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veryami1

Dealing With People Who Don't Understand

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I love this! " upset the balance"!

Yeah, I also find that if I point to my abdominal area and make a very concerned yet quizzical face that most people don't want to talk about gastro stuff and the subject is dropped. The poop factor makes it real!

 

Don't you wish these people could live in our bathroom world for, oh, say, just one long night and then have to force themselves to function with no energy and a foggy brain for days? Just once would do 'em! 

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So, did your friend reply back about you bringing your own food? 

 

No response! but I decided I don't care, I'll bring my own food and if she has a problem, I can leave.  I realized that I was anticipating the fight more than worrying about her actual response - and I can't stress out over it anymore.  I'll find out next week how it goes - it's a delayed passover dinner. Part of me wants a fight anyways because I'm pretty done with this friendship. Wouldn't mind the proverbial nail in the coffin - so long as the nail isn't gluten and the coffin isn't me!  haha!  Thanks for all the responses. You guys are the best.

 

Ami

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It's like a non-Celiac person voluntarily eating a flu bug.

EXACTLY! I'm going to commit this one to memory :D

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No response! but I decided I don't care, I'll bring my own food and if she has a problem, I can leave.  I realized that I was anticipating the fight more than worrying about her actual response - and I can't stress out over it anymore.  I'll find out next week how it goes - it's a delayed passover dinner. Part of me wants a fight anyways because I'm pretty done with this friendship. Wouldn't mind the proverbial nail in the coffin - so long as the nail isn't gluten and the coffin isn't me!  haha!  Thanks for all the responses. You guys are the best.

 

Ami

 

Good for you!  You cannot go through life worrying about what others will do or say or think.  Especially when it's your health and ultimately your life that is on the line!

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Can you update? How did it go?

 

Hi, no update yet!  The dinner is a few nights away. I will say that she texted to tell me she's making a gluten free dessert and she'll have recipes on hand for me to peruse the night of. So maybe I overreacted, and it'll be okay after all....

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I wouldn't risk eating food at someone else's house.  Even if the ingredients in the dessert are gluten-free, the risk of cross contamination is high.  Especially if she's making a gluten-free baked good.  Or cutting fruit up on her bread cutting board. Or "Oh, that spoon isn't that dirty. I'll reuse it mixing up this other dish."  Each exposure to gluten can potentially lead to more health problems down the line.  Your immune system will flare up for weeks if not months. Not worth the risk.  Many people think that if you get glutened, the only effect is a bad stomach for a few days, and they just don't understand it's far, far more than that.  I would just tell her that you thought about it and researched more and decided it's not worth the risk.

 

I personally bring my own food.  I don't ask.  I tell friends and family ahead of time that I can't eat what they're preparing, and I'll bring my own.  I'm very polite about it, though. :)  For instance, at Christmas, I had a family member (who I don't see often) set aside some pork chops and not put gravy on them for me.  (I didn't know they were going to do that.) I smiled really big and thanked him for thinking of me, but I told him that since I'm effected neurologically, I can't afford to take chances. Even a crumb, etc., etc.

 

Oh, an example of the risk of eating in a mixed kitchen.  After my diagnosis, I had someone help me to get rid of all the gluten that was left in my kitchen.  I had been gluten-free 10 weeks at that time.  I didn't touch the flour bags or wipe down those shelves, but I was in the room. And I washed my hands a lot.  Somehow I got mildly glutened.  I think the flour poofed, and it drifted onto my lips or maybe onto something I used to prepare food later.  I don't know.  But if your host is making your food right after using flour, your food could be at risk.

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Hi, no update yet!  The dinner is a few nights away. I will say that she texted to tell me she's making a gluten free dessert and she'll have recipes on hand for me to peruse the night of. So maybe I overreacted, and it'll be okay after all....

So far, I've only accepted gluten-free food from someone with Celiac. It is difficult to turn down food someone has gone our of their way to make gluten-free. I was sick for so long, my social life vanished and so these incidences happen infrequently and give me a chance to reflect before the next one. My husband's family lets me fend for myself and they don't make a fuss around me for which I'm thankful. They are supportive probably because they work with people who have challenges (& they, especially MIL, are experiencing me without gluten HA). As life kicks back up, I plan on taking my own homemade dish to share and to be the hostess with the mostest in my safe home bubble :). Everything in its time.

I really hope this dinner party goes well for you and that you enjoy the company above all else!

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I thought I'd let you guys know the dinner went great! It was last night. I don't feel like I've been glutened, and I'm hoping it stays that way. She had lots of gluten-free options, including a cucumber salad, delicious oven roasted veggies, and a rosemary chicken.  I obstained from eating the soup, and I brought my own crackers.  She also prepared gluten-free chocolate cupcakes for me.  I think I completely overreacted with anxiety before the dinner and I'm embarrassed I did.  I just cross my fingers I don't get sick - only time will tell on that one!

 

On other news, I went to Starbucks and was shocked that none of their employees knew what drinks were gluten-free or not. So I posted to the facebook page that they should probably educate their staff.  Boy are people dumb. I didn't say they should cater to me, just that their staff should know if there's gluten in their items. People jumped at me.

These were my two favorite comments: 

1.  In all due respect, why should a company train hundreds of thousands of employees for every dietary need out there? I can only consume a specific type of milk, I dont get angry when a store doesn't carry it because the world doesnt revolve around me (or other people that can only drink this milk).

2. They're not doctors or nutritionists. It's on you to know what you can and cannot consume.

 

I replied to both.  I think that a food establishment should absolutely know their ingredients! 

 

In another facebook post, a friend of mine wrote about eating something gluten free.  Someone I didn't know wrote:  "Oh god. F$%ing unnecessary gluten free food." 

 

It took everything in my power not to respond to that one. 

 

 

~Ami

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  "Oh god. F$%ing unnecessary gluten free food."

 

 

They probably have anger issues from eating too much gluten.  ;)

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They probably have anger issues from eating too much gluten.  ;)

LOL!!!  :)

 

I'm not sure why people get so bent out of shape over what other people eat. I mean, I'm vegetarian (which actually is not a medically necessary choice in most cases) for religious reasons, and people don't usually insult that. I'm not sure why people don't grasp the idea that what other people eat is up to them. 

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It's all a matter of context peeps and really nothing to be concerned about.

 

If I tell a friend I can't have gluten because I have Celiac, their like why, what's it like, are you hungry?  When I'm done with my speil they are a bit more educated.

 

If I tell a friend I can't have sugar because I have Cancer, their like OH, end of conversation.  No one wants to know about the bad stuff. 

 

I am of with educating the world on Celiac Disease.  It's important.

 

Colleen

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I thought I'd let you guys know the dinner went great! It was last night. I don't feel like I've been glutened, and I'm hoping it stays that way. She had lots of gluten-free options, including a cucumber salad, delicious oven roasted veggies, and a rosemary chicken.  I obstained from eating the soup, and I brought my own crackers.  She also prepared gluten-free chocolate cupcakes for me.  I think I completely overreacted with anxiety before the dinner and I'm embarrassed I did.  I just cross my fingers I don't get sick - only time will tell on that one! 

 

Based on her initial reaction and comments, I don't think you overreacted at all.  I think she did and maybe she was embarassed and changed her menu to compensate? 

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I'm not sure why people get so bent out of shape over what other people eat.  I'm not sure why people don't grasp the idea that what other people eat is up to them. 

 

So true. 

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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