• 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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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

How Do I Break The News?
0

Rate this topic

12 posts in this topic

Recommended Posts

Ive recently discovered that after a long time of crazy bowel symptoms, I eliminated gluten and feel WAY BETTER! Was tested for celiac a while ago and it was a negative blood test, but I am strongly suspect that it was a false negative. Im going to call my ARNP today and tell her what Ive found out, but...

I am REALLY self conscious about telling my family and friends about this... not ashamed but I just dont want them to feel that I am going to be a burden for them when I come visit, etc. I am single and live alone so its pretty easy for me when on my own, but...!!! Have you found any way of approaching this that has been effective to you when dealing with family and friends? :(:huh:;):lol:

Share this post


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


Ive recently discovered that after a long time of crazy bowel symptoms, I eliminated gluten and feel WAY BETTER! Was tested for celiac a while ago and it was a negative blood test, but I am strongly suspect that it was a false negative. Im going to call my ARNP today and tell her what Ive found out, but...

I am REALLY self conscious about telling my family and friends about this... not ashamed but I just dont want them to feel that I am going to be a burden for them when I come visit, etc. I am single and live alone so its pretty easy for me when on my own, but...!!! Have you found any way of approaching this that has been effective to you when dealing with family and friends? :(:huh:;):lol:

Why are you so worried about what others will feel or think? Just tell them the truth without sounding like a victim and they won't treat you like one...or they shouldn't! If they really love you and are concerned for your welfare, it won't matter that you cannot have gluten. Actually, my friends have been super-supportive while my family hasn't been. That is common, because by acknowledging my Celiac Disease, the family realized they may have it also and God forbid anyone should make them go there. ;) They won't even begin to provide anything for me to eat which is safe so I don't visit them that often and when I do, I take my own food. Makes a mighty fine excuse when you don't want the company of non-supportive people! :P

Good on you for figuring out your problem and good luck with everything!

  • Upvote 1

Share this post


Link to post
Share on other sites

you just do the best you can with friends. I try to be as non-assuming as I can be when invited over to others' house. If I can, I take something to add to the occasion...always something I can have myself. I also eat before going so I'm not starving all evening. If you go out.....you just learn how to order.

I had to spend several weeks at my parents' this past summer and that's been the only time they've had to deal with my issues, as I've only been affected for just over 3 yrs. My mother is elderly and frustrated by it all and just doesn't really understand. But she did finally conceed that I needed to kinda take care of myself. I would shop for myself and fix my own meals. Being away from home and not my own things or kitchen I did it as frugally and time-saving as I could so as not to disturb the routine they are used to. Consequently I did lose quite a bit of weight since I didn't buy ALL the alternative things I'm used to having in my own pantry. I ate alot of salad and chicken. And apples. I'm beginning to think I need to pretend I need to eat that way again and get that weight back off that came back once I got home!! :P

  • Upvote 1

Share this post


Link to post
Share on other sites

Well I told my folks and they were **HAPPY FOR ME** that I found out what was bothering my tummy all this time! Thanks for the support, guys!

  • Upvote 1

Share this post


Link to post
Share on other sites
Well I told my folks and they were **HAPPY FOR ME** that I found out what was bothering my tummy all this time! Thanks for the support, guys!

That is great, I'm of the opinion that most parents would be more hurt to find a child had been hiding a challenge like this then they will when you decline that pie on Thanksgiving.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


I understand the trepidation you are feeling because I have not disclosed my recent gluten free status with very many people either. My family in the local area consists of grandma ( my mother in law) and my husband and my daughter (also gluten free). They are all "in" on this and wonderfully so.

At work I've only confided in two people. As far as my family "from away", only my sister and one sister in law (SIL's daughter also affected.)

This past summer I went to a family gathering and glutened myself because I felt awkard about explaining and didn't want to either draw attention to myself or turn down their hospitatlity. I do not have an "official" diagnosis. My evidence is A) response to the diet and B) what happened after I ate their pasta....

at some point - the next time I travel to be with them again - I will have to explain. I think some will be receptive and some will think this is all slightly kooky but oh well. I say that because I know what the reaction of some family members were when my SIL brought special foods for my niece to family gatherings. Shame to say, I was one of them. I think seeing these reactions - and having them myself - is the incentive for my being a more or less "in the closet" gluten intolerant person, up til now.

So I am still learning about dealing with the social aspects of things. LIke today at work, "come join us for X's birthday at 2pm! Double chocolate cake!" As fate would have it, an immediate issue prevented me from taking that break, not at all manufactured. But this won't be the last time.... sigh.

However I will offer up a sign of encouragement. It happened last night and its making me think I shouldn't be so reticient about telling people. Even tho my mother in law has been pretty supportive, we haven't always had the best relationship. Pretty typical DIL - MIL conflict stuff; in our case it was my approach to child rearing. Now that the kids are 17 and 22, and she is pleased with the outcome, all those issues have been laid to rest. Animosity has been replaced with real affection on both sides of the street. She was very sweet this past summer when I explained why I was trying the gluten free diet for myself and my daughter... she was willing to modify some of her recipes (as a widow, one of her joys in life is cooking for us.) I would make gluten free bread crumbs for her, and then she would use those instead of the old Progresso. Oh, and then she found the gluten free Betty Crocker line... (Grandma, none of us really need more baked goods... gluten or not). OH well, it made her happy, and after the family had a sampling I took the remains to work, where they got devoured. (no one knew they were gluten free) And now when she grocery shops, she is checking out all the gluten free options.

Last night we had this amazing conversation. I had given her a sample of brown rice pasta to try. She's had it awhile and hasn't tried it yet. But she has been thinking back and now starting to "connect the dots". Grandma is a stomache cancer survivor - diagnosed in 1992 when my daughter was just 1 year old. Being a survivor of that is a pretty amazing statistic.... She did have 2/3 of her stomache removed, and had to learn how to eat all over again as a result. Maintaining a healthy weight is a real challenge for her.

She pretty much tries to eat thru the day. And for along time she was starting her day with cream of wheat. She was feeling some vague discomfort, which she couldn't pin on anything specific for awhile. Then she switched her breakfast to eggs, and that feeling went away....

Cut to the chase, MIL is now wondering if gluten has not been her problem for a long, long time. She recounted to my how when she first got married (into a very Italian family) she remembered not feeling well after meals at her inlaws. It was kind of vague and she was never able to pinpoint it to anything specific. She just frequently did not feel well after eating.

So she is saying hmmmm... which is pretty amazing if you knew her. At any rate she is going to try the brown rice pasta sometime this week.

point of my story (and I'm preaching to myself as much as to anyone else) don't be reluctant to tell your family and friends. Don't assume their reactions. You never know!

  • Upvote 1

Share this post


Link to post
Share on other sites

When I first tell people (and only tell them if asked) I say that "gluten makes me very sick and it's worth my health to avoid".

Now if someone is really interested in why I'm gluten free, I will tell them about how this disease is on the rise and that many people could be helped by eating gluten free. I give them a quick run down on the symptoms and how doctors are not familiar with the disease. And I tell them how hard it is to avoid gluten with examples.

If pressed by people who think it's just silly for me to avoid gluten and I should just eat what they made I can go into vivid description of explosive diarrhea splattering all over the toilet if I made it that far and it's not in my pants instead, how my gut feels like it is twisting together causing extreme pain ending with me unable to get off the bathroom floor and a possible trip to the hospital.

If after that they still are pressing me to eat their gluten items I tell them I will if they will let me knife them in the gut first. Never had anyone press me after that statement.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


Ive recently discovered that after a long time of crazy bowel symptoms, I eliminated gluten and feel WAY BETTER! Was tested for celiac a while ago and it was a negative blood test, but I am strongly suspect that it was a false negative. Im going to call my ARNP today and tell her what Ive found out, but...

I am REALLY self conscious about telling my family and friends about this... not ashamed but I just dont want them to feel that I am going to be a burden for them when I come visit, etc. I am single and live alone so its pretty easy for me when on my own, but...!!! Have you found any way of approaching this that has been effective to you when dealing with family and friends? :(:huh:;):lol:

I have told all of my family members, and many of my co-workers! Because of that two immediate family members (of 10) have been diagnosed with celiac and one was already diagnosed very intolerant of gluten, casein, soy, and lactose but none of us knew about it (she never talked about it). Two other co-workers have been tested, three are on gluten-free diets and are seeing tremendous improvements in their health. I wrote up an email to all of my family members, and started off with "I have Celiac disease!", and crash background on celiac disease and my health since I was 20 (20 years worth). Turns out that my Dad, and at least FOUR of my siblings have had horrible health problems that I didn't know about and they never talked about to anyone else! My grandmother died in 1981 of 'non-specific gastro-intestinal complications'. Turns out that my Dad has a double copy of DQ8, and my mom has at least DQ2 (only my Dad and I have had the genetic testing done). I have both genes.

Telling my family and friends has been a wonderful thing, and I have had several people I work with and know who have seen an improvement in their health because they have started asking question about their own issues.

If you have it (either celiac disease or Gluten Intolerance) statistically there is a very high probability that at some of your immediate family members may have it as well.

  • Upvote 1

Share this post


Link to post
Share on other sites

I gotta throw in here: how would it be any different if you had diabetes, or cancer? Trust me - been through the cancer scare...much, much worse than saying I have issues with gluten. At the end of the day, what matters is that you are healthier. If those around you don't appreciate your issues, well, who cares? You can love people who don't understand you, and still maintain your health and boundaries.

My point: you have to care about yourself MORE than you care about whether or not they accept you. I do NOT have a supportive family. They think I'm nuts, because I won't get an official diagnosis. Of course, no one's offering to pay for the tests, either. :P And I'm happy with the way my body has responded to the food trial I'm doing. So be it.

Take your own dishes of food to events, or eat before and just munch anything that is safe while you are someone's house. Take chips and dip, or hummus and celery, and fill up on that. No matter what, you will enjoy your time with others. We do too much around food, and not enough around those that matter.

You deserve to feel healthy, and to do what you need to to remain happy and feeling good. Perhaps of a few them need to see that lesson in action; maybe they will start doing them same for themselves.

  • Upvote 1

Share this post


Link to post
Share on other sites

We were up to my family's house for the obligatory holiday visit this past weekend, our first holiday since my husband was diagnosed. Everyone in my family was mostly curious about gluten-free living and what celiac disease was and all that. My sister gave us a big basket of goodies, all of which were gluten-free; she said she'd had a lot of fun shopping in the local stores and natural food markets putting it together.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


Most people I've told have been very supportive of it. Most didn't know I was having problems. Of course I get a few people that don't understand that I can't just have a little bit "since I've been eating it all my life" or that don't understand that no, I can't just scrape off the crust and eat the ice cream part of the ice cream cake....

When it comes to people that might actually cook for me, I've explained the basics to them, but spend more time on what I CAN eat. I find it seems more daunting if you explain all the details of what you can't eat and why not (ie: hidden gluten, cc, etc..) than if you explain what you can eat.

  • Upvote 1

Share this post


Link to post
Share on other sites

Great advice given. After I diagnosed myself in early Dec. and told the family and then visited them over the holidays, I brought my own stuff, not wanting to be a burden on them last-minute. They were great, interested, and remembering a lot of indications I had missed (like, remember when we went to the big market and I told you I needed to know in advance where the nearest bathroom was; and, if I suddenly disappear, don't worry, I'm in a bathroom somewhere; and on and on.) Also, I was amazed at how many other people they knew who had this too. At my daughter's Christmas dinner, there was a savvy 11-year-old celiac ... it was strange, and kind of sad, to be chatting about hydrolyzed protein with an 11 year old on Christmas Day.

In the case of my kids and siblings, I'm talking freely and telling them to look into celiac disease if they have any of these unexplained symptoms, given the genetic component here.

iffy

Hi haleym,

Family are an easy fix. But i would spend some time in educating them about how it is a 'real disease'. Another forum member was down playing the seriousness of it 'its not like you have cancer' but you might like to make people who give you this comment - that a celiac eating gluten can raise their risk of gaining bowel cancer by up to 100 fold. This is a serious, and annoying condition, that has been taken too lightly in the press and sometimes by celiacs at restaurants etc.

Before I heard of the term celiac, the whole plight of celiacs meant nothing to me. Even after my first brush with it, it meant little to me until I read a lot of the research and the myriad of symptoms, often life threatening that can be associated with it. You dont need to make a slide show, but depending on how your family usually respond, you may need to get the message across with a few print outs etc.

When we visit my father in laws place, we have found the best way to help them and ourselves is to provide them with gluten free flour, chips, bread or anything else they can store in their cupboard or freezer. That way it saves them scouring the supermarkets and they find it easy to do things like make two different gravy mixes (gluten full and gluten free) etc.

Good luck, mostly it just takes a bit of organization. ;)

  • Upvote 1

Share this post


Link to post
Share on other sites

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
      108,146
    • Total Posts
      939,919
  • Member Statistics

    • Total Members
      66,132
    • Most Online
      3,093

    Newest Member
    Whhyyy
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yes I eliminated high glycemic foods. Eating only small amounts of carbs. No fruits, added sugars, starchy grains. Eating lots of fibrous veggies. Eating olive oil, as I don’t seem to tolerate the saturated fats or MCT oil. Allergic to nuts and seeds unfortunately.
    • Just wondering if you have an update at all? Going through the same thing at the the moment with my type 1 14 yr old. I would be interested to know what your gi said and how your daughters doing now? xx
    • Please check the date on post, you just responded and tried talking to a person from 7 years ago. On consideration to the subject Poatoes are a huge flare factor for my UC and cause my blood sugar to sky rocket...I am not even diabetic but for some reason potatoes (hash browns) that I tried a few months ago with some eggs shot it up over 400. not even a control test with table sugar managed that.
    • Have you tried eliminating high glycemic foods? Fruits, added sugars, starchy grains, potatoes. etc? Also adding in slow digesting fibers and fats can prevent insulin spikes, MCT oil is also known to help and protein. Many find consuming nuts and seeds higher in fiber early on in the meal or before a meal can slow down insulin responses and prevent spikes. I always tend to eat a hand full of whole shell pumpkin seeds, hemp seeds, cocoa nibs, etc. while fixing my food, this gets me starting to feel fuller sooner, and seems to help in over all down the road. I know I had some references somewhere to these. I know I read somewhere about the antioxidants in in whole shell seeds like pumpkin and hemp also helped the body regulate insulin levels.
    • Dear AWOL Cast Iron Stomach, Your husband is right bread is bad for you. Of course it's more than bread and gluten, until now it was amateur hour trying to self diagnose and tame this "lion". However they let you down. You slipped through the cracks over and over again it is not your fault your not the Dr. You made mistakes and errors acting like a celiac , not knowing for sure you were, and not feeling like you could fully claim to be or reach out for support . Now you know your husband was closer than any Dr. up until now to determine your illness. Now something is in your record, now hopefully you will be dismissed less,respected more, maybe they will realize its an actual condition going on- not all in your head. Will they? Who knows! Do you care? This is now official, now explained, you not only have to give up gluten, but milk, and corn. In fact give up 98% of processed anything. The cluster of lifetime symptoms were not  "just you", "in your head", "you are not a difficult patient", "when the Dr or nurse looks at you like a nut job you don't have to feel the dismissiveness and condescension. It's an illness and nothing to be shameful of  what is shameful is they and their colleagues missed you failed you. In fact being missed for 4 decades is unjust to you. You were missed time and time again from age 5 to 43, decade after decade after decade, symptom after symptom. It's not that you didn't try from the 5 year old begging to go to the Dr, to the 20 going to the hospital again for another bout of gastroenteritis hoping to get an IV, to the thirty year old saying something is wrong why is this happening, to the forty something a restaurant fed me gluten when I asked for gluten-free, I have been gluten free for 3 1/2 years ,  I have more symptoms and pain than before . I felt so good for those gluten-free years- please help me-make it stop. So many things explained it makes you experience a range of emotions. Grateful: Relief and gratefulness someone finally agreed to send you to someone to test you. She saw past the other diagnosis' and the albatross IBS diagnosis. All the ages and stages of symptoms are explained they all fit. Everyone of them! Someone else also has had them. You are not alone. Read the forum-you fit like a glove. Anger: Anger for the way you have been treated by the medical community, family, some ex boyfriends, friends and coworkers. Anger for the length of time you endured this. Hurt: Hurt for the times people said unkind things to you when you were symptomatic or flaring . you are experiencing symptoms that change your body people are rude to congratulate you on a "pregnancy" you didn't announce or ask why you are not slim when you hardly eat. you are not over emotional -  you are suffering from neuro symptoms, you are not making this up for attention Sad & Guilty: Can I work again? Do I want to work again? What kind of work can I do now? Can I find a job and work PT from home? You didn't envision this your husband having to be sole bread winner now what? I am overwhelmed thinking about this-stop? You now have closure and know how and why you lost your first pregnancy. You now know why you were high risk, complications,  with your children in Pregnancy & Delivery that they couldn't be explained back then It explains why in pregnancy you lost weight and why your morning sickness was extreme and seemed to last longer than anyone you knew,  that your Puppp rash was likely misdiagnosed DH It is not your fault none of it. Please forgive yourself for what you did not know. Your children forgive you. Believe them when they say its not your fault. You can cry, but you can no longer blame yourself. You are a good mother just one with an illness your children will learn to accept. Withdrawn: Why are you withdrawing from your husband? Should you ask him if he wants a divorce? Should you push him away? You didn't know before marriage what was happening you knew something autoimmune was brewing shortly after, but nothing showed on tests. Was this unfair to do to him? Doesn't he deserve someone better? Someone well? Now you can't retire and travel the world as society retirement cliché dictates. Can you afford this illness ? How will this financially impact your spouse, your family?. Why did you do this to this poor man? You are so selfish, you wanted marriage and kids, but was this fair to them? Don't your kids deserve a healthier mom? How will this impact them? Oh my gosh are they going to get this too? Will they grow to resent you? Your illness and diet has taken over their lives! Oh gosh no one say hi to me-please. I hate people and I am too sick to pretend and be fake friendly today. I don't want to tell you I am ill. I don't want to talk about this. I have to absorb this. I hate you people for being healthy. Don't tell me I don't look well. I will snap, I don't want to snap, I am irritable ,and don't feel well. Just keep giving off the unapproachable vibe keep them away.  Am I strong enough to do this? Acceptance: Calm down the inflammation, lack of nutrients, and GI damage is messing with your head. Your husband said for better for worse. Your kids have no choice you are their mother and you are a good mom -you have always been, always will be even on your worst day. If they get this they will be ok. You are strong enough to do this you are just ill and most importantly you must remain here in case they get this so you can guide them and be there for them. Got it? Go on the forum you are not alone it will be ok. You will get this lion back in the cage and manage it. It will be ok. If you can't travel in retirement one day you will find other hobbies or things to occupy your time. He's not going to leave you over this. If he does it will be ok. You'll manage-you always do. You have an answer, you knew it was coming, keep reading, learning, seeking support, and one day it will all work out. You will process all this and will be at peace-until then keep going and above all AVOID GLUTEN!    
  • Upcoming Events