• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
kota

Guide For Family/friends Available?

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,938
    • Total Posts
      943,598
  • Member Statistics

    • Total Members
      67,262
    • Most Online
      3,093

    Newest Member
    JadeYun
    Joined
  • Popular Now

  • Topics

  • Posts

    • Anyone who has ever tried to get an official diagnosis for celiac disease has likely experienced one very unpleasant reality: Having to eat wheat for a couple of weeks to make sure the antibody tests are accurate. Currently celiac diagnosis requires gluten consumption. This can be hard for people who have already given up gluten. View the full article
    • Perhaps automated word pull as JMG suggested. It is irrelevant, but I must comment :  Oddly was entertaining for me today (on a rough day) to read this drivel that included celiac bashing . The celiac dis didn't even hurt, for it was from someone who could not formulate a coherent rational  thought  and shared that publicly. At first I wondered what substance the author was on, then I read further to discover more of this odd piece. The author is all over the place. The piece is also laced with a poorly excuted, back handed attempt to express judgement , anger, and veiled hate in a masked arrogant self subscribed Christian label.  Sure the author  makes a point of shaming the offenders who dropped off the offensive clothes. If the author were perhaps more coherent and a better writer the piece could be borderline offensive or effectively shameful. Alas it is neither.  I however felt sorry  not for the donation facility , the homeless , or the readers, but felt sorry for the author . The author clearly has a lot of self hate, anger, low self esteem, poorly hidden beneath a false facade of uppityness, narcissism, arrogance, while identifying /self labeling as a Christian.  I very rarely get to read a piece where I can play/exercise my brain as lay person couch psychologist . This piece lends itself to that perfectly. I went to the link and read the comments below the article from the real people who express how best to give to those in need, where, and how appropriately. So all was not lost. The right people commented kindly, respectfully, logically, in a helpful guiding way and without hate or shame. So regardless of how admin got this article here - most of us should skip this for the rest of us  bored enough or seeking an odd entertainment piece that does not relate to celiac , let's hope the author gets the help they need as a disgusting gluten-free sandwich has more to offer to society. 😉 Lol  
    • Hi Gemma, Welcome to the very select, exclusive, super secret club of NCGS (or I if you like), where you get all the fun of living the gluten free diet with the added scepticism of half the medical establishment and most of the general public   If you're interested in learning more, there's some good resources collected here:  Feel free to add or just post there if you like.  It's great that the diet is working for you. The emotional side is difficult no doubt. It does get easier, trust me, for you and those around you also. You get better at planning, at coping, at working around it etc. The availability of safe foods and wider knowledge continues to improve year on year.  I've barely been back to Germany, one of my favourite countries, since going gluten-free but take some comfort in the fact that its always harder in a different country with a language barrier as well, but even so there's hope: https://foursquare.com/top-places/berlin/best-places-glutenfree-food https://www.tripadvisor.co.uk/Restaurants-g187323-zfz10992-Berlin.html You maybe need to accept there's a level of preplanning needed now that wasn't there before and if you do that you can still be spontaneous in other ways? Expect some setbacks, at times its ok to cry. Or, er happen to get something in your eye if you're a strapping bloke who should know better  Keep a good supply of nice safe snacks and treats at close hand. In your car/bag/pocket. Eat well before you go out. Have your freezer well stocked with nice safe food and your fridge too. Get to know what easy safe options are available, Are you in the UK? Join Coeliac.org and they'll send you the brilliant guide which will unlock so many safe, cheap foods, also available as an app. And post here, lots of good people with advice and support. Best of luck, Matt  
    • Hi All,  Recently (Nov 2017) I was diagnosed with NCGI by my consultant at hospital, this diagnosis has been after years of testing, colonoscopies, endoscopies and a 2 stone weight loss - it took the weight loss for me to finally be taken seriously by dr's. (I was tested for celiac around a year ago, all clear). I'm looking for advice to help me cope with this diagnosis, albeit I am thrilled that I potentially do not have anything life threatening (still undergoing tests, hosp visits etc.) but on the whole, I'm feeling hopeful that gluten may be the root cause to all my ailments and symptoms.  From diagnosis, I have cut out gluten completely, and apart from the odd slip up or cross contamination incident I have noticed a drastic improvement in my life quality and my time spent inside my bathroom walls has dramatically reduced. (TMI?)  The problem I am currently having is that I feel completely isolated from everyone in my life, I feel that me having to follow this strict diet is putting a burden on loved ones, especially when it comes to travel & eating out. (Was over in Berlin over the weekend, spent a good 5 hours over the weekend crying at being a burden to my BF restricting where we can eat, and also the fact that the majority of places we tried to dine, bar one or two, did not cater to the diet).  I thought I was coping with the diagnosis well, however the crying spell and fed up feeling with it proved I'm not. Does anyone have any good tips they followed and can recommend when they were newly diagnosed?    Xxx
    • Sorghum flour gives me massive cramps and diarrhea within 5 hours. I avoid it like the plague now.  FYI: Krusteaz gluten-free cornbread also has it as an ingredient, just found out the hard way.
  • Upcoming Events