Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Frequent "glutenings"


Elfbaby

Recommended Posts

Elfbaby Apprentice

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



come dance with me Enthusiast

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.

Roda Rising Star

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.

ravenwoodglass Mentor

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.

kareng Grand Master

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?

Jestgar Rising Star

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

eatmeat4good Enthusiast

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Skylark Collaborator

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.

Nxsquid Newbie

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. :/

Reba32 Rookie

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

kareng Grand Master

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.

Open Original Shared Link

aeb Newbie

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.

Medusa Newbie

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!

Elfbaby Apprentice

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!

come dance with me Enthusiast

Happy to hear it :)

Jestgar Rising Star
:) You sound like a very patient person. I'm glad you're wiling to work through this.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.