52 replies to this topic

[LePandaRouge]

How do you deal with family members and friends who don't take you seriously?

I discovered I have celiac disease and went gluten free 6 months ago. The problem is I've been living abroad for several years so my family has not witnessed my symptoms. All these years I hid from them that I suffered from fibromyalgia and chronic fatigue as well as constant GI symptoms and mental health issues, etc...

And so I'm visiting them this summer and they seem to think going gluten free has only been a diet choice, nothing dangerous. I tried telling them about the symptoms I was getting. Also, my mother has suffered the same symptoms all her life and suffers from cerebellar ataxia and has had difficulty walking for a few years as a result of gluten. I tried explaining this to them and that if I carried on eating gluten, I'd end up like this too. But it's like their face goes blank and they stop listening at this point.

So I feel like I constantly have to defend myself. They especially don't understand why I'm being careful with cross contamination and get annoyed each time I say I can't eat something.

For example, I was making gluten free pasta at my aunt's house the other day and she wanted me to use her colander. I said I'd rather not as they use it for wheat pasta all the time. But she was arguing that it's fine and that it's washed very well. I still said no, but she wouldn't let go.

Or another example of annoying conversations we have is:

Aunt: "can you eat doughnuts?"
Me: "No, unless they are gluten free"
Aunt: "I have some doughnuts in the fridge, can you eat those?"
Me: "Most likely not as doughnuts are generally made from wheat flour unless you took them in the gluten free section, but no one buys baked goods in the gluten free section unless they're looking for gluten free specifically"
Aunt: "You never know, maybe I grabbed gluten free doughnuts without realising, let's have a look"
- So Aunt gets up, walks to the fridge and brings me the doughnuts -
Me: "No seriously, they will be made of wheat. You don't go to gluten free bakeries or shop in the gluten free section unless you are gluten free. It's not something you just stumble on accidently. There are not enough gluten free products on the market for that to happen, unfortunately."
Aunt: "You don't know that. You don't know until you read the ingredients."
- Aunt hands me the doughnuts -
Aunt: "Go on, check the ingredients"
Me: "Fine"
Me: "First ingredient - wheat flour"
Aunt: "ah"
Aunt: "But I have biscuits too, can you eat those?"
Me: "No, biscuits are made of gluten too"
Aunt: "But maybe these are made with gluten free flour"
Me: "No, as I said, baked goods on the market are very rarely gluten free"
Aunt: "Why don't you just look at the ingredients before dismissing them?"
Me: "Because I know they contain gluten! These things are made with wheat flour!"
- Aunt gets up and gets the biscuits and makes me read the ingredients -
Me: "Made with WHEAT FLOUR"
Aunt: "Ah, well what about these other biscuits?"
Me: "As I said, baked goods are generally a no..."

*Sighs*

And so on.... And it gets tiring for me... and them...

And the problem is, they raise the gluten issue in every conversation. And when I respond they always seem tired and bored of me talking about gluten. Well then why don't they just let me eat what I want and stop questing and interfering.

Is anyone in the same situation? How do you deal with that?

(rant over)

[Kay DH]

It gets frustrating. It is why sometimes the best family is people you aren't related to. It takes a long time to adjust to being gluten-free. I started last fall after symptoms kicked in following the flu. It has taken me some time to adjust and for gluten-free to be automatic. Yes, I sometimes have issues with friends. I took almost all my own food while camping with friends last week. With any of their gluten-free food I made sure I was "first in line." Even with that my "brother" asked if I wanted a second helping of the (gluten-free) BBQ, and I said, "no, there is always the risk of cc." He said there was no cc, and we went back and forth until I said someone was eating the non-gluten-free potato chip crumbs and they could have... There are so many sitcoms. seems like Celiac would be a good one. It is important to be anal retentive when it comes to gluten. Even 6 months later my friends ask if coconuts are gluten-free, etc. But they are learning, and more importantly, they sometimes make gluten-free allowances just for me. A friend made me a gluten-free birthday cake last night and kept all the ingredients for me to look at first. With all the frustrations, I find it best to step back and remember all of the things to be grateful for, the friends that invite me to gatherings and accept that I will bring my own food, the acceptance of my limitations, and that chocolate is gluten-free. Your family has lack of knowledge about gluten intolerance and where the nasty molecule lurks, but they also may be in denial and this can take a long time to dissipate. Could there also be a bit of "yanking your chain" to get a reaction from you?

[Skylark]

I don't have much help as far as dealing with family. We all have allergies and are used to reading labels and whatnot.

The thing that struck me about your story is that your mother needs celiac tests. You know celiac can cause cerebellar ataxia, right? If it's at all possible you need to drag your mother to the doctor and get her tested for anti-gliadin IgA. She may not come up positive on the other tests because they're for gut damage.

Good luck staying healthy during your visit and I'm sorry you're having to go through this.

[cassP]

yes! you need to drag your mother to get tested.... im "THIS CLOSE" to dragging my dad in ..
i COMPLETELy understand- in addition to family- its everybody else too.... looking at u like you're looney- oh i totally am there with ya

[Kay DH]

Good point regarding the ataxia. If your mother hasn't been tested for Celiac then it is important to do so. There are a great many symptoms that can be associated with gluten intolerance, and finding a doctor familiar with Celiac (not an easy task) can help to sort all of these out. I have a niece with lots of GI problems that is gluten-free, but she won't have the Celiac tests because of the real fear that she won't be able to get insurance for a preexisting condition if it comes out positive . I have a sister with lots of GI issues as well, but her's aren't severe or obvious, and she won't go gluten-free or get tested. I sent her a lot of gluten-free pastas for her birthday and she said she would save them for when I or her daughter visit. Family. Celiac just offers one more layer of frustration.

[shellyinskiatook]

That is soooo annoying. I've started saying something like...I will never be able to eat anything that you cook for me, ever. I will take care of my food, so please don't offer me any. I do not like to call attention to myself so please don't ask me about it.

I've had food issues my entire life. There are always going to be people who don't believe you and that's unfortunate. I've had very close friends accuse me of "making up my food allergies to get attention." Really? Yeah, everybody wants this kind of attention, right? I'm no longer friends with those people.

I've been allergic to citrus since I was a child. My sister sent me a box of grapefruit for Christmas a few years ago. I mean, what the hell? I had to get my neighbor to get the box off of my porch. I've discovered that some people will never get it because they really don't want to. Stay strong and just SAY NO!! *even if they don't want to hear it

[aLayla]

I found it was educating to go with my Mom through Wikipedia articles together (both for ADD or celiac or whatever..) And translate stuff or show her pictures of vilii and explain briefly.. so she understands the mechanisms and the symptoms..

I was gluten-free before and it kinda drove them crazy (even if I cooked my own food, just leaving the extra dishes around was 'soo annoying' ugh)

Celiac has been in the papers in the last few years too, and some acquainatnces have been officially diagnosed, so that helps too..
If there were no articles in your country, consider translating some stuff, especially signs/consequences etc. Some really good tips on this forum too

Also, remember old people can have trouble remembering stuff.. They just want you to have a good time.. Sometimes they can't eat cookies due to health reasons and want you to 'enjoy' for them!! (They may also equate cookies=love! )
Educating, inspiration, or just changing the topic can help?

I've sometimes said that I have a 'pre-diabetic' condition too, my blood sugar can go haywire after sweets and I try to stay away.. They know about diabetes (though some of the diabetic relatives still eat and bake cookies and such!!) at least it helps them relate more easily...

[DownWithGluten]

It is extremely frustrating. I don't have it nearly as bad as you (OP)...but yet even the occasional callous comment like "Well I'd assume someone on your diet would know what you could or could not eat" (at a fair)...when of course it's like...not unless I see the ingredients of EVERY food, and even THEN there could be contamination, hidden gluten, etc ad infinitum. It's not like I'm doing it to be paranoid or finicky. I'm doing it because every thing I eat has a potential bomb lodged inside it that will go off in my instestines if ingested. So, heck yeah I'm careful and always air on the side of caution. I'm sure there ARE things I could eat that are gluten free, but unless I KNOW, or it is labelled gluten-free, or I have checked the brand, or it's just a plain carrot...etc...I'm not gonna eat it. sorry. but people do seem to get annoyed occasionally, like the fact I'm not eating gluten is an inconvenience to THEM so how...even when it does not affect what they eat at all. It's like...why does it matter, then? Just let me be lol. I'm not complaining and don't stand around whining about what I can't eat to everyone all the time...so just leave me alone and believe me when I say I don't want to eat something because it might make me sick.

So kudos to you for having way more patience than I would with your aunt.

[GlutenFreeManna]

Since you posted this a few months ago, I'm just curious, did it get any better? That's a very strange conversation with your aunt. My thoughts were either she is illiterate and unable to read the ingredients herself or she is just trying to annoy you. Some people that think this disease is fake will go to great lengths to tempt you to eat gluten. Then again I have heard of people thinking white bread is made of rice so I would not be completely surprised if she is just that ignorant of what is in her food. If they are not being annoying on purpose I would try to educate them. It sounds like your mom needs testing. I hope you can convince her someday to get it before she is completely diasbaled by the gluten ataxia.

[coffeetime]

I think sometimes that if a reaction to gluten was similar to peanuts and the need for epi-pens (I know it's NOT an allergy but an autoimmune response) people would take it more seriously. When I read the conversation with the aunt I immediately thought of my dad who at 85 is always offering me food (often gluten laden), I think it stems more from lack of knowledge and understanding about how many products have gluten--think how hard it is for us just navigating the grocery store. Food is equivalent to love for many people and I would bet for your aunt it may be the same. I find in these situations, it's easier to say thank you but I'm so full from lunch, breakfast, etc and remember she loves you. We have to find a way to live safely in the food world around us, if we are lucky enough to have family members who are knowledgeable and willing to accommodate that is wonderful, but I don't think we should ever assume that family and friends are out to trip us up.

[K-Dawg]

I have also had that sort of conversation....I remember my dad getting into it with me and saying something like "the label says MAY contain gluten, not that the product DOES contain gluten" and he was suggesting that I should give it a go! lol. I finally said, "Dad, I'll pass. I'm happy with my lettuce wraps right now"

In the end I appreciate that he just doesn't get it. I mean, there is some sort of huge block for him. He is a smart guy, but this 'gluten free thing' just doesn't jive with him for whatever reason. No big deal. I simply REFUSE to engage in any conversation with him on it. If I am at his house, I bring my own food, cutlery, dishware, microwavable container, etc and if he asks "would you like this or that...do you think it contains gluten" i don't even bother trying to educate him. I just say "no thanks, Dad. I'm good"

At the end of the day, he is not going to ever appreciate the nature of celiac disease and that is okay. I know he loves me and now that I've given up trying to educate him, there's no more of those idiotic stress-filled conversations. phew.

KDawg

[Cypressmyst]

Hahahaha! Replace "Aunt" with "Mom" and you just glimpsed my life.

Thank you, my husband and I laughed out loud reading that. Very "Whos on First."

I am currently dealing with this as well. And I'm pissed because I've averaged 8 hours a day worth of in depth research into Gluten for the past 6 months. I think at this point I know a little something about the issue. So when people act like idiots it is very hard not to take it as disrespectful of my intelligence...as if I don't know what I'm doing.



I have no advice as I keep on trying to educate whenever possible and completely against the odds (But this is too important not to!).

Anyway, know that you made two people smile today and you do have support here on the forum.

[cap6]

my Dad is sort of like your aunt. "So, you can't eat that then Sis". "No Dad". "well let's look at this." I can't get upset cause he really cares but at 82 he just doesn't get it. When we visit I take my cooler, scrub a spot in his refrig, take my own pan and cutting board, a sense of humor and love and... pray! He means well and cares and he always takes me out to eat at Outback cause he knows I can eat there!

[revenant]

Ohh yes it's hard... Right there with you.
My mom keeps threatening to send me to an "eating disorder clinic". She takes me to the emergency room and tries to persuade the doctors that I have an eating disorder because I do not eat gluten and lactose. Because I'm self diagnosed and too late for testing... they seem to be on her side.

Quite a hard place to be put for us! But we'll grow from it. All that matters is that you are feeling well

[mushroom]

Ohh yes it's hard... Right there with you.
My mom ...... takes me to the emergency room and tries to persuade the doctors that I have an eating disorder because I do not eat gluten and lactose.

What you need to tell the doctors is if you ate gluten and lactose you would really have an eating disorder - called untreated celiac disease.