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

How Do You Make Then Understand What It Is!


roddi

Recommended Posts

connole1056 Rookie

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

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

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

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

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

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
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

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

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

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

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

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

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.

  • 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 JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748

    kathleen apodaca
    Newest Member
    kathleen apodaca
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.