People Not Taking You Seriously
Posted 14 August 2010 - 06:07 AM
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: "First ingredient - wheat flour"
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..."
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?
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Posted 14 August 2010 - 09:05 AM
Posted 14 August 2010 - 09:19 AM
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.
Posted 14 August 2010 - 09:24 AM
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
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(
Posted 14 August 2010 - 09:29 AM
Posted 21 October 2010 - 03:11 PM
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
DH 1985, Migraines 1990, ADHD 2004, Celiac 2010, Citric acid free since forever and dairy free since celiac diagnosis
Posted 02 November 2010 - 06:07 PM
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...
Posted 03 November 2010 - 02:49 PM
So kudos to you for having way more patience than I would with your aunt.
Posted 03 November 2010 - 03:26 PM
Posted 06 November 2010 - 03:25 AM
Posted 08 November 2010 - 12:32 PM
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.
Severely anemic in 2007 (undetectable iron levels)
Elevated liver enzymes (ALT and AST) as of October 2008.
Negative blood test for celiac disease in February 2009, followed by diagnosis of celiac disease in April 2009 after positive biopsy.
Posted 23 November 2010 - 01:26 AM
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.
Refined Sugar Free
Freedom's just another word for nothin' left to lose...
...dang...there goes chocolate... :bawl:
Posted 24 November 2010 - 09:15 PM
Posted 27 November 2010 - 10:26 PM
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
Posted 27 November 2010 - 11:13 PM
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.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
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