How Do I Break The News?

[haleym]

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?

[Gemini]

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?

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!

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

[jststric]

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!!

[haleym]

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!

[DJCannon]

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.

[momxyz]

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 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!

[Ahorsesoul]

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.

[Korwyn]

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?

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.

[ciavyn]

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. 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.

[Rothane]

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.

[Jennifer2]

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.

[iffy]

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.