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So Fed Up


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22 replies to this topic

#1 EricaM15

 
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Posted 16 March 2013 - 10:49 AM

Yesterday was my birthday, and my parents insisted on taking me out to a restaurant after I had told them that I'm most likely sensitive to cross-contamination. I felt paranoid during the whole meal, just watching myself for symptoms. My mom has a way of making me feel guilty for being so sensitive and continually asks what she can cook for me. At this point, my diet has become restricted to fruits, vegetables, and seeds (no potatoes or legumes). I'm still unsure about nuts since I had a reaction to almonds this week. I honestly don't want to eat anything cooked in my parents' kitchen because I'm afraid of cross contamination, but my mom acts like it's her duty to cook food for me, and I'd rather she just prepare raw vegetables to avoid the chance of contamination. Anyways, this restaurant had plenty of gluten-free options, but very few that I could eat because I'm sensitive to grains. I ended up getting a salad with cooked pears and beets, and after eating it, I felt tired and had a headache. Then my mom tells me I have to go to a family friend's Bar Mitzvah party and eat the special meal they ordered for me, at a restaurant where I'm sure they won't segregate my food when they cook it. She doesn't seem to believe me when I tell her that cross-contamination is probably an issue for me. I don't know what to do. I'm tired of my parents acting like it's just paranoia, and then my mom seems to act like I'm burdening her with information every time I find a new sensitivity. I'm already stressed about this enough. I'm simply trying to be careful because I know I'm extremely sensitive given the fact that my diet has become so restrictive and my parents make me feel guilty for it. How do you deal with friends and family?


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#2 pianoland

 
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Posted 16 March 2013 - 11:26 AM

Something I've had to tell myself over and over is that food should not stress me out. Stress is enough to trigger what feels like a reaction (often psychological for me).

 

If you give your mom the knowledge/understanding of cross contamination, the foods that are safe for you, and buy separate cutting boards/strainers/pots/pans/stirring utensils, she can certainly cook for you. 

 

You should never let celiac get in the way of social events...going out to eat is more about being with the people than it is about the food. Bring something if you're not comfortable eating what they serve.


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#3 Kamma

 
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Posted 16 March 2013 - 01:57 PM

There is a recent study showing how some celiacs do not get better on a 'processed gluten free' diet and that contamination is an obstacle in healing.  I believe dilettantsteph just posted it last week in the "super sensitive" forum right here.

 

You might want to show it to your mom so she knows there is scientific evidence backing you up and that it isn't all 'in your head'.


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#4 EricaM15

 
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Posted 16 March 2013 - 06:06 PM

Yeah, I stopped eating "gluten-free" processed foods about two months ago when I started feeling worse again.

 

Thanks for pointing me towards that article though. I'll definitely show it to my parents.


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#5 suziegp

 
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Posted 19 March 2013 - 05:10 AM

I eat before I go and then just have a glass of wine.  What made a difference with my mom is when I said, "I am comfortable with it.  What I need is for you to be comfortable with it."  To the server, I say I already ate, but want to visit with my friends, so I'll just have a glass of wine.  Some extended family members have talked behind my back (is she anorexic?  do we need to to an intervention?), but if it wasn't that it would probably be something else.  It is what it is.

 

We're going on a 3-day trip soon and I will be packing my own food.  I've been surprised how much I can enjoy going to a restaurant without eating.  I can focus on the conversation and relax.  It's also a money saver LOL.  

 

Thanksgiving, Easter, whatever, I bring my own food.  (Christmas is at my house - yay!)

 

Printing out info on cross contamination may help.  That's what I did for my husband.


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#6 lbeehenderson

 
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Posted 17 April 2013 - 04:28 PM

Yeah, I stopped eating "gluten-free" processed foods about two months ago when I started feeling worse again.

 

Thanks for pointing me towards that article though. I'll definitely show it to my parents.

 I've been having a problem with "gluten free" processed foods too.... how can they be labeled "gluten-free" if people are still having reactions??! AGH! Yes, SO FED UP TOO


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#7 Melissa.77

 
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Posted 17 April 2013 - 04:49 PM

I have to say a little something about this. I was recently diagnosed and now I have been even sicker then before when cross contamination happen but my mom keeps telling me it's in my head. She thinks its strange that I ate these foods for years and wasnt so sick and now I am. She said she doesn't think this eating glutin free is any safer for me. So Last night she called and I was in bed with a migrane and a bucket throwing up so she asked me why and I told her I think I ate cross contaminated food. She then laughed and said no you probly have bug. So I feel your pain with this and it makes you feel like you are possing problem with others. Horrable


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#8 dilettantesteph

 
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Posted 19 April 2013 - 05:18 AM

It is weird.  It is strange how some of us seem to get sensitive to lower levels over time.  The level of sensitivity I have gotten to now is crazy.  Plain and simple.  It is no wonder people doubt it.  Yet, when I manage to avoid gluten sources, I feel great, and I'm not having all those symptoms that I have when I get cc.  Some of us have to be extremely careful about cross contamination and some don't.

 

The reason that food is labeled gluten-free anyway, is that there are a bunch of celiacs out there who can eat this food without reactions.  This food isn't for all of us.  I just wish that there were more education out there so those of us who are super sensitive would know this.  It would also be nice if others could be aware too so that they would stop thinking that we are crazy.  It took me a long time to figure it out and meanwhile, I was terribly sick and not knowing why.

 

It is great that a study has been published about this so that we can show it to our doctors, parents etc. 

I hope you all manage to find good health.


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#9 1desperateladysaved

 
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Posted 19 April 2013 - 05:48 AM

There are some of us that do not believe you are crazy.  Honestly, I think my reactions are really weird myself.  No wonder my family doesn't believe them.  Over time, I am hoping it will all work out.  One can set up a kitchen nearly anywhere with an electric skillet, crock pot, and a table.  I  feel so much safer not cooking where gluten is cooked.

 

Diana


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#10 jjbrigade

 
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Posted 19 April 2013 - 07:17 AM

I have to say a little something about this. I was recently diagnosed and now I have been even sicker then before when cross contamination happen but my mom keeps telling me it's in my head. She thinks its strange that I ate these foods for years and wasnt so sick and now I am. She said she doesn't think this eating glutin free is any safer for me. So Last night she called and I was in bed with a migrane and a bucket throwing up so she asked me why and I told her I think I ate cross contaminated food. She then laughed and said no you probly have bug. So I feel your pain with this and it makes you feel like you are possing problem with others. Horrable

I am having the same problem. I can't figure out if I'm just eating something wrong, or if it's due to cross contamination. It's very difficult, with all the boxed and processed foods these days, to know what to look for on the label. I had a friend tell me that I should stick to organic food, and if it has more than 5 ingredients in it, to steer clear of it. This has been a difficult change for me, seeing as I don't really cook. I get sick randomly, and I try and think about what I had to eat that day. But sometimes I react and sometimes I don't. Which is why I'm thinking cross contamination. I had ONE piece of licorice, even tho I know I shouldn't eat it. That was the worst night of my life. I didn't realize that migraines/headaches were a reaction to gluten. That makes so much more sense now!


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#11 IrishHeart

 
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Posted 19 April 2013 - 09:49 AM

JJBrigade, Licorice has gluten in it. That's not "cross contamination", ok, that's a direct hit from gluten. Don't eat that! :)

 

A good article about dealing with family/friends who do not seem to "get it" is here

 

http://www.celiac.co...Korn/Page1.html

 

 

here is what I say to someone who gives me any crap about this:

 

"Sorry you do not understand it, but you do not walk in my shoes and I cannot expose myself to illness just to please you". But honestly, all of my family saw how ill I was from celiac and they never say a word.

 

 

I am very sensitive to trace gluten and I suffer symptoms for a week or more after a hit, so I understand all of your concerns.

 

The thing is, I can and do eat out sometimes now that I have 2 years under my belt and my very ravaged gut is healing, and I suspect some of you will do better overall with eating out and maybe having a few packaged, certified gluten-free foods, too---as you heal a bit more.

 

Give it some time. 


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#12 Colleeney

 
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Posted 19 April 2013 - 10:52 AM

Yesterday was my birthday, and my parents insisted on taking me out to a restaurant after I had told them that I'm most likely sensitive to cross-contamination. I felt paranoid during the whole meal, just watching myself for symptoms. My mom has a way of making me feel guilty for being so sensitive and continually asks what she can cook for me. At this point, my diet has become restricted to fruits, vegetables, and seeds (no potatoes or legumes). I'm still unsure about nuts since I had a reaction to almonds this week. I honestly don't want to eat anything cooked in my parents' kitchen because I'm afraid of cross contamination, but my mom acts like it's her duty to cook food for me, and I'd rather she just prepare raw vegetables to avoid the chance of contamination. Anyways, this restaurant had plenty of gluten-free options, but very few that I could eat because I'm sensitive to grains. I ended up getting a salad with cooked pears and beets, and after eating it, I felt tired and had a headache. Then my mom tells me I have to go to a family friend's Bar Mitzvah party and eat the special meal they ordered for me, at a restaurant where I'm sure they won't segregate my food when they cook it. She doesn't seem to believe me when I tell her that cross-contamination is probably an issue for me. I don't know what to do. I'm tired of my parents acting like it's just paranoia, and then my mom seems to act like I'm burdening her with information every time I find a new sensitivity. I'm already stressed about this enough. I'm simply trying to be careful because I know I'm extremely sensitive given the fact that my diet has become so restrictive and my parents make me feel guilty for it. How do you deal with friends and family?

I feel your pain. Having an on going problem with my Aunt ( my mother died at 60 probably due to undiagnosed Celiac issues) who insists she will only go to this French bakery/restaurant for her birthday lunch. Last time we went I got sick as there was flour in the air and a dusting all around. Frustrated because she couldn't believe flour in the air could make me sick she asked "so when will you out grow this". Doesn't seem to matter how old I get I just never seem to be an adult to family. Gotta love them, that's what family is all about LOL (Ps took her plant shopping for her birthday instead)


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#13 Melissa.77

 
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Posted 20 April 2013 - 03:58 PM

I Have been trying my hardest to stay away from glutin. I have basicaly went to fresh fruit and veggies. Chicken and Steak oh and potatoes but yet still get sick alot and I believe it's cross contamination but not sure because I don't understand it. For instance I made treats for my kids not glutin free and never ate one bit but yet I was sick is it from breathing it, touching it what is cross contamination. HELPPPPPPPPP


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#14 tarnalberry

 
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Posted 20 April 2013 - 06:29 PM

Melissa, I cannot emphasize how important it is that you consider taking the house entirely gluten free for long enough to see if you can heal, and only then add things back in to the household slowly. And definitely do NOT cook with wheat flour for them!
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#15 Melissa.77

 
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Posted 21 April 2013 - 10:28 AM

I know but my husband and children do not understand why they should have to switch to these things when they are fine. They love those little debbie Cakes and junk food lol. Its hadn for them to get it.


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