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Why Do We React With Anger When People Do Not Get It?

Chad Sines

By Chad Sines
in Coping with Celiac Disease

Recommended Posts

Chad Sines Rising Star
Chad Sines
Posted

It amazes me how upset we often get when friends, family, and coworkers do not "get" Celiac. A lot of our posts here revolve around waiters who do not get it, store managers, and other food prep people. But in all honesty how many of us had any clue about Celiac before we realized we had it? Even with all our research since that diagnosis, we are still learning. I have to say despite my medical training I did not get it at all other than the avoid gluten thing. I think we need to learn to give the world a break.

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kareng Grand Master
kareng
Posted

It amazes me how upset we often get when friends, family, and coworkers do not "get" Celiac. A lot of our posts here revolve around waiters who do not get it, store managers, and other food prep people. But in all honesty how many of us had any clue about Celiac before we realized we had it? Even with all our research since that diagnosis, we are still learning. I have to say despite my medical training I did not get it at all other than the avoid gluten thing. I think we need to learn to give the world a break.

What the H#%% are you talking about, You %&$% Red Solo Cup! :angry:

:D

I try not to get mad if people are asking honest questions, politely asked. I would be mad if a place has a gluten-free menu & the servers seemed clueless. I guess if my hub or family just kept refusing to listen or even try I would call them an %&$% Solo Cup.

I had a bartender ask lots of questions about it. Thought this is odd. Turns out his younger bro just got diagnosed with Diabetes 1 & the doc had told his whole family to be tested for Celiac as its much more

prevalent in the families of D.M. patients.

Disclaimer- I was kidding in the first line.

IrishHeart Veteran
IrishHeart
Posted

Angry? who's angry?! F you buddy. :angry:

:lol:

Chad, This is what I was trying to say in another thread earlier today. Try to be patient because not everyone has the knowledge. Hell, I have been reading everything I can about this disease for 2 years and I still am learning.

Who among us knew what celiac or gluten was before we had to learn about it? Anyone? Anyone? Bueller? :lol:

Educate the masses. Explain. It takes just a minute.

If someone in your life knows about it-- and still gives you grief or is just plain rude or cruel --that's different. (that may be grounds for getting my anger on!)

And I am with Karen--if a restaurant offers gluten-free items, the staff should be prepared to answer questions and handle the food with care.

I had a chef ask me tons of questions when we spoke after I was glutened at his upscale restaurant. He was very upset because he went to great pains to educate his staff and make his kitchen a place for allergen-free prep. Turns out, the gluten-free cake I had tasted was from an outside bakery and he never thought it would be an issue. He was very grateful I told him what happened and sent me a gift certificate for dinner and wants me to come into the kitchen, meet him and see all the gluten-free pastas he has. :)

I have educated my dentist, massage therapist, physical therapist, and many others. They wanted to know. I was happy to explain.

(I can't get my own extended family to hear me out!) I choose my battles. :)

We can be ambassadors or we can be "surly celiacs". But, how does that promote our cause?

Disclaimer: I was kidding in the first line.

Juliebove Rising Star
Juliebove
Posted

I got it at least partially before my daughter was diagnosed. I must say she has food allergies and not celiac so not quite the same. I post to a diabetes newsgroup and a man there had a wife who had celiac. He explained that she could not have a salad that had so much as one crouton on it that had been picked off. So that part I got. But I didn't understand all the ways in which a food could become cross contaminated. Such as a shared fryer. And I didn't know to read every label every time. I had to learn that the hard way.

I also do not work in the food industry. And I don't want to for many reasons. But if I did, I know I would be very careful with the food.

I also think I am more cautious than most people when it comes to giving food to children. There is no way I would offer any sort of food to a child unless I spoke with the parents first. If I have a child at my house, I always ask the parents things like... Is there anything they are allergic to? Is there anything they shouldn't eat? I was very careful with my daughter's diet even prior to the food allergies. There were certain things she just was not allowed to eat and drink.

I get annoyed because I not only have food allergies but diabetes. And that's another thing people don't understand. Sure there may be some diabetics who will eat whatever they want, whenever they want. I have seen them. I will reserve my opinion on that! I am not one of those people. So I tell people... Please do not offer me any food. I can eat when I can eat and no other times. So if you invite me to a meal at some odd time like 2:45, do not expect me to eat! If you are having cake and ice cream for a birthday, do not expect me to eat it. And please do not try to come up with some alternate food for me because I can not eat it, whatever it is.

I would say that I maybe don't get all that angry but just frustrated. I have always tried hard to remember what people are allergic to and what they can't eat. My brother has an aversion to mushrooms. My SIL has an aversion to mashed potatoes. She will eat any other form. Just not mashed. My friend has an aversion to coconut and she also can not eat onions or any form of peppers because of GERD. My mom also can not eat onions, peppers and is not supposed to eat wheat or eggs but she does. Wheat bothers her arthritis and she is allergic to eggs. I also know that I am not supposed to mention her diet to her. She is very touchy about it. So if she does eat wheat or eggs I had best just shut my mouth and not say a thing. And then I am expected to provide sympathy when she gets sick afterwards.

So yes, it is very frustrating.

Chad Sines Rising Star
Chad Sines
Posted
  • Author

I get the educating the masses and agree with that. i was reading older posts here and on other sites today and it just seemed to me that there was a recurrent theme where we transfer our anger about the disease onto people who do not understand/have it. That thought intrigues me.

red island Newbie
red island
Posted

I think that there is a higher incidence of venting here because we don't want to be always complaining about our situation to the people in our lives. Speaking for myself, I have already had friends distance themselves since I have been diagnosed and am afraid that the people I have left in my life will get sick of hearing me vent. I try to keep things informative and add a bit of humour when I am talking to them but honestly, there are times when you just have to let off steam and this forum is perfect because everybody here understands and is going through the same thing.

Chad Sines Rising Star
Chad Sines
Posted
  • Author

that is a good point.

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kwylee Apprentice
kwylee
Posted

Why Do We React With Anger When People Do Not Get It?

I think your answer is in your question. They're reacting.

Years ago I was property manager for a high rise office building downtown. One day in a staff meeting a building engineer commented that he couldn't keep up with the machines dispensing the feminine products in the buildings' ladies rooms, seemed the knobs constantly needed fixing. Now, I'm female and never held back with a staff of men. I explained to him that it was natural for these machines to see this type of wear and tear, given that everyone who used them was having a bad week. Once the engineers considered this, they never really complained about it again.

I think that people who react are really just projecting other feelings, like fear, physical pain, maybe even despair. My guess is they stop reacting so much once they feel better. I've heard some bonehead things come out of the mouths of doctors and others regarding gluten, but I've honestly never gotten mad at them. But I've also never felt as much fear, physical pain or despair as many have on this forum. I just try to show the reactors as much tolerance as I give the boneheads who don't understand about gluten. Because I understand they don't understand...yet. ;)

Skylark Collaborator
Skylark
Posted

For me the anger comes when the person who doesn't "get it" has put me in a position where I am forced to either risk eating gluten or not eat entirely. I've gone to both formal and family events where bringing food was impractical, I thought I had made arrangements, and gotten to the event to find out that whatever idiot I talked to on the phone lied about some aspect of having gluten-free food. Something looks suspicious and I can't verify ingredients; sometimes the gluten-free food is not there; more than once after eating that a meal I had been assured was gluten-free I was told "oops" it had a gluten ingredient. It seems pretty natural to me to get angry in that sort of situation, particularly if I'm in for a ruined evening because I've essentially been poisoned. I see people get angry about a lot less.

tennisman Contributor
tennisman
Posted

My Mum was diagnosed with celiac disease when I was 10 and I understood it well and I was only 10 ! Even my italian granny who doesn't understand much english or italian :S understands celiac disease and how we can't have any gluten . I think a lot of people not all but a lot act stupid on purpose to get a reaction out of us .

IrishHeart Veteran
IrishHeart
Posted

I get the educating the masses and agree with that. i was reading older posts here and on other sites today and it just seemed to me that there was a recurrent theme where we transfer our anger about the disease onto people who do not understand/have it. That thought intrigues me.

I think many people vent anger ON HERE so they do NOT vent on other people. It's safe and we GET IT.

That's what a support forum is for! :)

mommida Enthusiast
mommida
Posted

We've been gluten free over 7 years now. It is just the occassional person that gets on my nerves. People really over step their bounds, especially when children are involved. I do try and post about about the nice things people have done. Like handing me new food items, saying I found these and they are labeled gluten free so I bought this for you. :D

I usually tell people that you will find out who you friends are. :)

You would have this post up during f(*&n Fat tuesday when everyone is scarfing down frickin Paczki (Polish stuffed doughnuts)

codetalker Contributor
codetalker
Posted

For me the anger comes when the person who doesn't "get it" has put me in a position where I am forced to either risk eating gluten or not eat entirely.

A very long time ago, I worked in a child care facility for troubled kids. One of the things we were taught during our training sessions was that anger usually comes from frustration. When people experience frustration, that frustration can express itself as anger.

It is safe to say that the life of a celiac is one of constant, continual and unrelenting frustration. Even

kareng Grand Master
kareng
Posted

Sometimes its just "fun" to say what you would really like to say, but wouldn't because it really isn't appropriate. :ph34r:

I have to say that people who don't think white flour/bread is made with wheat does confuse me. the wheat seems to be referenced in commercials, TV shows, books, Middle school cooking class & health class, Church (bible)....lots of places.

IrishHeart Veteran
IrishHeart
Posted

I think we have to accept that:

- there are people who will never

IrishHeart Veteran
IrishHeart
Posted

Sometimes its just "fun" to say what you would really like to say, but wouldn't because it really isn't appropriate. :ph34r:

that's why we say it here :lol: :lol: :lol:

IrishHeart Veteran
IrishHeart
Posted

You would have this post up during f(*&n Fat tuesday when everyone is scarfing down frickin Paczki (Polish stuffed doughnuts)

:lol: :lol: :lol: :lol:

sorry, mommida :(

I had someone tell me she was "giving up" candy for lent. Another told me "alcohol".

I was thinking...Really? please, do not tell me about what you are "giving up" for 6 weeks.

:rolleyes:

tennisman Contributor
tennisman
Posted

A very long time ago, I worked in a child care facility for troubled kids. One of the things we were taught during our training sessions was that anger usually comes from frustration. When people experience frustration, that frustration can express itself as anger.

It is safe to say that the life of a celiac is one of constant, continual and unrelenting frustration. Even

codetalker Contributor
codetalker
Posted

Here is what I have learned:

We cannot change the way people behave/think,

we can only control how we respond to those people.

Likewise, well said. Now, if I can just remember to practice this.

cavernio Enthusiast
cavernio
Posted

Because I tell someone about it and they still don't get it. When you tell someone something, you expect that they'd get it. For instance when I was talking about getting an appointment with a gastroenterologist, my mother inlaw was like 'Oh, so you're not certain that you have it?', despite me saying that I had blood tests showing that I did. It's the feeling that I get when someone thinks I'm being unreasonable. I dunno what I'd do if I had only self-diagnosed myself like my very sick cousin ended up doing, and having to deal with the skepticism that people would show me.

I also have an online friend who was like 'Well, its just an allergy, and if you do things right, you can actually overcome the allergy. I had a friend who couldn't eat nuts but a doctor gave him miniscule amounts of nuts to eat, and now he's fine.' And then there's websites which quote some Dr. Crook (seriously, Crook is the name this guy/gal published under...)who says celiac doesn't exist, its just a yeast infection...so of course if you meet someone who thinks celiacs aren't real, and they think they know better than you, they won't even believe you.

Of course, I don't expect people to know what it is and what it's all about either. I usually say that I can't eat a protein in wheat and some other grains, gluten. Then I say that for most people this sticky protein isn't an issue, but my immune system is messed up and it reacts badly to that protein, and while attacking the protein, it also attacks my own intestines (to where the gluten attaches itself). If they're friends or whatever, I then say that the damage is reversible, but only over a period of months/years of not eating gluten. The most important thing I think is to say that it damages me, because I think that is key in making someone understand. That's why it's such a serious disease, afterall. You wouldn't risk serving peanuts to someone with a peanut allergy because you can visibly see the consequences right then and there. But it feels like because being a celiac isn't a life or death situation, and that the reaction isn't going to happen right there in front of the person who fed you the gluten, people think it's OK to not be quite so careful.

Before being diagnosed, for about a year I was semi-vegetarian...semi because I would freely eat any animal product including meat from an animal that I feel was treated humanely, (which most factory farmed animals aren't.) Now there's a stigma...no one follows a diet like that, I was shunned by meat-eaters and vegans alike! (Especially with it being common to not eat meat simply for environmental issues these days, and since humanely raised animals are apparently a blight on the earth, taking up all that space and whatnot...I'm not a popular person) I ended up not even bothering to tell my inlaws because I knew they'd think it weird and then we wouldn't go over there as often since we only go for dinner it seems, and that wouldn't sit well with my partner of course, etc, and just ate the food they served.

(I still follow that diet for my own cooking, but have given up on that in regards to everyone else.)

I guess I haven't really been really angry with someone over being a celiac yet, although my bf gets irked about it. And I had only gotten angry with my mom over my veg diet because my sister IS a full vegetarian, and she never screwed that up. But I suppose I expect people to not get it.

I think someone raised a good point re diabetes though. Most every diabetic I know will eat food they shouldn't. It must be awfully annoying for someone who IS being the best damned diabetic they can be to have people not quite get it, and know that other diabetics might be to blame. Geez, I had never heard that diabetics must always eat at certain times of day actually...I mean, I guess I knew since they have to regular blood sugar, but I always figured a small snack here or there would be probably be fine.

I'm actually really, really glad to see that people who are celiacs DO follow strict no gluten rules. I know I would be easily influenced to not be so careful myself if gluten-eating celiacs were common.

IrishHeart Veteran
IrishHeart
Posted

Likewise, well said. Now, if I can just remember to practice this.

me, too. :lol: :lol: :lol:

not always easy :rolleyes:

codetalker Contributor
codetalker
Posted

Wow that's quite a bad , I hate people who make fun of celiac disease.

Truth be told, that radio clip was so egregious that it was actually bearable. My reaction was basically to shake my head in disbelief, especially in view of our culture of political correctness.

Adalaide Mentor
Adalaide
Posted

I don't generally get angry when people don't get it, but I can get frustrated. I find that some things that should be completely idiot proof are what frustrate me the most. "White bread is fine right?" Seriously? Stupid much? I can not figure out how someone can make it to retirement and not know that white flour is made from wheat, did they live under a rock for 80 years? I mean... come on.

When it's just plain ignorance though I'm happy to answer questions as much as I can although I agree that I shouldn't have to educate the staff at a restaurant that offers a gluten free menu. If they have no clue what celiac or gluten is I'll leave because it's obviously not a safe place to eat. That is something that makes me angry. "Yeah, we have a gluten free menu." But then they have no clue what that actually means, don't understand cc it really isn't helpful that the food begins as gluten free.

IrishHeart Veteran
IrishHeart
Posted

Between this thread and the simultaneous "Ignorant Cashier" thread and the more humorous "Things People say to Celiacs" thread--all in the COPING section--we seem to have much to be aggravated about. :lol:

I am thinking that none of you guys who get so upset about a seemingly "common sense" issue (to us) -- were never teachers? :lol:

We come from the "there are no stupid questions" view because EVEN IF THERE ARE STUPID ONES, we strive not to make the person who asked it feel stupid that he asked.(That was not always easy, I assure you. :unsure: )

Sometime is is just plain NAIVETE. I think we need to give these folks a break.

Some people are just not very bright, believe it or not.

I saw a lot of ignorance (which means "a state of being uninformed, BTW--not that someone is "stupid" or has "low intelligence"--this word is frequently misused) and it was not always the person's fault. It was sometimes in the upbringing as well as a simple lack of resources to obtain knowledge about certain subjects.

I was pretty ignorant about gluten and all the foods, etc. that wheat is IN before this happened to me. I had to learn a lot.

Not everyone is as fortunate as we are--educated, have internet access, etc.

Just sayin. :unsure:

squirmingitch Veteran
squirmingitch
Posted

Between this thread and the simultaneous "Ignorant Cashier" thread and the more humorous "Things People say to Celiacs" thread--all in the COPING section--we seem to have much to be aggravated about. :lol:

I am thinking that none of you guys who get so upset about a seemingly "common sense" issue (to us) -- were never teachers? :lol:

We come from the "there are no stupid questions" view because EVEN IF THERE ARE STUPID ONES, we strive not to make the person who asked it feel stupid that he asked.(That was not always easy, I assure you. :unsure: )

Sometime is is just plain NAIVETE. I think we need to give these folks a break.

Some people are just not very bright, believe it or not.

I saw a lot of ignorance (which means "a state of being uninformed, BTW--not that someone is "stupid" or has "low intelligence"--this word is frequently misused) and it was not always the person's fault. It was sometimes in the upbringing as well as a simple lack of resources to obtain knowledge about certain subjects.

I was pretty ignorant about gluten and all the foods, etc. that wheat is IN before this happened to me. I had to learn a lot.

Not everyone is as fortunate as we are--educated, have internet access, etc.

Just sayin. :unsure:

Well said!

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Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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