I Need To Change The Way I Feel About Food....

[MitziG]

Went to a picnic yesterday- you know the kind. Everyone brings tons of yummy covered dishes and you eat 5 times as many desserts as you should... I always loved those. Well this was a groupd of people from my church that I am only acquainted with, not exactly close to. We moved here several years ago but it has never really become "home."

So, the kids and I just brought our cooler of our own food as we have given up trying to eat things that are made by others, even if they are gluten free (like chili) cuz we always get sick anyway. Which means while our food was adequate, it couldn't compare to the spectacular array of goodies everyone else was eating. And for some stupid reason, this brought me down.

Now, my little boy could care less. I had to drag him away from running and playing to shove a sandwich down him-he was there for the fun, not the food! And that is how it should be.

My daughter is scared to eat in general and I fear may be developing anorexia due to her need to control food situations. (She won't even eat food I make and bring for fear someone who ate gluten may have touched our cooler, or the table, or breathed on her plate (even thouggh I go to great lengths to clean everything) she does eat well at home though, but has really gotten thin. The week we went camping (and had our own gluten-free cabin) she refused to eat more than an occasional bite due to fear that others who came in the cabin may have contaminated her food!

And then there is me. The last person who needs 6 entrees and 12 different desserts anyway, feeling glum because my gluten-free brownies do not compare to the whipped cream and Oreo cake monstrosity that everyone else was raving about. Which is stupid.

I should be trying harder to get to know these people and fit in, but instead, I am left feeling even more isolated and excluded because I am not part of this gluttenous, glutinous, bonding experience.

Just feeling lonely and down today.

[ravenwoodglass]

((((((((((((((((((HUGS))))))))))))))))))))

I think a lot of us know how you feel. Kudos to you for even going. Some of us are uncomfortable even going to this type of function. It is depressing at times seeing folks eating all those yummy things and knowing we can't. I do volunteer work and there is always some kind of wonderful baked good that one or another lady will bring in. I am thankful that they have finally stopped insisting I have some but the 'well now we know why your so skinny' comments still hurt a bit.

How old is your DD? If she is at an age where Mom's know nothing and everything goes in one ear and out the other it might help for her to get a bit of counseling. She needs to find ways to help herself be comfortable and less anxious about eating things she can eat. You mention she is losing weight and with the school year about to start she needs to feel comfortable eating lunch at school or she may continue a downward spiral that develops into anorexia. You don't want that.

I hope things improve for you all soon.

[RonSchon]

I know how you feel. Many of our life's bonding experience take place around the old diet. Drinks, Desserts, Lunches and Dinners.

Whether it is social or professional.

I was even looking at going on a Mountain Biking group ride yesterday, and the post said - At the end of the ride we will go to XXXXXXXXXXX for lunch. I know that restaurant, and couldn't even trust a glass of water from them to be gluten free.

At work, at least once a week everybody pitches in for pizza. And again, at least once a week somebody brings pastry/donuts. At least a couple of times a month there is birthday cake.

Our challenge is so much more than the food challenges we face.

[bartfull]

I've got a picnic coming up soon, plus a wedding. I guess I'm different from most people because I could care less about the food at either event. I'll be bringing my own food to both and I will enjoy the company of my friends. At the wedding, I will be the, well, I can't call it maid of honor because I am no longer a maiden. I can't call it matron of honor because I am no longer married. I guess "old lady of honor" is more accurate.

But even then, when there will be more eyes on me than would be on me as a regular guest, I don't care. I'll enjoy whatever I bring and then get on with celebrating the bride and groom with all of our mutual friends. Who CARES that they are eating delicious treats? I can eat my own delicious treats. Who cares if someone asks why I brought my own food? Celiac is nothing to be ashamed of. If someone expresses pity I will just tell them the same thing I have mentioned here so many times: I consider myself lucky that MY illness can be controlled by diet, while so many other people get illnesses that require surgery or medications. That usually makes them stop and think. Then we change the subject and get on with life.

[MitziG]

Ravenwood, my DD is 13. She is in counseling for OCD already, and the food issue is part of it. She is homeschooled now (she was just too sick all the time.) We dual enrolled this year so she goes only in the morning and leaves before lunch. The first day of school this year already she left early throwing up. Stuck it out the next two days but felt really sick. She loves school and gets on well with people, so it isn't an anxiety issue. She is just unfortunate one who was healthier BEFORE she was dx. I know celiac would have caught up with her eventually, and she would have suffered badly, but it has been hard for her to go from being a kid who just spent a lot of time in the bathroom to a kid who spends a lot of time in the hospital, or at home, puking her guts out. Her food phobia is very well founded in reality unfortunately!

Bartful, you hit the nail on the head. You have the attitude I WANT to have- I WANT food to not matter. And if I felt like I had a group of true close friends here, it wouldn't...well not as much. But these people I. Know I just am not close to. Every outing ends up being well intended questions about my food- and about celiac, and I think I turned into one of those women who tells you all about their health problems. Too easy to do since the whole family was diagnosed suddenly, and simultaneously! So now I try NOT to talk about it...but since this disease is almost all consuming of our life, I feel like I have nothing else to talk about sometimes. When we visit friends and family back home, it isn't as much of an issue. They all know the whole story cuz they watched me grow up sick, and then my son be sick, and they were as close as family watching us get to the bottom of it. The love and concern and lengths they go to to provide us with safe food when we come is astounding, and I am truly blessed. But they are not here. So I guess I am largely dealing with homesickness, compounded by feeling like an oddball at social functions, whic ALL revolve around FOOD! Ron, you called it- it is a CONSTANT thing! Every chance to get to know people better and spend time with them seems to center on food...and it is exhausting trying to prepare for alternatives so often I just don't go...or I go, bring a sandwich to a pizza parlor and look like a weirdo. As for gluten free restaurants....they don't exist here. Small town rural Iowa your options are limited and I have given up trying to order safe food off the regular menu cuz I just get sick anyway.

[bartfull]

So Mitzi, what are your hobbies? For me it's guitar and I can "hide" behind my guitar in social situations where I'm not comfortable. How about you? Do you knit or crochet? Sewing, quilting? Do you paint or do ceramics? There must be SOMETHING you love to do that you could bring with you to these events. If you bring something with you that you can either work on while you're there or show off, you might be able to deflect from the food and maybe find someone with a similar interest to talk to.

And maybe there is a group in your town that likes to do the same things you do. A book club, quilter's guild, art or writing class. It sounds like you are tremendously lonely in your town. You need to push yourself to get out and meet people. I know that can be a hard thing to do when you are feeling uprooted, but I have found since I moved to the midwest that people really WANT to be friendly. You just need to find a common interest to break the ice.

[ravenwoodglass]

Ravenwood, my DD is 13. She is in counseling for OCD already, and the food issue is part of it. She is homeschooled now (she was just too sick all the time.) We dual enrolled this year so she goes only in the morning and leaves before lunch. The first day of school this year already she left early throwing up. Stuck it out the next two days but felt really sick. She loves school and gets on well with people, so it isn't an anxiety issue. She is just unfortunate one who was healthier BEFORE she was dx. I know celiac would have caught up with her eventually, and she would have suffered badly, but it has been hard for her to go from being a kid who just spent a lot of time in the bathroom to a kid who spends a lot of time in the hospital, or at home, puking her guts out. Her food phobia is very well founded in reality unfortunately!

The poor kid. It sounds like you are doing all you can. It is hard. I've only eaten out about 5 times since I was diagnosed almost 10 years ago because my reactions are so severe (intestinal bleeds and at least 3 weeks to recover) so I can understand her fear is well founded. I wish I had a solution for you but don't even have one for me. I hope her reactions become less severe in time but I know from my own experience that doesn't always happen.

Give her a hug for me and let her know she is not alone in her struggles. This disease can be very isolating at times and that is very hard for anyone but especially for a young person.

[RonSchon]

Like Bartfull said, I find also to be fine - push forward without it being an issue.

I find it affects me most emotionally when I go through contamination's. I just want to pull back into my safe cell and that is counter-productive at an emotional level yet I can't help it sometimes.

[Takala]

That supposedly "yummy" looking potluck type dessert food is so loaded with health destroying ingredients, it does not seem charitable to me to be offering it to other people to consume as a socially beneficial activity.

Hey, let's sit around and eat too much sugar, palm oil, cottonseed oil, saturated fat, corn syrup, artificial flavoring, refined grain carbohydrates and then kvetch about our body fat images, chronic heartburn, bone loss, which mood altering drug is best, and hysterectomies and gall bladder operations afterwards !

Uh, no thanks. Too, uh.... busy.

[MitziG]

Takala, too funny...and true. But still...did I mention it had Oreos???

Bartful...unfortunately my hobbies are sort of the "un-portable" variety. I really like to rearrange my furniture in the middle of the night for instance....and I rescue a lot of stray animals. I love to read...but reading a book at a party isn't going to help with interaction. I garden, I spend hours watching my chickens run around the yard. Sadly, I find no one that wants to watch me pull weeds and chase chickens at a party tho. Lol

I really need to get some talent.

I DO have friends...don't get me wrong. There are a couple of people I ride bike with occasionally, or that I can go the gym with or that will joyfully help me whip up a batch of gluten free cupcakes. There just aren't enough of them and since they have families as well, we don't get many opportunities to spend time together. And it is these "social functions" that bring me down. I keep busy enough with my family and daily life to not be swallowed up with loneliness...but the big events that used to be so memorable for me growing up- parties, pot lucks. (All very much a big part of mid west culture) that leave me feeling left out and lonely. Usually they are what brings people together, introduces new folks, creates a "community" feeling....and I'm just not feeling it anymore. I miss it, that is all. Like I said, just a bit down today. Havin a little pity party. There are far worse things.

[rosetapper23]

All the advice you've received has been excellent...and I sometimes feel as you do. People socialize around food, and even though I'm fine with going to potlucks and out to lunch, some people have shied away from me over the years because I think they wonder, "Why should I invite her? She can't eat the food." Now I know which friends are truly friends and which ones simply don't bother to put any effort into maintaining a friendship. And it's funny--a few friends tried going gluten free, and now they feel so much better, they've decided to stay gluten free. I think if more people did that, there would a LOT more people following a gluten-free diet.

MitziG, with regard to your daughter's aversion to food, there may be a physical reason that is causing her psychological problems. Before I knew I had celiac, when I went through a time when my hormones were causing me problems (just as they would for a 13-year-old), I suffered from anorexia and phobias. I knew this was not normal behavior and began researching it at the university library (because, yes, this was WAY before the Internet!). Anyway, I discovered that malabsorption of certain B vitamins--especially Thiamine--could cause anorexia and phobic behavior. Thiamine also appeared to be tied in with hormone malabsorption. Since B vitamins are water-soluble, you might wish to try augmenting your daughter's diet with a good Co-Enzyme B Complex. Secondly, I would highly suggest that you take her to see a gynecologist or GP to have her hormones tested--she may be having absorption problems, and this can definitely lead to emotional/psychological problems. Remember: Celiac disease is as much a neurological disease as it is a disease of the gut.

[Bubba's Mom]

I garden, I spend hours watching my chickens run around the yard. Sadly, I find no one that wants to watch me pull weeds and chase chickens at a party tho. Lol

I, for one, would love to watch you chase your chickens around. I'd love to have some, but I live where we can't have them and our 3 dogs would make it impossible anyway.

A year gluten-free and I'm still not at a place where I'm comfortable around others' food. I have also developed many additional food intolerances. My diet is very boring and limited.

When I get around other people that are binging on foods I don't dare touch it gets to me. I feel such a sense of loss, and I always get questioned about why I'm not joining in or only eating the food I've brought with me. I don't want to be the center of attention and it makes me uncomfortable to be singled out and questioned. I try to be discrete. When pushed I will list my intolerances and always get the same reaction.."what on earth do you eat"? Even my new PCP asked me that when I saw her on Friday.

Going to restaurants isn't safe for me with my level of sensitivity. Family members get together at holidays at various restaurants and just don't invite me. I'd be fine with just ordering an iced tea or something, and enjoy the company. Unfortunately, our culture is so food oriented the thought of not eating at a get together sounds so crazy that others don't consider it a possibility.

I don't know if I'll ever get to where I'll be comfortable at a function like a pot luck. I can't imagine it!

I'm pretty isolated. I quilt and have a blog and know a lot of other quilters through that and a Flickr account. I try to focus on that..but food seems to be creeping onto the quilting blogs I follow more and more too?

I don't work outside of the home and my hubby travels for his work. I see him only on the weekends that he's home, which isn't every weekend. In my case, I think it's better that I'm alone all of the time? At least I won't get cc and won't feel bad like I do when my hubby is eating ice cream and cookies, or cheese and crackers,etc. around me.

[love2travel]

I am a little different because I do not ever want food NOT to matter. It is one of my obsessions and I could not survive without cooking glorious meals all the time. When I go to events and take along my own food, it is always naturally gluten free anyway and better than those who have gluten-y food. You can make relatively healthy fabulous desserts that are intrinsically gluten free that would put all others to shame. Seriously. There is absolutely no reason why we should not be able to eat just as well or BETTER than those not on the gluten-free diet. But then I am a recipe tester and teach cooking classes. It's just in my blood!

And Mitzi, homemade gluten-free Oreo's are VASTLY superior to those incredibly fake icky gross deplorable commercial facsimiles.

I do understand your being lonely. Since we moved to this town I was in an accident and am in constant pain so it is hard to visit. In fact, I must lie down on the floor after sitting for about half an hour. And people always tell me their cooking cannot compare to mine so they do not invite me over. That makes me sad. I would not eat their food, anyway, as it would not be safe but still. My family is all several hours away, too, and I have few close friends here. Very few. Thankfully I have many hobbies. Reading is one of my other things and as I must lie down a lot I read a lot.

We all have discouraging down days. Thankfully tomorrow is a new day filled with promise and hope!

[MitziG]

Rosetapper- we have had every level of everything checked on her- hormones, micronutrients, fat absorption- perfect. Even though she had marked villous atrophy, she was still absorbing perfectly. Always 95% growth. But she has had OCD since early toddler years and I do feel strongly it is linked to being celiac...but have yet to find a doctor that agrees. Y sister has OCD and because her celiac tests were negative she is convinced gluten is not HER problem. Argh. Family.

Anyway, I am continually digging into and under everything to make my kids well, but so far, every stone I have turned over comes up empty. She is so sick now, so often. Our house is so impossibly gluten free and she practically lives in a bubble...but still is always sick with Diarrhea and vomiting. She is casein free too, and that has honestly made the most positive difference in her mental and physical state. The constant skin issues and "puffiness" in her body disappeared, she is much more focused and less tempermental..the OCD behaviors are minimal now compared to what they were. She started hoarding food at 18 months, and every doctor I asked about it treated me like a child abuser. No one could fathom that a kid with a normal, healthy homelife would have hoarding behaviors. The food hoarding worsened after she went gluten-free....and junk food disappeard in minutes. She would both binge on it and hide it in her room. The shrink thought it was because of having food restrictions. But...took her off casein and suddenly she doesn't hoard food, doesn't crave junk food and loves salad, a food she avoided like the plague before! I think drs have NO CLUE what a food intolerance can do to a person mentally! My suspicion is that there are still more intolerances...but since allergy testing was useless, it is really like searching for a needle in a hay stack. But...still searching, and she is better than she was, poor girl.

Bubbas mom- please come over any time for "Chicken TV!"

Loves to travel...I'm a darn good cook actually. And I was making delicious gluten-free goodies to bring to these things...but had a problem with others contaminating them, and it was stressful trying to make sure there was some left for US to eat...so then I would make TWO of everything- one to eat, one to share....which got expensive and time consuming....so last few times I just brought seperate stuff for us. No perfect solution I guess.

[rosetapper23]

MitziG,

You are Wonder Woman--and I applaud you!

With your perseverance, I think you may very well bring your daughter all the way back to good health.

[MitziG]

Awww...now I'm blushing.

[Persei V.]

Well, you are trying, so that's really nice. Since this is my first post here, I'm going to say I'm 15, diagnosed with gluten and lactose intolerance. I knew about the lactose since I was nine (but I had it ever since I was a baby, so I spent nine years of my life sick) and developed gluten intolerance recently (roughly 6 months). My mom didn't think it was a serious disease, and would go away soon, and did not believe gluten is a sneaky bastard which can creep up on foods. I started to go anorexic.

Still now, with my mom's support, my relationship with food isn't healthy and I know what your daughter feels, and having someone to support is... Is heaven, really. You are doing great for respecting her fears and soon she will come around, you'll see.

[MitziG]

Well, her fears aren't irrational you see. She gets very very sick from "mystery" exposure. Try as we might, we never know the source of her exposure. Our whole house is gluten free as 3 of us are celiacs. She eats nothing anywhere else. Period. So...it is usually chalked up to doorknobs or surfaces that are contaminated. Can't disinfect the world. So she has become very, very controlled about what she eats and when, and since she already has OCD, having such control issues about food is a slippery slope that could easily lead her into an eating disorder. I struggled with disordered eating for 20 years so I am particularly cautious when I see her exibiting some of the same behaviors I had. She has always been a "solid" girl, never overweight at all, but definitely not waifish. Since she went off casein, her whole physique changed. Frankly, she is a knockout now. 5'8" and 120 lbs, all muscle. She is excited because she can finally wear "skinny jeans"y before she was always too bloated. I can just easily see how her enthusiasm for her new shape combined with the food control could snowball. So, I'm watching closely...

[GFinDC]

Hi Mitzi,

Maybe you can find a local celiac support group in the area? Around here there is a group that hosts dinners and potlucks for the local celiacs to attend. If there is one in your state nearby it might be worth checking out.

About the daughter, I wonder is she is reacting to another food. There are so many possibilities there but the common ones are nightshades, soy, corn, eggs, and diary. It might be worth eliminating all of those for a while to see if there is improvement. It might help. We can come up wiht some odd intolerances. Like carrots and grapes for me. So everything needs to be considered. Especially things that she eats often. Since she is sick often it is probably something or somethings that she consumes regularly. Well, seems like it would be anyhow.

[MitziG]

Yeah..there is a celiac support group here...but they are a bunch of clueless whiners who make me want to bang my head in frustration. Not my cup o tea.

I suspect either food intolerance or fructose problem for her. Getting the latter checked next week, if nothing then getting referred to Celiac specialty clinic at Iowa City.

[GFinDC]

Yeah..there is a celiac support group here...but they are a bunch of clueless whiners who make me want to bang my head in frustration. Not my cup o tea.

I suspect either food intolerance or fructose problem for her. Getting the latter checked next week, if nothing then getting referred to Celiac specialty clinic at Iowa City.

Ha ha , clueless whiners are the worst! I much prefer informed whiners with their knowledgeable complaints. well, maybe the daughter could find some friends in that group to share lunches with or something. Has she been keeping a food log with her symptoms? Seems like that might help her eliminate some fear. If she has in writing what she is eating and some of those foods don't make her sick, then she knows she can eat those safely. It works both ways, find the bad foods, but also find the good foods. I hope it works out well for you both. This food intolerance stuff can be such a mystery at times.

[justlisa]

MitziG...

Have you checked out www.gutsy.com?

Caroline (the owner of the gutsy site is a super-sensitive 18 yr old. She follows GAPS diet. She is an extraordinary young lady and very very knowledgeable. She is, also, very active on her site...answers every commenter from what I've seen so far.

I'm just thinking you might want to check her out...maybe ask her some questions or get ideas for your daughter.

Just a thought...

[MitziG]

Thanks, I will check that out. Haven't heard of it before. Oh, GFinDC....clueless whiners are also middle aged women...so they probably won't come hang with her at school.

[GFinDC]

Thanks, I will check that out. Haven't heard of it before. Oh, GFinDC....clueless whiners are also middle aged women...so they probably won't come hang with her at school.

Oh well, probably for the best then. All those cougars hanging around the school could be bad. Just kidding!

[tom]

...

I think drs have NO CLUE what a food intolerance can do to a person mentally!

...

Boy ain't THAT the truth!

There IS some neurological research but of course it rarely makes its way to the GIs or PCPs.