Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

How Do You Make Then Understand What It Is!
0

63 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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 !"

0

Share this post


Link to post
Share on other sites
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

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,133
    • Total Posts
      919,526
  • Topics

  • Posts

    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Is coffee glutem free or not ?  Always wondered about this ............. got to have my coffee... I am new to this  , very new .........
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,167
    • Most Online
      1,763

    Newest Member
    georgemathews
    Joined