family thinks I'm gonna get obsessed with this

ilovechocolate · Joined: 27 Aug 2007 Posts: 50 Location: long island

So, perhaps you can bear with me for a few minutes as I vent or just kind of let it out a little.

I was diagnosed with my CD by chance. I don't have the 'classic' symptoms. My testing/exam was originally done for other reasons.

It's been about a couple weeks now and I feel like I'm adjusting fine, getting frustrated sometimes in the store, walking past the 'cracker/cereal' aisle with mixed emotions, and sometimes just feeling like, 'great, i've gotta always do this...it's not just for months'. Though I think I'm dealing with it fine and getting used to my new grocery list.
I went to the bookstore last night and bought a couple cookbooks. As I was thumbing through I was beginning to feel a bit emotional realizing that this is what I'm always going to have to deal with and just felt annoyed but more sad by it. But I'm sure it was just a sad moment that I'll get every so often. So on top of feeling that, my family and bf are thinking that I don't have to get too obsessed with this. That it's not like I'm experiencing discomfort/reactions or whatever. I try to explain that it's damage on the inside that's being done and preventing things from getting worse down the road. Ugh. I don't know. No one in my family has experienced something like this and especially since I've (luckily) been healthy my entire life and had no major issues that this seems surprising I think that they think I'm going to let it run me. I'm definitely the type of person that once I get something in my head, or don't feel well that I get easily concerned...I'm a worrier. But I feel like because people don't see me getting stomach pains or something that they think I'm getting into this too much. I'll have a follow up blood test in November and hopefully the numbers will have gone down and know that this is working. It just kind of makes me sad sometimes that I have to have people give me certain looks (like, 'c'mon you really can have just one meatball it won't hurt you..you've never been sick before, you're fine' kind of look) or they don't say anything because they don't want to get into it or hear me say 'can't have that, etc'. So for those reasons, when I get frustrated, I'm happy I have this forum and the helpful people here to listen, guide, and understand.

I'm going to read through my new recipes and bring something to my bbqs this weekend and just eat/drink the simplest things offered at the parties.

Real quick....I saw last week a website for a walk in NY. I was interested and wanted to mention it to the bf. Now I think he'd think I'm getting a little too much about it...I don't know. Maybe instead I'll ask my friend who has lupus...I did a walk with her a few years ago and she may be more understanding and more fun Smile

Thanks for listening....just feeling a bit blah over here Crying or Very sad

BUUUUUT...it's a long weekend for me and I'll be getting out of work in just a couple hours so I'm very happy about that and yes, even about trying my new recipes because I do enjoy to cook and bake.
hope you all enjoy any bbqs you may be attending as well Smile

ostrich · Joined: 30 Mar 2006 Posts: 4285 Location: Nebraska

First, Al already bumped our discussion on "supportive" family members for you. I'd take a look through that. You're not alone. Smile

It must be even harder for you because you don't show any symptoms. The way to tackle this problem depends on your family and time. Would your family be swayed by the actual numbers from the doc? "Hey look, I'm getting better! Here's proof!" If not, perhaps you can sit down with your family and BF and have a nice conversation. Tell them you love them all, and you'd really like their support with this. You're not looking to "convert" them, just understand what you're going through. They're your family; they should want to you get better.

FWIW my family is just now starting to come around, and I've been doing this for 1.5 years. Some people have been doing this forever, and their families never see the light. I told my family "Look, if twirling on one foot while singing I'm a Little Teapot makes me feel better, who cares? I'm not as sick, and I'm the one looking like a fool." Smile

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Ostrich :>--O==={

Did you think that your feet had been bound
By what gravity brings to the ground?

cruelshoes · Joined: 23 Sep 2005 Posts: 2679 Location: Washington State

If you haven't already done so, I would recommend reading "Celiac Disease, the Hidden Epidemic" or "Living Gluten Free for Dummies". Those are the 2 best books when first starting out, IMO. Dr. Green's book is better for understanding the disease itself, and Danna Korn's book is better for learning how to live with it.

As big of a change as it is for you, it is nearly as big a change for BF and parents. Chances are, they had never heard of CD or gluten before your diagnosis. It can be hard to swallow in our wheat-centric society that some product are just toxic to us. Give them some time to come around. I don't know if you know this yet, but all your first degree relatives (parents, siblings, children) should be tested. General population chances of having CD are about 1:133. First degree relatives have a 1:22 chance.

Having said all this, it really only matters what YOU think about it and how YOU handle it. I don't think parents or BF will be willing to take the chemo for you if you end up with intestinal cancer from not eliminating gluten from your diet. If this sounds harsh I apologize. If it means anything, my son has NO outward symptoms when he was diagnosed. We screened him as a first degree relative. But even though we could not perceive outside symptoms, he had extensive villi damage. Outward symptoms does not equate to internal damage.

There is a steep learning curve with this diet. The first 6 months are the hardest. After that, it gets a lot easier. You will make mistakes. We all do. But if you stick with it (and stick with us - we are here to help you), you will, in time, be able to relax a little and be more confident in your food options.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

ilovechocolate · Joined: 27 Aug 2007 Posts: 50 Location: long island

thank you both for your advice. nothing taken harshly, i understand what you're saying. And I don't want it to sound like I'm not surrounded by supportive, loving people because I am. I think it's just a big lifestyle change that's going to take some getting used to and education, for both me and my family. I'll have to check out those books as well. It'll be a learning process for all. I don't have children but told my brothers about perhaps getting a blood test next time they see their doc. I know they're just concerned and do love me and just don't want to see me get overwhelmed or maybe even isolated from social outings, which is understandable. The bf is lactose intolerant so he understands about diet needs. Sometimes I just feel a bit alone on this. At least in the past few years I've become more a label reader anyway and eat pretty healthy for the most part...but now I'll just have to be extra careful and it's interesting anyway I guess to know more about these ingredient lists and what goes into making a certain food.

nancw · Joined: 04 Oct 2006 Posts: 909 Location: Denver, CO

Everything you are doing/saying/feeling is normal. It will get easier, and family members may or may not come to a supportive understanding of your problem. Bottom line is that you seem to have a good perspective and attitude, even if things look bleak right now (I still have some pretty low moments when trying to figure out what to buy and what to eat), and you are smart enough to seek out knowledge.
Keep it up and read everything you can (from reputable sources, of course).
Smile

ps: Definitely ask your friend w/ Lupus to join you on the walk. She has an autoimmune disease too, so you now have that in common. Wink

_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

HadassahSukkot · Posted: Fri Sep 07, 2007 3:35 am Post subject:

I want to ditto everyone else.

The first few weeks, and the first 6 months are the hardest, but once you figure out where to get your flours and already made items, it is a cinch!

It is easy to get frustrated or kind of depressed shopping supermarkets and passing the bakery/baked goods and the cereal isles.

Shoot, I found chocolate corn pops the other day, one box was GF, and the other box was not suitable for a GF diet as it had barley Rolling Eyes

Same company, same product except one ingredient.

I didn't get it, I figured it was probably made in the same facilities, why bother. Laughing

Stick out the diet and ignore the 'oh, it's just one... it can't possibly hurt...' comments and stick to your guns.

I know nothing is more annoying than that and the 'you don't look sick' comments...

I really like the "But You Don't Look Sick" website http://www.butyoudontlooksick.com

The others have great reccomendations. This one really hit home for me, because my CD has made me really ill and I get the comment all the time.
I can laugh readily at all the little jokes and comments, and I am debating getting several of their pins etc..

I love their spoons theory. I didn't understand it before, but I sure do now!

I also love the 'But you don't look sick' comment come-backs... one of them being "Should I get a refund?" LOL
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ilovechocolate · Joined: 27 Aug 2007 Posts: 50 Location: long island

thank you both for the continued support. As we all know it can get frustrating at times. Especially when I feel like I can't have "real food" and my good old favorite treats. But I guess the more I learn then the more I can educate my family and friends. There's a lot to figure out on this stuff.

I checked out that website...funny merchandise they have Laughing

aklap · Joined: 02 Oct 2004 Posts: 8783 Location: WI, USA

Fidissimus · Joined: 17 Mar 2006 Posts: 1600 Location: Portland, OR.

Many, many good points made above... I just wanted to throw in my two cents. When first dx'd a lot of people go through a very normal grieving process. It's a loss of a way of life that you've experienced since day one. Since so much of our social structure revolves around food it will take some time to adjust to a big change like eliminating gluten from your diet. It will take your family time to adjust as well. Just keep reminding them and educating them about your condition and eventually they may come around or at least grasp what you have to do to stay healthy. Even if they don't or can't understand, as long as you make the consistent effort to remain GF is the most important thing.

Eventually though you'll get comfortable with the diet and it won't phase you to deal with eating out, or at a friend or family members house or doing grocery shopping. It just is apart of who you are like the color of your hair or how tall you are. But until you get there we're all here for you any time you need to vent. There are people here who "get it" even if your family doesn't.
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

plain_old_donut · Joined: 03 Jan 2007 Posts: 143 Location: MO

We don't have very much problem with people accepting my Dad's CD and all that goes with it. (Although sometimes my family thinks I spend a little too much time pouring over cd sites - but I think it's because they want their turn on the computer Wink

)

It's my husband who is allergic to corn, that has the problem. He self-diagnosed his corn allergy over 30 years ago. He got all the usual "diagnoses" from his doctor - IBS, Nerves, Lactose Intolerance, etc. But even today, people will tell him it's probably all in his head - some kind of psychological issue, or that he just does it for attention.

Co-workers and family members have even sneaked corn into his food just to prove their theory. No one has ever done that more than once. He makes sure to leave the bathroom door open, when he can finally come out, for all to enjoy. It's a good thing it's not a life-threatening allergy. I can't even imagine the nerve of someone who would actually do that.

Even if it were "all in his head" (it's obviously not!) - what business is it of theirs. He doesn't make a big deal of it. If someone offers him food he can't eat he simply says "no, thank you", then they make a big deal of his not being able to eat it.

Funny example - He was offered Pecan Pie at work the other day, he said "no thank you", coworker said "what does it have in that you can't eat" He said, "it has corn syrup, but I don't like pecan pie" she said, "I'll try to find a recipe without corn syrup, so you can have some" He said, "no, thank you. I don't like pecan pie" she said "how long has it been since you had it?" he said "a loooooong time".... "Well you probably don't remember. I'll make you some" .... "I DON'T LIKE PECAN PIE!" ..."Well, you don't have to make such a big deal out of it!" (huffs out of room)

True story!

ostrich · Joined: 30 Mar 2006 Posts: 4285 Location: Nebraska

Celia C · Joined: 13 Apr 2007 Posts: 47

That just horrifies me people would try to sneak corn into his food.

I saw somewhere, I think on another celiac forum (sorry I dont' think I could remember how to find it right now), an explanation of what non-sufferers think when they hear you can't eat wheat, flour, etc., or for some of us, corn, It makes as much sense to them as saying you are allergic to the color blue. (Of course, who in his right mind would eat blue food hah hah) anyways, say, you can't eat off a blue plate, drink from a blue glass, or eat anything that has touched a blue plate.

I thought that was a great comparison because when I first heard of wheat 'allergies,' and of course the thought that **I** may have that problem, it was the craziest thing I ever heard. I hought people just had an unhealthy gut from years of bad eating, and surely were mistaken about what their problem was.

I try not to not make a big deal of it when I have to refuse food, but it's funny to be saying to people sometimes several times a week, "sorry, I can't eat that,' and have them do a double-take like, Whaaaat?

Living alone it's a lot simpler than having family issues coming into play. My latest reaction is so long lasting, and settling on my eye area (oh, yeah, fingers too! Rolling Eyes

) I have finally figured out I have to have an unbreakable rule: For at least the next six to twelve months, ONLY eat food I prepared myself, if not 100% certain of something's 'gluten-free-ness' DO NOT EAT IT.

sick & tired of being sick & tired . . . . my itchy skin has become my hobby . . . I don't want to go in public and have people look at my face (but I grin & bear it somewhat).

I think I have gotten over the 'sorrow' about what I can't eat anymore, but I still go through the grocery aisles and see this, and that, and go, oh, yeah, I can't eat that anymore . . . .

Well, I think this post has turned into an aimless ramble. Oh well. I couldn't post for awhile because I forgot my password right after I changed it because I couldn't remember it and forgot I emailed it to myself
Embarassed

--- must be a related symptom!