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

Coping With Uninformed People


JaniceS

Recommended Posts

Skylark Collaborator

I've been known to say "it's not polite to talk about what happens to me if I eat gluten at the dinner table." That one shuts people up fast. :lol:


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



Celiac.com Sponsor (A8-M):



come dance with me Enthusiast

I've been known to say "it's not polite to talk about what happens to me if I eat gluten at the dinner table." That one shuts people up fast. :lol:

Haha nice!!!

WinterSong Community Regular

Amusing story:

I went out to lunch with three of my family members: my very informed and supportive father, my grandfather (who does everything my grandmother says), and my crazy Jewish grandmother (not to stereotype - she's just a very Jewish woman who happens to be a little off her rocker - this is the same woman who told me, "I think I might have a little bit of the celiac").

The restaurant had gluten free options (and very delicious bread!). All three of them knew about my gluten/lactose intolerance and my father basically explained that no one is to touch my food, and I can't eat anyone else's.

When the bread came out:

GM: How come she gets her own dipping oil for bread?

Dad: Because her bread is gluten free, and she can't share the same oil that we're using.

Halfway through lunch as GM was eating her salad (with cheese on it):

GM: Mmmmmm, this salad is so wonderful! Jessie, would you like some?

Dad: No, Mom! You can't have any of her food and she can't have any of your food!

GM: But it's a salad.

Dad: But it has cheese on it! And you just ate normal bread, so the fork that you're using has gluten on it. She can't eat your food.

Nearing the end of dessert:

Me: My flourless chocolate cake was so good! How was your sorbet, Dad?

Dad: Great!

GM: Why don't you try some, Jessie?

Dad: NO, MOM!!! I can't have any of her food and she can't have any of my food!! The spoon that I'm using has gluten on it because I had pasta for dinner.

GM: But she can try that bit on the side - your spoon hasn't been there.

Dad: Mom! My spoon's been everywhere!

The funnies thing was my dad saying, "NO, MOM!!" about six or seven times during the course of dinner. Thank goodness he understands. :P

domesticactivist Collaborator

I think the first lady sounded genuinely curious. I like to assume that everyone who asks 'stupid' questions is just misinformed and really wants to know more. Just like talking sex ed with the kids, start with a little info and let their questions guide the way! I don't like the idea to say 'allergy' though. Spreading misinformation doesn't help in the long run.

I am disgusted by the number of people who think diet has to be about weight, or that what you eat is a commentary about what they put in their mouths. Those people are only worth dealing with if you actually can't avoid them.

GlutenFreeManna Rising Star

Amusing story:

I went out to lunch with three of my family members: my very informed and supportive father, my grandfather (who does everything my grandmother says), and my crazy Jewish grandmother (not to stereotype - she's just a very Jewish woman who happens to be a little off her rocker - this is the same woman who told me, "I think I might have a little bit of the celiac").

The restaurant had gluten free options (and very delicious bread!). All three of them knew about my gluten/lactose intolerance and my father basically explained that no one is to touch my food, and I can't eat anyone else's.

When the bread came out:

GM: How come she gets her own dipping oil for bread?

Dad: Because her bread is gluten free, and she can't share the same oil that we're using.

Halfway through lunch as GM was eating her salad (with cheese on it):

GM: Mmmmmm, this salad is so wonderful! Jessie, would you like some?

Dad: No, Mom! You can't have any of her food and she can't have any of your food!

GM: But it's a salad.

Dad: But it has cheese on it! And you just ate normal bread, so the fork that you're using has gluten on it. She can't eat your food.

Nearing the end of dessert:

Me: My flourless chocolate cake was so good! How was your sorbet, Dad?

Dad: Great!

GM: Why don't you try some, Jessie?

Dad: NO, MOM!!! I can't have any of her food and she can't have any of my food!! The spoon that I'm using has gluten on it because I had pasta for dinner.

GM: But she can try that bit on the side - your spoon hasn't been there.

Dad: Mom! My spoon's been everywhere!

The funnies thing was my dad saying, "NO, MOM!!" about six or seven times during the course of dinner. Thank goodness he understands. :P

Wow! Is your GM related to my MIL? This is very similar to something I could see her doing. I call them "food pushers". They're not happy unless they make someone else eat something. It really doesn't make any sense to me at all. Even if you had no food restrictions you may not LIKE whatever she is pushing you to eat or you may be FULL or a million other reasons. She wasn't just trying to get you to just eat HER food which is really strange. She was trying to give your dad's food to you!

ErinP Newbie
I am disgusted by the number of people who think diet has to be about weight

Particularly irksome is when it's obvious you need to lose weight and then have to explain that no, you're avoiding grains because of an autoimmune disorder. :rolleyes:

Don't challenge people's expectations with a pie that frankly isn't likely to taste anywhere near as good as its wheaten equivalent. We are used to the flavor and texture of gluten-free food but most average folks are just plain disappointed by them.

I agree!

This is just as bad as vegetarians giving you meat-looking foods and saying they're just as good. No they're not! And don't make it LOOK like meat, because then my brain expects it taste like the real thing and it's even more disappointing. lol

Twizzel Rookie

My problem with the human race is so very few of us are open minded. Americans (if you are born and raise in the US like me) especially seem to be intolerant. I am from the US, so maybe I am biast...but I am not impressed with most people I know here.

Its seems like most Americans have "Its my way or the highway type attitude". Like they even call themselves American as if thats all of America. America has 2 continents, North and South...it also has many countries in each one. So to assume when you should be internationally known as AMERICAN, when its only a portion of AMERICA and apparently nothing else matters but the US...its rather narrowminded and not accomadating of others. And even worse, the entire country catches on to this and it becomes the standard. All because someone couldn't think of a creative label that was more catchy than "United States-ian".

Anyways, I am saying this as a metaphor for your obviously intolerant experience. Even the woman who walked away when you were talking about gluten. Like why didn't she just say "Oh, I am sorry. I dont know what that is?" God forbid if someone were to admit they don't know something. People are so afraid to come off like they don't know anything.

The reality of my life is, I have my family who loves me, animals, and about 3 true friends. But whats awesome, is that is all I need. I am open to other people, but I usually expect others to not take the time to understand me, even after i try to understand them.

The real truth is we are all struggling to figure out why we are here. Life is hard. All that matters is your positive attitude. Focus on good things. I bet if you look at that party, not everything was bad. Best of all from what I see...Its really awesome you know whats wrong with you now and that you can fix it.


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



Celiac.com Sponsor (A8-M):



mommida Enthusiast

America is the most tolerable country in the world. I'm sick of too many constantly bashing Americans. Even if you are just visiting you have freedom of religion and free speech all the freedoms we are given, are given to you. Americans consistantly give to charity that help worldwide organizations.

So don't turn one ignorant person at a picnic into another rant against Americans.

annegirl Explorer

Yeah, I really have to second mommida here. I have traveled the world and have talked and interacted with many people from different races. I've met kind Europeans, and Europeans that wouldn't spit on me if I was on fire. To say that all Americans are one way is a sweeping generalization that cannot help but be false. Some Americans are rude. It has NOTHING to do with their nationality and everything to do with the fact that they're just rude.

As for the labeling, the term "American" predates all of us. Hey, if you want to come up with a new term feel free! After all, that is what the US is all about. ;)

cap6 Enthusiast

Some people know what Celiac is but for those that don't I say that wheat makes a hole in my intestines.

I have found that the teenagers are better accepting or have more understanding of the basics. They have all had kids in school allergic to foods so they just take it in stride. When someone asks how I can eat my bread, I just say that its made with rice flour.

My oldest is not gluten-free. For his 18th birthday, he wanted the gluten-free chocolate cupcakes I make. His friends eat them up. My 15 year old said that teenagers don't care if its made with rice flour or dirt, as long as it tastes good.

Educating the kids is the best way to go. My 8 yr old granddaughter understands the basics and picks out the gluten-free food in the grocery store and always asks me if something is ok. And so heart warming was my oldest grandson who would only have his high school graduation dinner party in a restaurant where I could eat too. The kids wanted to be sure Grandma could eat too! :D

Marilyn R Community Regular

It helps so much to learn here, and to be able to vent.

I bet the co-workers that commented on your slim frame were overweight! (I usually thank them for their concern, let them know I'm getting better, and walk away thinking about how they're going to stuff another donut hole in their mouth.)

Here's how I stopped the (it seemed like daily) derogatory remarks about how skinny I am. I told one of the women who likes to gossip (and is overweight) that it amazed me how nobody ever said a word to me when I was heavy, but now that I'm underweight they feel free to say "ANYTHING". Then I gave a few examples of what co-workers said to me.

The discussions at work about my bodyweight ceased in 24 hours, and it's lasted a few months. They ask me about what I'm eating, but I'm ok with that. They're just food focused, and I guess we have that in common now. :rolleyes:

Korwyn Explorer
Don't challenge people's expectations with a pie that frankly isn't likely to taste anywhere near as good as its wheaten equivalent. We are used to the flavor and texture of gluten-free food but most average folks are just plain disappointed by them.

OK Skylark, usually I agree with a lot of what you say, but I have to (almost) take offense at this. Before going gluten-free I used to bring desserts to company BBQ, desserts or pasta salads for our Relay for Life BBQ every other Friday, make breads for various functions, etc. I don't recall getting asked for a recipe more than a handful of times in several years of doing this prior to my Celiac diagnosis. Now I regularly get asked for recipes and how I baked something or made some particular dish. I have given more recipes out in the last 2.5 years I've been gluten-free than in the previous 5 years combined.

Even though I rarely bake for myself anymore (being primarily paleo/GAPS), I think I've become both a better baker and cook (though I've been told frequently I was very good cook prior - I used to do it for a living). I've been forced to become so much more aware of the science of cooking and baking as well as the art.

Korwyn Explorer
I bet the co-workers that commented on your slim frame were overweight! (I usually thank them for their concern, let them know I'm getting better, and walk away thinking about how they're going to stuff another donut hole in their mouth.)

ROFL...Thank you for the laugh! I seriously did LOL at the mental picture because I've had that same conversation with a very overweight co-worker who I think is jealous that I've lost 50lbs (22kg) since going gluten-free.

Here's how I stopped the (it seemed like daily) derogatory remarks about how skinny I am. I told one of the women who likes to gossip (and is overweight) that it amazed me how nobody ever said a word to me when I was heavy, but now that I'm underweight they feel free to say "ANYTHING". Then I gave a few examples of what co-workers said to me.

The discussions at work about my bodyweight ceased in 24 hours, and it's lasted a few months. They ask me about what I'm eating, but I'm ok with that. They're just food focused, and I guess we have that in common now. :rolleyes:

That is a fantastic way to use their own gossip against them! I love it! :D

sburton Newbie

I am a corporate entertainer. This usually means that I am performing following a company banquet. I am always invited to eat beforehand (but prefer not to even though most hotels now could cater to me). I keep it simple: "Thank you but, because of food allergies, it's best for me to avoid feeling ill before my show." I realize that "allergy" is the incorrect word to use but it is understood quickly rather than "celiac" which has little reference points for most people and "disease" which gets people feeling sorry for me. This allows me to quickly move on and get down to the real business.

For personal social occasions where there are more opportunities and time for conversation, I mention that "I have celiac disease and would rather enjoy my evening with you than eat and have to worry about what food may make me sick". This is almost always followed by questions which I have learned to answer honestly because people seem to be interested. This does it's job, is honest, and expresses that the reason I am there is for them and not the food.

I notice more post-diagnosis than ever before how much of our life's events revolve around food. I also realize that removing myself from certain social norms does provide some discomfort for many others. This is not their fault nor is it ours - just know that some don't know how to react and their well-meant responses are not always the best choice.

Anyway, that's just one man's approach :)

Skylark Collaborator

OK Skylark, usually I agree with a lot of what you say, but I have to (almost) take offense at this. Before going gluten-free I used to bring desserts to company BBQ, desserts or pasta salads for our Relay for Life BBQ every other Friday, make breads for various functions, etc. I don't recall getting asked for a recipe more than a handful of times in several years of doing this prior to my Celiac diagnosis. Now I regularly get asked for recipes and how I baked something or made some particular dish. I have given more recipes out in the last 2.5 years I've been gluten-free than in the previous 5 years combined.

Even though I rarely bake for myself anymore (being primarily paleo/GAPS), I think I've become both a better baker and cook (though I've been told frequently I was very good cook prior - I used to do it for a living). I've been forced to become so much more aware of the science of cooking and baking as well as the art.

Fair enough. I was mostly talking about things like breads, pie crusts, and cakes where the wheat is important for the flavor and texture. I've made gluten-free cakes that tasted fine to me, but my friends said they were good but not like wheat. Flourless cakes are obvious winners and I've passed Pamela's gluten-free brownies off as regular and gotten complements on them.

Gluten-free graham crackers are another that just don't work right. The whole point of graham crackers is wheat and honey. :P It's like trying to make a gluten-free Triscuit. I guess that's why I wasn't surprised people reacted oddly to a s'mores pie made gluten-free.

I also don't think gluten-free breads will ever come close to the freshly baked baguettes I had in France, or to my homemade whole wheat bread where I used to spend a half hour stirring up the gluten and kneading it to get the perfect texture and crumb. The wheat was an integral part of the flavor and gluten-free grains simply taste different. Not bad; just different. I like breads with buckwheat or teff, but I can't pretend it tastes the same as wheat, or that it won't take glutenoids by surprise. Even Udi's or Rudi's can't come close to the beautiful texture I used to get in my homemade breads. (I even added vital gluten for pumpernickel. Ack! Foo!)

If you have a pie crust to die for, please share. I have yet to manage a proper, flaky, tender pie crust. I've made passable ones with Jules flour, but nothing like what I used to be able to do with wheat. I miss making apple pies from scratch.

On the other hand, my friends love my oat flour scones, old-fashioned corn bread, apple cobbler with cinnamon oatmeal topping, and flourless chocolate cake. :) I prefer to make naturally gluten-free foods and they are always well-received.

WinterSong Community Regular

Actually I make a gluten-free buckwheat bread that is incredible. I was surprised when it came out of the oven that it had the same texture and amount of flavor as regular bread. None of the pre-made breads I've tasted have even come close to this one.

And I've passed off my gluten-free chocolate chip cookies as normal ones. I made them for some people who loved my original recipe, and they couldn't tell the difference.

:D

Skylark Collaborator

Could you share the buckwheat recipe? Mine tastes good but the texture needs work! :lol:

WinterSong Community Regular

Sure thing! :)

Skylark Collaborator

Sure thing! :)

Thanks! Do you think my Jules gluten-free flour would work for the flour blend? I have Arrowhead Mills mix around too if that one is better.

WinterSong Community Regular

Thanks! Do you think my Jules gluten-free flour would work for the flour blend? I have Arrowhead Mills mix around too if that one is better.

You're welcome! I haven't tried any other flour blend with this recipe, but I'm tending to think that most balanced blends would work fine. Good luck and let me know how it comes out! :)

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

      Fruits & Veggies

    2. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

    3. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    4. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

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

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748

    KimberlyS
    Newest Member
    KimberlyS
    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

    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
×
×
  • 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.