Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

How Do You Make Then Understand What It Is!

roddi

Recommended Posts

connole1056 Rookie
connole1056
Posted

I would not worry about offending your hosts if they are not worried about giving you gluten! People who care about you will want you to be healthy! I would not be offended if someone asked me about what I put in my food.

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

Celiac.com Sponsor (A8-M):


  • Replies 62
  • Created
  • Last Reply
stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

We just had the our women gymnastics team meeting. Usually we hold it at one of the women's house and everybody brings something to eat. Cause I wasn't sure, what time it started, I called one of the other women ahead and then we got to talk a little bit. By the way, they all know, I can't have gluten. And she said, "Oh, and you can have mine, it's without gluten..." I told her then, that I rather not have it, because she doesn't know anything about feeding me safely and there could be hidden gluten. She didn't understand at all. Then when we were at the meeting, we had some vegetable with a dipping sauce in the middle. I only ate the vegetable and the chinese wrappers I had made. Then I took the dipping and looked at the label, put it back on the table and went on with my eating the vegetable without dipping. Couple of minutes later somebody asked me, why I don't eat the dipping. And I told them, there was probably gluten in it. :blink: They looked at me like I was stupid and I got these "since when does dipping have wheat in it"-questions. I just replied as ignorant as they talked to me: "What do you think they bind it with? Already heard of wheat flour? And do you know what modified food starch is???" Then, probably to try to get their right...whatever. Another one said: "Oh, just try my potatoe salad." I replied: "What's this white sauce on it?" She said, it was Mayonnaise. I replied, Bingo, same thing, even Mayo has this in it.

Darn, people are really ignorant. Then just as if they wanted revenge, only one of the women ate my wrappers. To damn bad, then I had all the good wrappers for myself. Yippie! :lol: People are really stupid sometimes... <_< I told them, if they are really interested in feeding me the right way, that I could teach them. But they would need to know certain brands that state these things on the label and the right kitchen supply. That was it, end of discussion. I guess nobody bothers me again...lol.

Guest Eloisa
Guest Eloisa
Posted

People are just so inconsiderate and always feel insulted because you refuse to eat what they make or whatever they bring. Most people don't understand when I say I can't have wheat so they automatically think that I can eat white bread or white pasta. I have up explaining what wheat was and just tell people flour or anything used as a thickener. Some people are just not worth the trouble of explaining cause they'll never understand.

phakephur Apprentice
phakephur
Posted

Stef,

Your insensitive friends have inadvertently put their finger on the rub. Wheat and its derivatives generally don't belong in salad dressings or potato salad or ice cream or a myriad other things, but there it is. It's not giving up Bunny Bread that makes the diet so tough, it's having to dodge all the bastardized foodstuffs.

I can't wait until next year. "Natural flavor" is really chafing my hide lately.

Sarah

stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Hello Sarah,

what is next year. Did I miss something? Please inform me, if I did. I haven't been here for quite a while.

jenvan Collaborator
jenvan
Posted

I understand Stef. I am renting a cabin with some friends this weekend and my friend went grocery shopping for it, and explained all the things to me that I "could" eat that she got, and I replied to most of them.... "sorry, can't eat it !"

KaitiUSA Enthusiast
KaitiUSA
Posted
Hello Sarah,

what is next year. Did I miss something? Please inform me, if I did. I haven't been here for quite a while.

I don't know if this is what she is talking about but a bill came out that passed that companies must list whenever their food contains the top 8 allergens(which includes wheat) Even though this won't cover rye, barley, or oats it is a good step for them. Natural flavoring would have to say wheat by it if it contains it, and that kind of thing...I believe this comes effective in the beginning of 2006

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

Celiac.com Sponsor (A8-M):


stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

Ah, yes, I heard about this bill, too. Well, then we definitely know where wheat is in, hugh? But it won't help us much, cause we still don't know, what we definitely CAN have.

@ jenvan: I read the post you wrote about this weekend in the cabin. I didn't reply, but if I was you, I would go with my "gut" feeling. Means, if you don't want to go and you're tired, just don't go. Your body knows what it needs. And don't feel bad about it. There will come another opportunity...

Guest Eloisa
Guest Eloisa
Posted

I heard the same thing from a close political friend who works in Washington about this Bill too. I'm hoping this will give us more choices in the future on what we can grab and eat.

  • 5 weeks later...
Guest kmmolina
Guest kmmolina
Posted

Rob, the family has been one of my biggest challenges. I married into a very large Mexican family where food is apart of every social occasion...even just a 15 minute visit. At work, where we were going out to eat every day, it isn't much easier. :o AND I'm getting tired of being the center of attention and talking about it 20 times a day. :blink: So, what I started doing this weekend is I prepare my own meal and take it with me. There is a rice pasta by Tinkyada that is really good...not mushy. I made macaroni salad, took my own meat, veggies, and fruit. Even my own corn chips and salsa. This seemed to relieve some of their gulit for not feeding me, which reallyl isn't their reponsibility. I am also learning to ignore the ignorant. I thought finding the right foods was going to be the most frustrating, but this family/friends issue is really at the top of my list. Good luck in find your way. :)

Kathleen

Guest Eloisa
Guest Eloisa
Posted

I come from a Mexican family and totally understand. Now after me being celiac they have made sure that they cook everything with natural ingredients with lots of corn tortillas.

Guest kmmolina
Guest kmmolina
Posted

I'm still so new to this that I don't always ask the questions I should. A couple of weeks ago my sister-in-law brought over some rice with fideo in it. Not even thinking I ate a lot of it. The next day I really had some intestinal issues and started thinging back on what I had eaten. Between the fideo and maybe the tomato sauce she used...well, anyway, since then I have been taking my own food. I'm constantly learning and educating.

  • 4 weeks later...
ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

We need to wear flashing signs in the middle of our foreheads. Listing

Toxic Food that is KILLING US! So each time we don't have to explain to people who don't understand.

I like that web set you-don't-look-sick-dot.com...they are right people don't get it!

I feel the same way too, being Italian -- my entire life with sweet cream butter on Italian bread, pasta, macaroni, cheese, canolli's, cheesecake, capacinno... :wub: Oh, I could just died now. :o I can't e-v-e-r - <_< - n-e-v-e-r eat them again. :o No wedding, birthday, or créme brulée. :angry: Oh God why?! :lol:

So how do we make the world wake-up and take notice to Celiac-Sprue?!

We need to find some major celebrities who are suffering, as we are with CS, and get an awareness movement going.

First I think, we or it, has to have a name that people can say and remember. Like TOXIC Food Disease, or something else then what it is. When I say, "I have Celiac Sprue", people look at me like, "...what? How do you say it? Do you spell it with a S, or is a who? ...Gluta Huh?" :wub:

Where did the sillyak name came from anyway? :rolleyes:

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...