angela?"  My daughter.  They both recoiled in horror that I would even suggest it.  And I said...  "But why not?  It's such a small pill.  It couldn't hurt her.  Right?"  They didn't get the comparison there.

 

My mom also doesn't understand other things.  Like...  She was brought up to think that if you are sick to your stomach, you eat crackers.  Well my daughter was very sick and I had to leave her at their house to get a tire repaired.  My mom kept insisting that she eat crackers to settle her stomach.  I came back to find my daughter in tears and fuming.  She never could get my mom to see that those kind of crackers (wheat ones) would only make her sicker.

 

I tried buying my mom books about food allergies and intolerances.  She wouldn't read them.  Gave them away.  So I finally gave up.

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    • trents
      I would say two things and then I'm done. Many celiacs have been misdiagnosed for years with IBS. Testing for celiac disease requires regular and significant consumption of gluten for weeks/months in order to be valid.
    • RMJ
      Can the rest of your household eat the food with gluten instead of getting rid of it? Can you create one shelf, or partial shelf, for your new food in the pantry, in the fridge and in the cabinets as a start? My husband is not gluten free so we each have a cabinet, and separate shelves in the fridge. If we have to share space the gluten free foods go on the upper shelves so crumbs with gluten can’t fall onto them. Good luck!
    • The Logician
      Thanks for the advice, if my sensitivity comes back i’ll do that but I am 74, in good health for my age and probably have been sensitive to gluten for over 30 years the beginning of which I didn’t even know or suspect It was gluten. I’m seen by my doctor every three months with fasting labs, he knows I avoid gluten and has never suggested I should be concerned. It is quite possible a doctor did those tests on me 30 years ago, I just don’t remember, if they did and they were negative that’s why I wouldn’t remember. If you are interested I’ll keep you posted, but from what i’ve read there is no cure for genetic celiac disease and right now I’ve never felt worse than diarrhea eating wheat or better than I do now eating wheat. If there is no cure I doubt my episode with an antibiotic is the cure which means I don’t have celiac. This antibiotic may be a cure for sensitivity however….i hope.
    • trents
      Diarrhea is a classic symptom of celiac disease and may be the only symptom many people experience until damage to the small bowel lining becomes severe enough to spinoff other health issues. There are many with what we call "silent" celiac disease whose symptoms are so minor or occasional like yours that they blow them off. The only way to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity) is to get tested. I strongly recommend that you request your doctor to run these two blood antibody tests: total IGA and tTG-IGA. The antibiotic seems to have put you into some kind of remission at the present time but that may not last.
    • The Logician
      Not that I can remember but my reaction has never been more than diarrhea and I probably ate a lot of wheat products for years not knowing I was sensitive to it. Dr. never tested me because he attributed it to IBS. 
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