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 To Deal With Questions At Social Situations?


hilwacat

Recommended Posts

hilwacat Rookie

Hi everyone, it's been a year since I was diagnosed with Celiac and I'm feeling great. I've adjusted to the diet, and because I'm feeling so good I don't view it as a sacrifice.

The problem is that it seems at dinners and family gatherings someone will ask a lot of questions. I'm sure they do it because they care, but it makes me feel singled out and embarrassed. Even the most basic details this condition are, to say the least, unappetizing.

How does everyone deal with situation?


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



Celiac.com Sponsor (A8-M):



Pegleg84 Collaborator

Hi,

glad you're doing well with the diet.

I try to be open about the whole gluten-free thing, though not blibber on about it too much. You shouldn't be embarrased to talk about legitimate health problems, but of course, if you feel uncomfortable, just say that you don't want to get into the yucky details. (bathroom problems are not always appropriate for dinner talk). Stick you your comfort level, only answer questions you want to, and i'm sure your family and friends will respect you for that. At the same time, its good to make them understand what Celiac is and why its so important for you to eat gluten-free. that's my take on it anyway

good luck

Peggy

one more mile Contributor

I answer the questions. I start general then get more detailed if people are interested and seem to be learning. I figure my discomfort may help the person if they develop this illness or if another person they know had the illness. One of the reasons my mom is so accepting of this is because a friend of hers got it when pregnant and explained it to her bingo buddies.

Usually I find the word "irregularity" sounds better then mention the big D at meals. but only really refer to that if questioned a lot. Since this is genetic I am more then happy to help open my families eyes. I suspect that some of them have the same problem as I do.

Takala Enthusiast

I have an atypical reaction to gluten and it gave me such bizarre problems (another autoimmune arthritis, kidney problems, early bone loss, and neuro symptoms mimicking MS) almost nobody would believe me anyway, so it doesn't matter. I just say most of my problems resolved somewhat other than the fatigue and lingering nerve damage, and I'm stuck with some arthritic changes, so I'm very happy to be able to function again. If they want the gory details they can hear all about the kidneys, that would make anybody's eyes glaze over. Hmm, what else.... the brain lesions are a good one. You see, if I list everything, yet I look normal enough, it sounds like I am making it up. Oh well.

Storm Apprentice

I got asked recently if it was by choice that I am gluten free and I was just following a trend with the rich & famous!!

I also got told that "Gluten free is for wimps" .... but my reply was "No... not for wimps, I just don't enjoy spending an hour with my head down the toilet after I have eaten any gluten based meal"

I have not had any other smart comments, but if people ask, I will tell them. If they offer me food, I will ask for it's ingredients or how it was cooked before eating it. I am not embarrassed about having Celiac Disease.... for me, it's a diet that I have HAD to change to for my health, simple as...

I would and always will be honest. You shouldn't have to justify your food choices to anyone, but if people ask, then don't be embarrassed to say so.

lizajane Rookie
I got asked recently if it was by choice that I am gluten free and I was just following a trend with the rich & famous!!

I also got told that "Gluten free is for wimps" .... but my reply was "No... not for wimps, I just don't enjoy spending an hour with my head down the toilet after I have eaten any gluten based meal"

I have not had any other smart comments, but if people ask, I will tell them. If they offer me food, I will ask for it's ingredients or how it was cooked before eating it. I am not embarrassed about having Celiac Disease.... for me, it's a diet that I have HAD to change to for my health, simple as...

I would and always will be honest. You shouldn't have to justify your food choices to anyone, but if people ask, then don't be embarrassed to say so.

yuck, what idiots...

i, too, vomit with gluten exposure. but rather than go into throwing up... when people ask me about celiac, i tend to go with the overall disease and most serious consequences.

my most common questions are:

how did you get it all of a sudden/how did you know after so long (i am almost 34)?

celiac can be triggered by stress, trauma, surgery, illness, pregnancy... mine was probably my 2nd pregnancy because i have been feeling really tired and awful for about 4 years and finally, my body just couldn't take it anymore.

so you can just not eat bread?

no, gluten is in all sorts of things. like soy sauce and vinegar. it isn't an allergy that makes me get sick for a day and then it is gone. it is an autoimmune disease.

but what happens if you just eat it anyway?

because it is an autoimmune disease, the body responds to the foreign invader- which is gluten- so you can end up with lymphoma. so yeah, i work pretty hard to not eat it because i rather not get cancer.

mysecretcurse Contributor

Personally I love when people ask questions, and I love answering them. I have no problem talking about myself. ;) lol

It's really a good thing, because the more awareness is spread, the better our lives get.


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



Celiac.com Sponsor (A8-M):



mattathayde Apprentice

im pretty open with it as i dont care much, if i am trying to be polite i say "digestive issues" or "lower gi issues". it also helps when i explain that the gluten is going into the blood stream and that any one would have most of the other issues if they had gluten in their blood streams ( from i have seen in research). honestly i dont care what others think about it, i get sick if i eat gluten and i dont want to get sick and poison my body so if some one is going to be a prick, screw them

-matt

heathen Apprentice

It stinks to be the only one who is "eating funny," but the more people you can educate about this disease, the better it will be. And with 1 in 133 people having Celiac Disease, you might actually help someone get the diagnosis they need!

mysecretcurse Contributor

So true. A friend talking about gluten and her family's issues with it was what led to me discovering I was also intolerant. Thank God! I'd probably not be alive now otherwise.

one more mile Contributor
It stinks to be the only one who is "eating funny," but the more people you can educate about this disease, the better it will be. And with 1 in 133 people having Celiac Disease, you might actually help someone get the diagnosis they need!

How true! Just last night I started talking to a woman about a totally other topic and she mentioned that she might be gluten intolerant so I told her what I knew and mentioned this web page to her. I would have never thought she was one of us but I hope I helped her a little bit. Sometimes it just helps knowing there are others around me dealing with the same thing.

mattathayde Apprentice

when i talk to people that have a laundry list of med issues (that seem to at least kind of fit) i tell them to look at it, i would bet that a few of my friends a a lot of my family has it but of course they just kind of listen then say what ever

looking back there was a kid i met a few years back that now i know he either had celiac/gluten intolerance or chrons but either way i wish i could get in touch with him again to tell him to look at gluten-free cause he was really really bad, he would go through bottles of pepto, he killed 1/4 of an industrial sized one in like 2 days, i only was around him for a weekend but it seemed like this was very common for him

-matt

taweavmo3 Enthusiast

This is still a struggle for me.....I'm really, really shy and any attention on me makes me uncomfortable. So shy that I actually begged people NOT to throw me baby showers, lol. So getting bombarded with questions about a disease that causes mainly GI symptoms for me? I'd rather stick hot pins in my eyes honestly.

But, I try my hardest in hopes that someone will benefit from even hearing about Celiac. At my daughter's birthday party a few weeks ago, my neighbor mentioned how good the gluten free cupcakes were, and that set off a firestorm of questions! It was good though....turns out the hostess eats gluten free, and one of the moms at the party has Celiac on her husband's side of the family. So of course, we swapped diagnosis details. One of the other moms starting asking me a bunch of questions, b/c a kid she knows has symptoms.

It's easier to talk about my child than myself though.....I still get uneasy when I have to explain (over and over again to the same people usually) my diet to people at work. I wouldn't mind, except sometimes I get the feeling people just ask to be nosy, not b/c they really care, kwim?

This is awful, b/c it's totally innacurate I know, but if I'm just not in the mood to field a gazillion personal questions and don't feel like giving the Celiac tutorial, I just claim "allergy" and call it a day, lol. That's bad, but sometimes you just need an easy out!

grey Explorer

I know what you mean - I always hated birthdays in school because everyone would stare at you during the singing! For that matter, I never sent anything back or liked to ask too many questions of waiters, etc.

In some ways, celiac has been good for me, learning to do these kind of things; it's gradually getting easier. Although, sometimes, I will avoid a situation if I feel too overwhelmed to answer questions.

Mostly though, I enjoy talking with people about celiac if they seem interested. I think it's funny that I ended up having celiac when I'm so embarrassed about talking about digestive symptoms. The most I'll ever say is "GI problems". Nobody, except those who are dealing with stuff themselves, has ever gone further, and nobody's ever - even when they have a laundry list of symptoms - asked me more questions! Sometimes I'll say something like your body can't absorb nutrients from food - without the details. "Multisystemic autoimmune disorder" ... and mention symptoms like fatigue and migraines.

One thing to remember is that most people don't embarrass that easily about this stuff, so it's really about your comfort level. (And that that's important too).

And, I too, when in public will sometimes default to food allergies, or even just "funky food issues"!

Lucky you to have found some people to talk with.

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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    3. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Son's legs shaking

    5. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

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

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    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

    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
×
×
  • 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.