How Do Your Loved Ones Deal With Your Celiac?

[Laura]

I'm thinking about this question of how friends and family respond to a diagnosis of celiac disease and a gluten-free diet largely in response to Mo92109's topic on her friend who tells her she's a hypochondriac. Since we all have a lot of people in our lives, we experience many different responses, and I've often tried categorizing them in my mind, so that maybe I'll be better able to deal with the difficult ones, because I will know immediately what I'm facing and what's worked and hasn't. But I'm lucky, because no one has been really bad to me. But even so there have been challenges, and I know they've been worse for other people.

Probably my most persistent problem is with a few friends who just can't remember what I can't eat. Like, in principle they remember I can't eat gluten. But they can't remember what it's in - and I don't mean they can't remember that modified food starch can be a problem but modified corn starch is ok, I mean bigger things - so they always suggest we go for donuts or something. And I say "I can't" and they go "d'oh!" They're sorry about it, but that doesn't mean it's not going to happen again. Since these are pretty smart people who eat with me quite a bit, I sort of feel like it's not simple forgetfulness, like they subconsciously don't want to remember. And it puts me in a position of having to turn down a lot of stuff, so I end up feeling more like I'm dragging things down than I do with other friends.

Then I have a couple of friends who get embarrassed when I ask questions in restaurants. They try to explain to the waiters why I'm asking these questions, and it feels like they're apologizing for my rudeness. But I promise, I'm softspoken with waiters - it takes a lot of courage for me to ask even minimal questions. So it's really their issues.

Then there's my mom. This is the woman who, when I was diagnosed, ordered a stack of gluten-free cookbooks and started experimenting on foods I could eat. Then later confessed to me she hadn't really believed the diagnosis, or had hoped the doctor would change her mind. And she's still great about cooking for me when I'm home. She even thinks cornbread is better made with rice flour! (She feels it has a "more tender crumb.") BUT when I first started really believing the diagnosis was right and that a gluten-free diet would make a difference for me, she questioned every physical change I attributed to it. I'm going, "Ma, it's a fact that I haven't had a cold in 5 months and the last time I went that long healthy was when I was 16." The big one she couldn't accept for the longest time was that I was happier, less depressed. I think because she couldn't accept that I had been depressed and hiding it from her, but I don't really know. She didn't believe me until she read it in a newspaper article that depression could be a symptom. Even now, 3 years later, if I'm like "I was glutened" she wants to know how I know. "I have D," I say. She replies "Well, sometimes everyone does. It doesn't have to be gluten." Now, this is true, and I'm like everyone else in this regard. Luckily, I've anticipated this response, and I say "yes, but gluten D has a different consistency. It's like this" and I proceed to give her a genuinely grossly detailed description of it, and of the times I've had it just like that and how they were always after a suspicious meal. So now she's convinced of that.

I know she just wants me to be happy - she doesn't want to think I wasn't happy before diagnosis, and that unhappiness dominates her thinking when I say I'm happy now. She doesn't want to have to reinterpret her memory of a good 9 years of my life, to think of me as an unhealthy unhappy person. She doesn't want D to be from gluten because that means this disease is impinging on my life, that it's an ongoing factor rather than something I've figured out and have 100% under control. But she's my mom! When she questions my judgment of these things, it's hard for me. I mean, the reason I never told her I was depressed was because I didn't want to make her unhappy or worried. And I continue to hate anything that does that, so my main problem with celiac may well be that it makes her unhappy.

At the other end are the people who are always coming up with new ways to be wonderful. Like my officemate when I was first diagnosed who was the first person to bring me a box of Pamela's cookies and say "if these aren't good, just throw them away, but I saw them at the store and thought of you." Like my current housemate, who has never given me any kind of CC issue even in a really small kitchen, who tried to order me a Mr. Ritts cake for my birthday (they were on vacation, so she gave me a raincheck), who tries to avoid ordering pizza if I'm in town or checks that I have a Risotteria pizza in the freezer so I won't get jealous. Or like my dad, who when people ask me about being diagnosed and what were my symptoms will chime in when I'm talking about how often I was sick and say things like "and I thought she was just being a little bit of a wimp" (I almost never felt that he thought that at the time) and then he'll continue "but by now she's earned a lot of trust in her sense of what's going on with her body." Or the people at a recent job interview who took me to the grocery store in their town to show that if I went there (which I will be), I could find food. There really are a lot of amazing people in my life, and I'm so blessed.

Another question I have is, do you find you have an easier time with people you've met since you were diagnosed? Because for them you've always been this way, so it just is, rather than being something to be questioned? I think I see that. But I'm also always ready to meet someone who can't quite handle it, and I want to know how you all have handled that experience.

[JenAnderson]

Well....since we're in the Army, we move a lot and there are "friends" that we don't see anymore. Those friends thought I was a hypochondriac and refused to acknowledge that there was a problem. Needless to say, I didn't eat at their house all that often.

The friends that I have now are awesome. They go to great lengths to make sure that there is something for me to eat that is not CC and is totally gluten free. I have to admit that there might be some truth to the thought of new and old friends. The new friends are understanding, and the old ones aren't.

My family is divided. Most of them are in denial and all of them show significant symptoms of having Celiac. We're all predominately Irish (I think there's a German relative in there somewhere..), so that's how I got DX'd. The diet helped, sp I stayed on it. The part of my family that's understanding about me still will not get tested even though they know they have some BIG symptoms.

My mother and father have symptoms but they refuse to be tested and refuse to acknowledge that I have a problem. In fact, they flaunt that they can eat what I can't. They insist that we go out to eat, then want to go somewhere that I can't find any food.

I don't go visit family very often, and the ones that understand I see alot, and then again my "new" friends are close by, so I can't complain.

[CarlaB]

My dad has been very supportive. He was really worried about my weight loss and how sick I looked. He asks lots of questions like, "What if I put a crumb on your food, would that make you sick?" He's not trying to be rude or threatening, it's just his way of getting all his questions answered. He also teases me when he's eating something I can't and waves it in my face ... but that again is just how he's always been and he just isn't thinking. I in turn tell him that my delicious gluten-free pretzels are loaded with fat so he better stay away from them. I then rub it in how much better they are because they have fat in them and that I don't have to watch my fat intake, in fact, if I do watch it, it's because I'm trying to eat more of it to gain weight. So, I just play the game back and recognize that even though I don't necessarily think it's fun when he teases me, he's not trying to be mean, it's just his style of fun.

As for friends, most of them saw me sick, so they're fine with it. I don't expect any of them to remember what I can eat. If they mention one place, I just say, "I can't eat there, can we go ___" or I'll bring something I can eat. I go to Starbucks with my gluten-free biscotti and even ask for a plate so that I have one like everyone else does who orders a pastry. If I eat at their house, I help them cook and make something separate for myself if necessary. They're happy for the help and thankful they don't have to worry about making me sick.

Maybe friends who ignore the problem or treat you like it's not a real problem are in some kind of denial because they don't want to admit that you have an illness. It's hard to admit to myself that this is chronic and won't ever go away ... I know my father in law will always offer me snacks he's eating, I'll say I can't have it, then he'll say "Sure you can" like I'm trying to watch my weight or something. I don't get frustrated at him because it's not just with this illness that he forgets everything about everyone else in the world ... just as it's not the only thing my mom is mean to me about ... relatives, we're stuck with!

Oh, I want to add ... your friends who talk to the waitress in a restaurant may be just trying to help clarify that this is something serious rather than trying to apologize for you. Maybe they can see how uncomfortable you are and are standing up for you to make you more comfortable.

[Green12]

I don't have an official diagnosis of celiac, but I absolutely live like I do- for some reason this bothers some people in my family. They give me crap all the time about eating gluten free when I haven't had the biopsy confirmation. These are the same people that haven't been supportive over the many years I have struggled with all of my health problems and multiple food allergies and the 'special' diets I have had to follow. In the beginning I really struggled with it, I felt so abnormal and embarrassed about being different and not being able to eat what everybody else ate, but now I don't care. I fix my own food and take it with me, or if they are coming over then I cook a gluten free menu for everybody.

I find there are a lot of people out there that don't understand special diets, they think it's weird or you're weird, and they sure are more than happy to let you know how they feel about it. But there are also a lot of people who do understand and don't pass judgement. I think being strong with who you are and what you have to do in order to be healthy, that's what matters.

[kabowman]

My family and friends vary too.

My immediate family, meaning hubby and kids, are totally supportive!!! Could not be better, couldn't ask for more.

My parents, somewhere in between - one supports but doesn't understand the other thinks I go way overboard and am a little bit of a cleaning nut (because I keep the counters REALLY clean since I am the only one on the diet).

My inlaws are somewhere, I don't think they believe but support my "decision" (not really need) about what I can and cannot eat.

I have some friends, AND MY BOSS, who are supportive, completely, without questions.

I have one "friend" who think I am a freak and I eat wierd.

Others somewhere in between, tend to forget but go, OK, where can you go for lunch and that is where we will go then.

[cgilsing]

I found that my relationship with people before my diagnosis was directly related to their response to it afterward. It really seems to have fallen into 3 catagories. People who I was really close to; people who knew me, but not on a deeply personal level; and people who I didn't know yet.

The people that I was very close to before my diagnosis have been my life savers. I am so lucky to have people that care about me as much as they do. My parents and my husband are by far the most supportive people I have. My mom eliminated nearly everything gluten from her own house. She refuses to fix anything that is not gluten-free at family events. Even when I insist that it would be ok with me if she served the rest of the guests regular dinner rolls, she wont My sweet husband will practically dive across a room to read the ingredients on something that is about to be served to me, and my dad will drive cheerfully to and from the store 20 times if that's what it takes for a gluten-free meal. I think there are several reasons why they have reacted the way they have. Mostly it's because they are the kindest, most compassionate people out there , but also they are the people that watched me suffer. My husband endured middle of the night crying sessions because I was so miserable physically, not to mention months and months of disabling depression, hair loss dramas, and 14-15 hour periods of me being asleep. He knew something was wrong with me and then he saw first hand how much my life (and his) changed after going gluten-free. My mom also knew about everything that was happening, and to make it worse all of her friends were asking her if I had an eating disorder because I was so skinny. So when I was diagnosed, and started feeling better, those are the people that breathed a sigh of relief with me.

The people that I knew, but not on a deeply personal level have been the hardest to deal with. They knew me before I was gluten-free, but they didn't really know what I was going through so they don't understand why I need this diet now. My in-laws, the people I worked with at the time, and aquaintances that I didn't spend a lot of time with fall into this category. I didn't tell these people what was happening to me when it was happening. I really tried hard to always put on a happy face and act normal when I saw them....so now they don't really understand why this diet is so important. Really, I've been lucky that no one is really rude to me or anything......but a roll of the eyes here, or an exasperated sigh there says it all

People that I have met since my diagnosis have been pretty understanding. They don't know what I was like before my diagnosis and I don't talk a lot about it....so they assume it's important and leave it at that. These are usually the people that forget what I can't have, but I don't mind.....when I tell them I can't they look concerned like they have messed something up. I tell them it's really no big deal and it's not! If they are happy so am I.

[darlindeb25]

In our family, it's easier because 3 of us are celiacs, my father who is 71, my sister and I. My sister is also a dietician, so she experiments on better tasting recipes for us. How lucky are we to have a celiac dietician. Now my brother thinks we are nuts. He says, "Let me make you guys a big batch of barley soup and I will prove to you that barley can't hurt you!" Well, ummmmmmmm, none of us took him up on his offer, as a matter of fact, we told him he may want to be tested too. My own kids are pretty good about it, but do not truly understand. They are all grown with their own lives. At a recent Christmas dinner, my son had gone to the store for a few things and called me to ask which kind of rolls could I have. At least he was thinking.

We can always hope that others will understand and try to help us, but we always have to take care of ourselves. Deb

[TinkerbellSwt]

I feel I got very lucky in my situation in my family and friends. My dh as soon as the doctors in the hospital found out what was wrong (took 8 days) he was on the computer researching it ASAP. He came up with all the lists of things I could have and couldnt have. I still refer to him when I am unsure of something. He has yet to be wrong. He doesnt have to be gluten free, but since all I cook is gluten free, that is what he eats. No complaints. He has his loaf of sandwich bread which he keeps from me, but that is really his only luxury in this house. He also has been absolutely wonderful regarding our son, who will be a year old on May 10th. We are keeping our son gluten free until he can be tested throughly and heck, probably beyond that to. Its just a healthier lifestyle. I am afraid to let gluten into my sons life to possibly start the damage that happened to me. And so far our requests have been honored in respect to that.

My parents have been great about it. They accept what I can have and what I cant. My dad sometimes forgets. My mother never does. They always make sure that there are plenty of gluten free things at any get together. And when me and my son go for a visit, they eat totally gluten free. No questions asked! My brother thought I was a hypercondriac. I dont think he even yet believes that it is a life long disease I have. His wife will include me in a few things at any party or get together, but in general they stay away. Like they can catch it. I am pretty sure my brother has it anyway, but he wont get tested. I feel sad for him, not getting this checked out while he can still live a long healthy life.

In general, I have been extremely lucky. All of the people close to me have accepted this disease and do their best to help, not hinder me.

[Laura]

Oh, I want to add ... your friends who talk to the waitress in a restaurant may be just trying to help clarify that this is something serious rather than trying to apologize for you. Maybe they can see how uncomfortable you are and are standing up for you to make you more comfortable.

Oh, this is a really good thought! Thank you. I think you might be right in at least one case, and I don't know why I didn't think of it before.

People talking about their family members either already being celiac or refusing to be tested reminds me of one other thing about my mom: I think she should be tested, and she won't be. Now, her doctor did talk her into having some nutrient absorption tests, with the thought that if she wasn't absorbing enough it could be a sign of celiac and my mom might then be talked into that test more easily. And those tests looked fine, though I still really really think she should be tested. But I've dropped that, because I sometimes think the reason she doesn't want to acknowledge certain of my symptoms is because the diversity of symptoms is threatening to her, because it makes her think maybe she could have it even without the "classic" presentation. I'm like "don't you want to find out if you could be as much happier as I am??" And she replies - seriously - "I couldn't live without my toast at breakfast."

[2Boys4Me]

In our family, it's my six year old son who has celiac. My Mom & Dad live pretty far, so they haven't seen us since diagnosis (Aug. 2005.) I KNOW my Mom will be on board with cooking gluten-free for the time we are there (whenever we go), but I am pretty sure that my Dad won't quite get it. He'll want to go out and about and just stop at a shopping centre food court for lunch and I'm sure he won't understand when I say Ty can't eat there. On the other hand, he may surprise me and make sure I've packed a lunch for Ty before we head out for the day. He's hard to predict.

My sister, who lives across the country, went to her Superstore and mailed us cereal that had been discontinued here. She always sends me new recipes and if they have flour/crackers/whatever she'll say right in the subject line on the email "This recipe sounds good - can you convert it?", or she'll email and ask "is there a gluten-free version of..." or "I think this is gluten-free".

My Mother-in-law is AWESOME! Right away she said "Get me some recipes so I can experiment." She made a gluten-free Thanksgiving dinner (except for everyone elses buns, but she provided Ty with his own butter dish and we provided his buns...which everyone tried), has made countless batches of cookies and mini-pies and cakes. The cake at my FILs party was gluten-free, even though of the 15 or more people there only one needed a gluten-free cake. At my husband's cousin's house they had a birthday party. Ty walked up to the cake with his plate and said, "Is this cake gluten-free?" My MIL said, "No, honey, it isn't", so he just walked away and our cousin was so upset that she had forgotten (I wasn't there and we were out of cupcakes in the freezer anyway) that she said to my MIL, "Can't he just have a little?" and my MIL said "Absolutely NOT!" (Yay Gramma!)

Actually, I made a pizza the other day for lunch and when I gave him his piece he asked me if it was gluten-free. I had made one big pizza and usually my husband makes a big gluten one for him and big brother and a little personal gluten-free one for Ty. It was funny, Ty thought I was trying to give him a gluten pizza. Good for him for asking though, I think.

My one SIL phoned me before Easter dinner and read off a list of stuff she was having at the dinner and asked what she needed to change, or how she could make it gluten-free for Ty.

So far, our whole family has been terrific. And that surprises me, because Ty's symptom was anemia. No gastro problems or anything obvious that he was sick.

We have a couple of friends that when we go to their house, the mom has a stash and says, I double checked and called the 800 #, he can have all this, right?

The only hurdle we've encountered so far is birthday parties, and getting people to tell me in detail what they are serving so that Ty can bring a gluten-free alternative.

I think we are very lucky, and I feel bad for those of you whose family will not get it together to keep you healthy, especially when many of you have been sick for so long.

[whitball]

I have experienced alot of things prior to my diagnosis. So much that people around me would just tolerate me and my "issues. My office mates now say that I have an "ailment". If I call in sick from pain or fatigue, they will text message me and ask what my ailment is today...? I'm tired of the lack of concern and no one seems to appreciate what I have gone through my whole life before the diagnosis. I have been told that the problems are in my head, I was beaten when I was a child because this, and took alot of crap from coaches because I couldn't perform as expected. I'm glad that I have a diagnosis, but I would really like to say a thing or two because of the abuse that I took. Thanks for letting me vent. Tara

[jerseyangel]

Tara--My heart goes out to you. I will never understand why people, especially those closest to us, refuse to understand. I do understand what you have had to endure--and I'm so sorry

[penguin]

I was put on the diet by my doctor at a very bad time in my family. I had to travel to a neighboring state on the second day of my diet for a family crisis. My mom was really supportive at first, really interested in what would replace and etc. She didn't even roll her eyes too much when I wanted her to wash my raw steak off when she used a questionable seasoning. My aunt, trying to be supportive, asked if I could eat white bread. Everybody was surprisingly cool. DH is concerned for me, but thinks I'm being paranoid sometimes, though he knows I'm not. My inlaws don't think I'm nuts, and they try to accomodate.

My mom flipped when I was actually dx'ed. She said I was self diagnosing, being paranoid, should go get six million other tests done. Granted, I had a bad case of word vomit for a while there. She got sick of hearing me talk about it. Now she's flopped back over to supportive again. Telling me that I'll have to breastfeed until my kids are 18 (joke, obviously), asking about what I cook with, etc.

Um, not sure about my brother and sister, haven't seen them yet since dx.

My friends. Two of my friends are outstanding. My best friend was actually psyched for me! Her cousin has celiac and she knew all about it and was glad I figured out what was wrong. She loves gluten-free rice crispy treats. Another friend sent me a baking book, and did it anonymously. I had to call the vendor to figure out who the heck sent it to me.

I have one friend that didn't believe me. At a pancake house where I was having supposedly safe hashbrowns, she said, "well, if you really have that, why weren't you sick all the time?" I said that I was, and that I was very good at hiding it. My husband didn't even know. I didn't really care to share my harrowing tales of daily D. She looked at me like, uh-huh, sure. Sure enough, I got glutened, and was obviously sick halfway through our meal. I'm pretty sure the point got across.

I think it just takes time.