How To Deal With Disbelieving Family

[goodwitch]

Hi, I've been on a gluten free diet for 10 months now, and am doing pretty well except for occassionally ingesting something I shouldn't. When this happens, I have pain, gas, bloating, joints aches, and fatigue. My problem is my family. Although my husband is supportive, and see's what it does to me, my children, mother, and siblings, and friends think it's all in my head. I try to just tune them out, but it does hurt my feelings. If I get asked one more time to "just have a bite, it won't hurt you", I will scream. Last night, my 19 year old daughter told me that she thinks it's all in my head, and all it takes is mind over matter. Wish it was that easy! How have you handled people who don't understand? Thanks

Mari

[Guest jhmom]

Hi Mari, I understand your frustration. My children and husband are very supportive and so are most of my friends, especially the ones who understand the disease, but I still hear the same thing as you. When I started getting sick my mom made the same exact comment to me "have the doctors said anything to you about it all being in your head" I wanted to scream! NO it's NOT in my head it's in MY GUT !!!!!

I think sometimes no matter what we say or how much we explain our health problems to our family/friends they are NOT going to understand, either because they don't want to or they just don't want to have to deal with it.

Maybe you should print out some information on the disease and have them read it, because one day your 19 year old may experience the same thing you are! Hang in there , don't let them get you down. Try to pace yourself so that the fatigue does not get overwhelming and of course come here often to vent or get support, that's what we are here for

Also have you checked into local support groups in your area? Here is a link from this site to check your State

US Support Groups

Take care and God Bless

[plantime]

Hi Mari!

I know that feeling! At 19, kids don't know very much. Does she realize that she might develop celiac disease later? My dad and siblings never argue about me being gluten-free, they saw how mom died. I did have a "friend" who told me that there is no such thing as "allergies" and "intolerances" and that my whole problem was not eating enough whole wheat! I just decided that she really didn't care about me, and so I don't talk to her. You can't do that with family, though. Just stay on the gluten-free diet, and don't worry about what they say. If they do not have it, then they are truly blessed!

[Dwight Senne]

Mari,

Well, it's a little harder when it's family. As for friends who behave this way, I just discard them. Period. I figure friends who are that ignorant and unsupportive are not worth having!

This puts me in mind of one particular former friend who, upon learning of my diagnosis, took the same attitude as your daughter. This was after a 5 minute explanation from me about what this disease and the diet were all about (because of course, she had never heard of it). She made the comment: "Oh, you can have a little bit - it won't hurt you"! To which I responded: "Gee, for someone who knew nothing about this disease 5 minutes ago, you sure are have become an authority fast"!

The best approach I have found is to be firm. It is possible that some people take that approach with you because you let them. You have to stand up for yourself and let them know that you will not tolerate that sort of response from them.

I also agree with jhmom about printing out information for them to read.

[carleyq]

I'm starting to get increasingly frusstraited with this non gluten free intollerant intollerant world ...ha

I am 20 and go to college, when I accidently eat something i shouldn't (which happens more than it should) my life stops until i feel better again. I get the feeling my roomate and friends (and teachers) think i'm making it all up. When in reality I'm the least person in the world to normally complain about anything. I feel really terrible when I have to miss class and turn in assignments late...explaining to my professors that it was because i accidently at something i can't? It takes a couple days for me to completely recover. But I cannot afford the time. I'm having a really hard time dealing with this, and the lack of support/understanding.

[goodwitch]

Thank you all for responding. My husband had a talk with my daughter, and I think at the very least, she won't be making any more rude comments. I like the idea of printing some facts about gluten intolerance...the next time my sister tells me I just need to do a body cleanse or take some herb, I'll have a response for her !

Mari

[guppymom]

A few nights ago my husband made one of those comments, those "i can't believe that just a little bit like that would hurt" comments. And after I had bragged about how good he's been. Must have had his radar one. Anyway,he said that it was never bad like that before, how come all of a sudden, and i reminded him about how much pain i had been in constantly. He did remember after that brief reminder, and then i asked him if it took someone with a flower allergy putting their whole face in a bunch of flowers to trigger a reaction, or if all it took was one pollen particle to begin the process...he agreed that for a person with a sensitivity, it only took a microscopic item to cause a problem. I rested my case AFTER I pointed out that this is not an allergy, but that the reaction is actually my body attacking itself when it senses the gluten protein, no matter how small the amount.

It reminds me of trying to accurately describe labor to someone who's never experienced it(sorry, guys, it's just such a vivid female thing).

And I do find that I have to force a tough shell or I want to cry alot. People can be really thoughtless and lacking in compassion.

[plantime]

My husband made one of those "I can't believe..." comments on the phone, but he followed it with "Wow, even just a tiny bit does that much damage!" His tone of voice told me he had realized something significant. I just wish others would!

[Captain Obvious]

Hey,

I know what you're going through - hang in there. One of the most difficult aspects of this disease is the fact that it's often minimized, misunderstood, and misrepresented by the various communities we look to for support including family, friends, work, and medical to name a few. Keep in mind that this isn't done malaciously, these folks just can't grasp the idea that something they eat everyday is poisonous to certain people. Some things that may help is to provide them with real information, factual medical articles, etc., on the disease and the very serious diseases it can lead to if your diet is not strictly followed (this might take years and many articles, frustration, rejection, etc., but don't give up - just keep giving them real information). These articles can be located here on this website and in various other locations - library, newspapers, etc. Also, let folks know that Eating is Not just Physiological, it is a means by which we as humans seek comfort and socialization and that having their support is vital to you to maintain both your physical and mental health. If this doesn't work, tell them that eating gluten for you is like them eating rat poison - this isn't so far from the truth. Education and empathy development are the keys and they may take time - hang in there, others like you are out there. Capt. Obvious

[andyc]

My husband thinks that since I have been living with this problem for 50 years that another 50 years won't hurt. I tried to get him to read some information but he isn't interested. I want to get my daughter tested but he doesn't want her to go through a blood test. He doesn't understand that there could be damage - long term damage - He constantly offers me pasta and bread - dosen't ever remember that I can't have it.

I basically don't mention to anyone that I have this problem I just decline from eating anythng that I shouldn't. i don't say why - it is even a little boring to me. I find that there are a log tof things that I can eat and I cook almost every night. If my family wants pasta I just don't eat.

I find something else.

[Guest Blackheartedwolf]

It annoys me that so many people don't realize how serious celiac disease is. My husband and mother know, because they have seen how it affects me. My husband was starting to get to the point where everytime he saw me run for the bathroom, he would chant "diarrhea, cha cha cha" (trying to lighten things up.)

I have found it helpful to give people statistics when they scoff at the dangers of cross-contamination, and say things like "well you can cheat once in awhile."

I let them know that Celiacs who keep ingesting gluten have a 40% or more higher chance of getting cancer in the bowel, and that Celiacs that cheat by eating one meal with gluten once a year increase their death rate 6 times! One meal a year eating pizza is not worth increasing your death rate 6 times. Once that sinks in, people are usually more understanding.

[guppymom]

"I let them know that Celiacs who keep ingesting gluten have a 40% or more higher chance of getting cancer in the bowel, and that Celiacs that cheat by eating one meal with gluten once a year increase their death rate 6 times! One meal a year eating pizza is not worth increasing your death rate 6 times. Once that sinks in, people are usually more understanding."

Very well put. I started out telling people about that and have forgotten how effective it is. I'm going to start doing that again.

Teresa

[gf4life]

Keep in mind that this isn't done malaciously, these folks just can't grasp the idea that something they eat everyday is poisonous to certain people.

Isn't that the truth. I was at the library the other day and was going through the books they had for sale. One lady was looking at an Atkin's diet book, and they all started talking about bread, pasta, cakes and such. One guys said, "I'd die if I had to give up my bread and cakes." Now I'm sitting there thinking to myself I could die if I don't give them up! And what a slow painful death that would be. it they only knew...

I have the problem with my husband being tolerant of me and the kids being gluten intolerant, but he is in denial that he may have it. He won't get tested becuase he doesn't want to have to give up the foods he loves. In the mean time he offers us all bites of the bread, pasta, pizza, and other gluten goodies he is eating. He knows I am trying to get the kids completely gluten-free, yet he offered my daughter a bite of snack cake yesterday and before I could stop him, she was eating it. She is 4 years old! She knows about gluten and the fact that it hurts her belly, but she will eat whatever mom and dad give her. So if dad offers food, it must be okay! Today I found her eating some of the dry ramen noodles(a favorite pre-gluten-free snack of my kids) that my husband was supposed to put on a high shelf out of view. I am getting very frustrated, since he doesn't seem to be taking this very seriously.

I have talked to him about gluten intolerance and being gluten free for two years, and yet he seems clueless. He doesn't seem to think the cancer threat is real and he doesn't think the contamination issues are real. He thinks I am just being paranoid. Any suggestions on what I can do to get through to him? I have done my best to get all the gluten out of the house, yet he buys his own and cooks his own gluten meals, so we have two sets of cookware and utensils going. I've had to toss a few of my utensils out because I will find them soaking in the sink with a bunch of gluten dishes! I can't let him keep the contaminated ones, since they are black and his are light blue and white. If he starts using black ones, then I won't be able to tell the "good" from the "bad". I have printed out tons of great articles and studies related to celiac and gluten intolerance, and he has read some of them, but it doesn't seem to stick. What can I do??

Mariann

[debmidge]

Gosh! If I had a dollar for everytime someone told me that my husband's health problem was all in his head, I'd be a millionaire! Even our minister took me aside and asked me if he had a psychological evaluation as to why he couldn't work (his celiac is that bad as it's been untreated for almost 3 decades). My parents thought he had been just "coasting". People are cruel, insensitive unless it's about a politically correct disease llike AIDS, people are disbelieving until they get something (& sometimes they are still mean, because they are self-centered). People are ignorant but yet they don't want to learn anything more because it will make them responsible to be understanding. If doctors are still stupid about celiac, what makes us think that the "masses" are any better? We should have a campaign to inform people about this disease. I was even thinking about making up my own one page flyer and giving it out at the supermarket. The info would be what is celiac, how a person gets it and what the treatment is for it. I sometimes wonder if medical science will come to the conclusion that most intestinal cancers are due to untreated celiac. Will that be the headlines in the next year or so? Will only then will THEY get it?!

[Captain Obvious]

Yes, denial is a powerful force, and some people will never face the truth. My family has minimized the disease for years, but now it finally seems like some of them are getting it - this gives me hope. But, I've got family members, too, that I suspect have the disease, but refuse to be tested.

The good news is that medical science is catching up. It's all about our voices and the information that we continue to convey to others everyday. It can be very frustrating. Any of you Star Trek fans? I've often thought it would be great to do the Vulcan Mind Meld with an unbeliever during one of my intense episodes - that sure would floor them, eh?

[andyc]

Just another day when my husband offered me bread and when I told him that I couldn't eat it because it made me sick he said that he never saw me sick. Even when I don't bring it up and just pass on eating things I shouldn't I have to hear that what I have isn't really a problem

I am not asking for anyone to feel sorry for me - not even complaining about the food. It seems to bother my husband more than me

[Laura]

I have friends who can't remember what I can't eat. Some of them just canNOT remember what has gluten in it and what doesn't. And I don't mean they can't remember that salad dressing or something might not be gluten-free. I mean things like pizza. Drives me nuts. I've actually started mentally categorizing my friends by who can remember and who can't. There are my friends who held a gluten-free party for me a couple months after my diagnosis, and the one who beats me to the punch questioning waiters in restaurants. Then there are the ones who want to order pizza or stop at Dunkin' Donuts. Oh well. I'll get through to them all eventually.

Then there's my mom, who always remembers I can't have gluten, but it still bothers her more than it does me. She feels so bad about it -- for months after my diagnosis she felt guilty every time she had toast at breakfast -- but that's good because she's a fabulous cook and it's motivated her to work hard on figuring out good recipes for me. Every time I visit my parents we make some new stuff and she sends me home with a cooler full of homemade gnocchi, pumpkin bread, tamale pie, stuff like that. But I think she needs to get tested and she won't. So sometimes she tries to deny that some of the symptoms I had before I was diagnosed are related, because she doesn't want to believe she might be having symptoms that she doesn't know about. Like, she wants to think that the fact that I was depressive before I was diagnosed is unrelated to the fact that since I've been gluten-free I've stopped getting depressed.

[zippyten]

Boy, have I experienced a lot of this stuff in the four weeks I've been gluten-free. Some people I would've never expected to be sympathetic are very much so; others who I thought were good friends have been dismissive or disinterested to the point of callousness ("oh, it won't be so bad, giving up gluten" or "well, be grateful it's not something much worse"). I also find some people won't believe something unless they get it from a doctor. So with those people, I emphasize "the doctor has put me on a very strict gluten-free diet" and "my doctor says even a little bit can damage my intestines and increase my health risks for cancer and other things." This seems to drive the point home that it isn't me deciding I'm a wee bit allergic to wheat, that it's a serious illness.

For people such as spouses and parents who are less than ideally supportive at times, I am trying to put myself in their position and realize it's an adjustment for them as well (and for some of them, has implications for their own health if they are resisting getting tested, or having their own children tested). That's where the denial comes from. For some people it is just too upsetting or uncomfortable to face unpleasant truths so they pretend they don't exist (that's where the "it's all in your head" and "you must be exaggerating" and "you don't seem to be sick" stuff comes from).

With people who need a longer time to accept what we are living with, my only suggestion is patience and a little backing off. It is too exhausting to expend energy trying to convince someone who is not ready to be convinced. But, many people do respond well to "proof." In my case, my husband turned out to be very supportive of my diet and -- and I think that's mostly because my bloodwork showed a positive (though weak) for celiac disease and the doctor counseled trying the diet for 3 months. He is a very pragmatic guy, and I'm sure the numbers, and the doctor's diagnosis, won him over. I also think it's one of those diseases that is going to enter the mainstream consciousness big time in the next few years (the way colon cancer, ADD, and autism have already done) and that will help all of us in terms of public awareness and education.

Ellen