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Guide For Family/friends Available?


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4 replies to this topic

#1 kota

 
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Posted 22 December 2011 - 08:55 AM

Hello,
I haven't posted in quite awhile, and not sure if this question has been posted or not:

Is there a guide (book, website, blog, pamphlet, anything...) written specifically for family and friends about celiac disease/gluten intolerance?

Mostly because of an elimination diet, and also a quesionable biopsy I have been told by both a GI doctor and a dietician to avoid gluten. Even with that, and all the information that I read and share, my husband just does not 'get it'. He is off work this week and next which should be wonderful, but I am suffering as a result of cc issues. Not exactly the way I want to spend Christmas.

He thinks he does enough to keep food separate, but then won't wash his hands between touching his wheat bread & my food. Or, he'll just brush some of the wheat crumbs off the counter and think it's clean (half the time he doesn't even make that useless attempt).

I was thinking if there was something written specifically for family members it may be helpful for him. There is lots of good info out there, but nothing I have found with that target audience. Maybe I am going to have to write it myself? (With a title something like "Help! I Married a Celiac!") :)

Thanks for any help in advance.
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#2 Celtic Queen

 
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Posted 28 December 2011 - 11:22 AM

I don't know about a brochure or flyer, but maybe you could bookmark the sections on cross contamination in a couple of Celiac books. There have been a bunch of threads on here with people recommending different books. Maybe you could check some out of the library and photo copy some sections.

My husband is not a huge reader, so short and to the point works better with him, which is why I recommended copying sections and not trying to make him read the whole book. You also might want to check the Univ. of Chicago and Univ. of Maryland celiac sites to see if they have anything.

Of course writing it yourself is a great idea. You could help tons of other people and their families.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#3 domesticactivist

 
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Posted 28 December 2011 - 12:09 PM

A few of us talked about trying to put something like this together last summer. It was going to be focused on cross contamination stories, with tips interspersed. There is a big thread about it somewhere. I was going to work on it with one other person and put out a call for submissions but no one responded and I dropped the ball. It's still something I'd like to do. Anyone want to collaborate?
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#4 mommyto2kids

 
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Posted 05 January 2012 - 05:53 PM

It is a process for family to learn to care. Do all the cooking if he just doesn't get it. See if you can find another celiac to explain it to him. Sometimes family members just can't take direction from family members. Believe me, I know.
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#5 Organic4Life

 
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Posted 03 February 2012 - 04:41 PM

It is a process for family to learn to care. Do all the cooking if he just doesn't get it. See if you can find another celiac to explain it to him. Sometimes family members just can't take direction from family members. Believe me, I know.

My partner and I opened an Organic Gluten free restaurant in Caldwell nj, On a daily basis we hear our clients telling us the same story, where a family member dosent understand about eating gluten free. We pride ourselves in knowing we are helping many people be able to go out and have a delicious meal and a dessert and also have other family members enjoy the food to. We enjoy talking to our customers, each day we learn something new the kids are the best as they are so honest.
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