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Frequent "glutenings"


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#1 Elfbaby

 
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Posted 22 July 2011 - 10:06 PM

I am trying so hard to do this stupid thing right. I felt better at first, but it seems like, the farther from the gluten that I get, the more sensitive to it I get and every little thing sets me off! My skin is a miserable mess again, and I literally can't keep from getting "glutened" long enough for it to clear up. It will start to get better, and then suddenly, some CC will occur and I will get those little freaking orange blisters again, which I can't help but scratch and then they scab and turn into a flaky mess. My hands are back to looking really freaking gross.

I am eating strictly gluten-free foods. Everything that I put in my mouth is gluten-free and I am really careful about that. The problem is that I live with 3 other adults who aren't gluten-free. My mom is super careful about CC and looks out for me as much as she possibly can. When this all started, she almost immediately identified butter, peanut butter, and mayonnaise as sources of contamination. So now there is separate "gluten-free" versions of those foods. She has fixed the cookware so there is completely gluten-free cookware and dishes, and even bought a separate cutting board so that we could cut veggies and things without using the bread board. My step-dad is likewise careful (although not nearly so much as she is). I realize that this is a huge imposition and and super grateful to both of them. I have pretty much given up on my sister though. She does nothing to minimize contaminating community food. So much so that they other day, my mom came in and told me that she made me my own sugar container because she found bread crumbs in the sugar. I identified the shredded cheese as the most recent culprit for cross contamination since my sister is using it to make grilled cheese sandwiches and not only not washing her hands before getting cheese, but she is buttering her bread over it. I don't expect her to change. I just don't know how I can protect myself from this while living in the same house. The other day she brought me a peanut butter cookie and told me that she made it using the gluten-free peanut butter. I ate it. The next day- had big problems. I finally remembered the cookie and when I went and checked, the gluten-free peanut butter hadn't even been opened. She had used the regular one and lied about it. I don't know what the motives were there, but it sort of makes me feel like she is screwing me up on purpose.

If you have made it this far, thanks for reading. I am just trying to figure out how to handle this. Moving out isn't an option at this point since I have just started a new job and have a 10 month old. I just need a new angle on how to handle the food issues.
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Gluten-Free since 5-10-11
Gall-bladder removed 8-7-09

Glad to be rid of daily intestinal revolt and a debilitating skin rash!

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#2 come dance with me

 
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Posted 23 July 2011 - 01:33 AM

I know you have a baby and a new job but is there any chance you can move out soon-ish? I think that's your best bet TBH.
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

#3 Roda

 
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Posted 23 July 2011 - 01:39 AM

If moving out isn't an option right now then buy and make your own food and keep it under lock and key in your bedroom or somewhere noone can get to it and contaminate it.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#4 ravenwoodglass

 
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Posted 23 July 2011 - 02:54 AM

I agree with Roda, get your own stuff and keep it under lock and key. If your Mom will let you put a small padlock on a cupboard and let you put a small dorm size fridge in your room that is most likely your best recourse if moving is not possible.
Since having only one celiac in a family seems to be rather rare your sister may have some payback coming from her own body in the future. If she is doing this deliberately perhaps your Mom and step father can have a stern discussion about this with her.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 kareng

 
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Posted 23 July 2011 - 04:57 AM

You can get a "camp box" or "dorm chest" or a "truck box" at Walmart or a large hardware store. They have a place to put a lock. There are also small fridges that have a place for a lock. In college, my hub rigged up a latch - can't remember how but he might remember if you need to know. Or lock the room but that might not work if Goober sleeps there, too.

I have a 15 & 18 year old & they can follow a few simple porcedures. The main one is get a clean plate. Put/cut you cheese or cold cuts on the plate first. Put the cheese away. Then get the bread or crackers. Pour out the chips.

Your sis sounds like she doesn't like the attention you & the baby are taking away from her. Perhaps your mother could explain that everytime you get "glutened" it makes it that much harder for you to keep a job & move out. It makes it hard to take care of the baby when you are sick, so mom wants to keep you & Goober where she can help.

Have Mom & Sis been tested?
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#6 Jestgar

 
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Posted 23 July 2011 - 05:51 AM

Have your parents announce that you will need to live on your own, since you keep getting sick in their house. Then announce that in order to help you save money for your own place, the family would be doing without {list of sisters favorite treats}. :P
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#7 eatmeat4good

 
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Posted 23 July 2011 - 10:16 AM

Knowledge is Power!
You KNOW your enemy is Gluten!
And now you know your other enemy is your Sister!
Stop taking her word for anything and don't eat from anything she has touched...ever.
She doesn't get it...but you do! So protect yourself from her.
I agree with the suggestions above.
Make your own food at all times, unless your mom made something (it sounds like she is careful) But you MAY not be safe even if your mom cooks if your sister is going around contiminating things. Jeez...with friends like that...who needs enemies?
Your sister prolly makes her grilled cheese in your gluten free pans when no one is home. Don't put it past her. Lock them up too!
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#8 Skylark

 
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Posted 23 July 2011 - 11:05 AM

Bread crumbs don't just appear in sugar like they do butter or mayonnaise so you have to conclude your sister deliberately put them there. I don't know what's going on between you and your sister, but it isn't healthy and I agree it isn't likely to change. You need to lock up your food, dishes, and pans and obviously you need to turn down food your sister prepares for you as well.
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#9 Nxsquid

 
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Posted 25 July 2011 - 06:49 PM

I am trying so hard to do this stupid thing right. I felt better at first, but it seems like, the farther from the gluten that I get, the more sensitive to it I get and every little thing sets me off! My skin is a miserable mess again, and I literally can't keep from getting "glutened" long enough for it to clear up. It will start to get better, and then suddenly, some CC will occur and I will get those little freaking orange blisters again, which I can't help but scratch and then they scab and turn into a flaky mess. My hands are back to looking really freaking gross.

I am eating strictly gluten-free foods. Everything that I put in my mouth is gluten-free and I am really careful about that. The problem is that I live with 3 other adults who aren't gluten-free. My mom is super careful about CC and looks out for me as much as she possibly can. When this all started, she almost immediately identified butter, peanut butter, and mayonnaise as sources of contamination. So now there is separate "gluten-free" versions of those foods. She has fixed the cookware so there is completely gluten-free cookware and dishes, and even bought a separate cutting board so that we could cut veggies and things without using the bread board. My step-dad is likewise careful (although not nearly so much as she is). I realize that this is a huge imposition and and super grateful to both of them. I have pretty much given up on my sister though. She does nothing to minimize contaminating community food. So much so that they other day, my mom came in and told me that she made me my own sugar container because she found bread crumbs in the sugar. I identified the shredded cheese as the most recent culprit for cross contamination since my sister is using it to make grilled cheese sandwiches and not only not washing her hands before getting cheese, but she is buttering her bread over it. I don't expect her to change. I just don't know how I can protect myself from this while living in the same house. The other day she brought me a peanut butter cookie and told me that she made it using the gluten-free peanut butter. I ate it. The next day- had big problems. I finally remembered the cookie and when I went and checked, the gluten-free peanut butter hadn't even been opened. She had used the regular one and lied about it. I don't know what the motives were there, but it sort of makes me feel like she is screwing me up on purpose.

If you have made it this far, thanks for reading. I am just trying to figure out how to handle this. Moving out isn't an option at this point since I have just started a new job and have a 10 month old. I just need a new angle on how to handle the food issues.



I can imagine it might be your sister acting out. I know my sister has the same sort of mind-frame. She might view your disease as you getting more attention than her, and with your mom giving you so much kitchen space, it seems so. People have weird ways of showing their jealousy and for all the wrong reasons, but my sister was the same way (though less sabotaging). Unfortunately, I don't really have a solution. :/
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#10 Reba32

 
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Posted 26 July 2011 - 07:41 AM

peanut butter cookie made with gluten free peanut butter? How about all the other stuff that goes into making a cookie?
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#11 kareng

 
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Posted 26 July 2011 - 08:02 AM

peanut butter cookie made with gluten free peanut butter? How about all the other stuff that goes into making a cookie?



Might have been these cookies. Alot of people make them. I made them in my pre-gluten-free life.

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#12 aeb

 
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Posted 26 July 2011 - 05:40 PM

My little sister is also a bit jealous of the "attention" my mom gives to my special diet. I am living at home while at grad school, my sister spends most of the year away at college. So my parents and I are really close. My sister decided to become a vegetarian right after I went gluten free. I haven't seen her actively putting gluten in my gluten free condiments and things, but she is always putting my food down and saying that just a little wont hurt. So I started making a big deal about accommodating her vegetarianism when she visits. Maybe try to find something to "accommodate" your sister, give her some additional attention.
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#13 Medusa

 
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Posted 29 July 2011 - 06:47 AM

Could also be a twisted kind of denial - some people are soo determined to "prove" that celiac is all in your head they will try and prove it to you by "testing" you - secretly or openly - by glutening you on purpose. If she is having to face the possibility that actually, she might need gluten free food too, but doesn't want to accept it, that can only make matters worse.

We got round any such issues by going gluten free as a family, it doesn't have to be expensive although it can be limiting at times. Actually, we all felt much better for it. If your sister is that anti-gluten-free, she might then move out and solve your problems!
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#14 Elfbaby

 
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Posted 02 August 2011 - 11:04 PM

peanut butter cookie made with gluten free peanut butter? How about all the other stuff that goes into making a cookie?


The peanut butter cookie recipe that we use is actually 1 cup peanut butter, 1 egg, and 1 cup sugar. They come out very tasty.

Thank you for everybody that read and gave advice. Moving out just isn't an option at this point, but separate foods are. I make my own money, so I am able to buy my own groceries. I have been labeling everything "Gluten-free" (even cheese and bacon) to mark them as mine.

I think the jealousy thing might be hitting the nail right on the head. I wont say that the whole house is completely gluten free, but when my mother cooks dinner, she doesn't cook with it anymore, which is probably irritating my sister.

I decided to take a chance and took her out to lunch the other day. I made her sit there and watch how careful the waiters and cooks are at Red Robin (the manager came over again and gave us the whole spiel about how careful they are again, which helped a lot) and I think that it may have made an impact. My skin has been clear now for almost a whole week, and I haven't had any digestive episodes. And today, I was even watching from the living room as she made a sandwich and I watched her wash her hands and then put the meat and cheese out on a plate BEFORE putting her hands into the bread bag (which is how mom and my step-dad have been doing it), so maybe things are going to get better. I can always hope!

Thanks again!
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Gluten-Free since 5-10-11
Gall-bladder removed 8-7-09

Glad to be rid of daily intestinal revolt and a debilitating skin rash!

#15 come dance with me

 
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Posted 03 August 2011 - 02:16 AM

Happy to hear it :)
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Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...




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