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Responses To "i Have Celiac" Or "i Have Food Allergies" ...... Gotta Vent A Little!

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After 3+ years I am pretty comfortable with Celiac and the whole taking my own food to friends or if we eat out etc.  The things that still (!!!!) set me on edge is when I nicely say "No thank you, I have Celiac and can't eat gluten" or  (because more people understand this) "No thank you I have a lot of food allergies" is when they respond with "Oh I am so sorry. How hard for you"   I want to respond with "I'm not.  I'm the healthy one"!!!   Grrrr.  Just needed to vent that.     :angry:

 

And may I vent one more thing?   We are visiting with our BFF's for a week.  My BFF declinded a dinner invitation that had been extended to all of us that she didn't want to attend using me as the excuse.   She told that hostess that because I have celiac it was too hard for me to eat at someone else's home.  That made me so mad!  Let me determine how i can or can't do my food, if I can go to someone's home or not.  Don't use me and my disease because you don't want to do something.  :o

:rolleyes:

Thank you.  I needed that.  Feeling better now

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For the first vent, I just tell them, "Hey, everybody's got something. At least for what I've got I don't need surgery, I don't need medication, heck I don't even need a doctor. Not only that but there are so many foods that are gluten-free and delicious I don't feel deprived at all."

 

As for the second vent, she should have asked you first. If she hasn't got guts enough to decline an invitation on her own she should be ashamed of herself. How well do you know the hostess? If you know her well enough to call her, call and tell her YOU'D love to come! :lol: THEN let your other friend squirm.

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Yeah, what is hard for us is people's inability to think before they talk

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What I love  :wacko:  is the pity I see in folks eyes when I explain why I have brought my own food...I often say don't pity me as long as I am sitting here with you...think of all the events I have missed for many years when I was unable to function...now I am able to be here with you having a good time...I no longer need anyone's pity. 

 

Thankfully this conversation is become less frequent now that I finally have a bit better attendance record -- I missed nearly every event after 3pm for over 5 years and many isolated evenings before that.  I am thankful for everything I can do with my food in tow :D

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I simply respond with "I can't but thank you for offering" when I am offered food. I figure if people want me to elaborate, they'll ask. A lot of people are simply being polite and need only a simple no with a "can't" rather than "won't" and they'll go their own way and it is quickly forgotten. Do I pass up an opportunity to educate someone? Sure. But I also am avoiding being looked at with that pity that makes me just want to scream. I hate the "I'm so sorry" with the look on their face like you just told them you have a terminal illness. OMG! I could just smack that look off some people's faces. A simple "I'm not sorry, I feel the best I have in years and have something to eat" followed by a deflection usually works. Ask them about themselves and they're off and running as if the conversation about celiac never happened.

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I just shrug and say "eh, not really", as though they were a little crazy to suggest it. Usually at least gives them pause. :P

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"That's a real disease?  I thought you were just saying that stuff to get attention!"  My response?  "Google it."

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When of my favorites to throw out when getting the pity look - " But look st all the calories I am saving". Works well, especially when the group is eating deep fried and breaded appetizers or big desserts :-).

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I can relate.  I don't have celiac but I do have food intolerances and that seems to be even worse in terms of people understanding.  They just plain don't.  If I say that I have allergies (some people refer to intolerances as IgG allergies), then people with IgE allergies take offense and say that no, I do not!  They also seem to think that if something won't kill you, then you should just go ahead and eat it.  Oh, I also have diabetes!  I have actually had people say that to me.  Go ahead and EAT the cookie!  It won't KILL you!  To which I reply something like...  Yes, but I already have neuropathy and gastroparesis.  Would you like me to lose my sight and my feet too?  That always takes them aback.  People who don't have to eat a special diet just don't get it.  They seem to regard it the same way that they would for a weight loss diet.  In that they think it's okay to cheat sometimes.  Nope.

 

I have also had people use me or my daughter as an excuse.  It would be too hard to feed us so the family just won't go.  Or perhaps worse still, simply don't invite us at all or tell us that we can't come because it would be too hard for us.  Just don't make decisions for us!

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It's extrememly frustrating to me that every social gathering or function has to be based around food or alcohol.

The whole act of eating or consuming food has becoming this social experiment. I need to relax while I'm eating, and adding a ton of people to it just stresses me out.

Eating out in a resataruant, worrying about poor service, bacteria from unwashed cooks hands, and just mobs of people waiting wherever you go.

And gatherings of friends or families, worrying about what to buy, who is allergic to what, or just simply wants to be difficult and doesn't like what the host(ess) is providing.

Then someone notices I'm not eating and has a flip out and takes it personally, like I'm insulting their cooking when half the time they didn't even make the food.

My typical responses:

"I ate before I came"

"I have to leave to meet someone to eat"

" I'm not hungry"

" I'm vegan, I'm allergic, I'm against whatever you are serving"

I usually don't beat around the bush or bother to explain my condition any more. The typical responses of " OMG I COULD NEVER GIVE UP BREAD!" as if I had a choice in the matter.

 

thats a vent.

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I just try to avoid the WHOLE thing....really, I had to put up with personal questions about my weight and diet for 5 years before I went gluten-free, I'm really sick and tired of the responses.....and the look of pity - OMG!

 

So, I avoid "food socialising" as much as possible and have become a hermit.....yeah, just about.

But now, you folks have something to answer for......yeah, you know who you are!  <_<  Because, I am trying to do one of the strategies y'all suggested.....invite people round to my house for food - WHAT HAVE I DONE?

 

MIL (who hates me....for many/any reasons, but especially because she quizzes me about my food, talks endlessly about her own (poor) diet and ailments, then tells my hubby not to bring me round coz she's sick of hearing what I eat!!!) is coming to dinner next week.....nooooo, what was I thinking?  :o  :o  :o  :rolleyes:

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Oh, one I forgot about that just sends me over the edge every time... "I'd just kill myself if I couldn't eat X" or better yet "if I were you I probably would have just killed myself when they told me." I don't even hold back any more. Don't stand there and tell me that my life is so devoid of meaning that I should off myself because I can't eat the same things you can eat. I throw it right back in their face and when I do now they get this look like I just hit them with a cold, dead fish. "So what you're basically saying to me is that based on what I can and can't eat my life is so pathetic and meaningless that I should probably just go kill myself?" Since that is effectively what they said, they can't back out of it, and it generally evokes a response of stunned silence or incoherent blubbering. People really should think before speaking instead of just having diarrhea of the mouth.

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I just try to avoid the WHOLE thing....really, I had to put up with personal questions about my weight and diet for 5 years before I went gluten-free, I'm really sick and tired of the responses.....and the look of pity - OMG!

 

So, I avoid "food socialising" as much as possible and have become a hermit.....yeah, just about.

But now, you folks have something to answer for......yeah, you know who you are!  <_<  Because, I am trying to do one of the strategies y'all suggested.....invite people round to my house for food - WHAT HAVE I DONE?

 

MIL (who hates me....for many/any reasons, but especially because she quizzes me about my food, talks endlessly about her own (poor) diet and ailments, then tells my hubby not to bring me round coz she's sick of hearing what I eat!!!) is coming to dinner next week.....nooooo, what was I thinking?  :o  :o  :o  :rolleyes:

 

Hang in there....the best thing we ever did was invite the irritating family members over...first meal "Is this/Is that gluten-free" until I was ready to hit something.  Subsequent meals "I can't believe this is gluten-free"....eventually it became "This item, meal or dessert is delicious" sometimes followed by "Thank You" -- be still my heart. 

 

Can't say it was easy really, but can say it was well worth the effort....once we got used to having family and friends over it made it easier for me to meet them at a restaurant or show up to their home with our own food.

 

Keep the first meals simple if you can....will make it less stressful and start or finish the meal with something yummy -- sinful chocolate cake or super rich brownies and coffee always worked for me :)

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Keep the first meals simple if you can....will make it less stressful and start or finish the meal with something yummy -- sinful chocolate cake or super rich brownies and coffee always worked for me :)

Since there's no special occasion, I thought I'd keep it simple/easy too. I thought roast chicken, roast potatoes (sweet potatoes for me) and veg.......but oh no, I never even thought about dessert! 

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Since there's no special occasion, I thought I'd keep it simple/easy too. I thought roast chicken, roast potatoes (sweet potatoes for me) and veg.......but oh no, I never even thought about dessert!

The dinner sounds perfect!

Don't worry about dessert...but I found it nice to sit and have coffee while folks enjoyed something sweet....if interested...a really easy thing is Betty Crocker gluten-free brownies .... I add a cup of chocolate chips to the batter and sprinkle small squares with powdered sugar....easy.

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Or ice cream.

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The dinner sounds perfect!

Don't worry about dessert...but I found it nice to sit and have coffee while folks enjoyed something sweet....if interested...a really easy thing is Betty Crocker gluten-free brownies .... I add a cup of chocolate chips to the batter and sprinkle small squares with powdered sugar....easy.

Thanks for the suggestion, while that does sound delish, I'm in the UK and I've never found any Betty crocker gluten-free mixes here, only the gluteny ones and I still have a long list of intolerances which would rule me out.....I wanted to make the point that we could all eat the same meal, with "normal" food (i.e. not speciality gluten-free). I usually cook EVERYTHING from scratch anyway....so after your input, I've decided it will be a thing I make with dessicated coconut, egg and golden syrup....they are kinda like macaroons.

So glad we had this chat! 

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Completely understand....when we began entertaining post gluten-free...I was able to enjoy the desserts I made with my guests....eventually I was unable to...but still enjoy making sweet treats - especially for my sons.

Enjoy your dinner party :)

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Or ice cream.

Ooooo, ice cream.

Nope!

I can't do dairy (or maybe I should, MIL would never come back! Lol), and I refuse to sit and watch everyone else eat it. 

Got it sorted now though....it's the coconut thingys I mentioned to Lisa - done, sorted.

We can all eat the same - no pitying looks for me!

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I love baking for guests! The most recent time I had guests over I made lavender cupcakes. They oohed and aahed over them and devoured them. Other than that, I usually just do whatever would be a normal Sunday dinner which is meat, veggies and gravy. People are so busy being astounded that someone knows how to make gravy that isn't from a packet or jar they never notice that there isn't bread. :lol:

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(this seemed like a good place to put my:)

 

rant  :angry:

 

every year, i travel 750 miles to my hometown to see my family and friends.  when i first moved away, i made the 'rounds' - i spent a full day traveling up there, 6 days driving around to everybody's house to visit them, a full day driving back.  that's alot of driving, right.  also, so many people had schedule conflicts and i couldn't be in 2 places at once, so inevitably i would miss visiting someone.  my bad.   <_<   so, a few years ago, i made a New Rule - when i got there, i was staying put.  if you want to see me, i'll be (at my sister's or my bestie's) here so come on and visit me.  the numbers DWINDLED  :o   at first, i was a little disappointed, then i was like, well, good thing i'm not running my a$$ off chasing after people who can't be bothered to drive 15-20 minutes to see me!  no big.  except my father's wife - every year for the past 3 years running, there is something 'wrong' with her.  she has trouble with her (foot is a biggie) something and can't come to see me.  this year, my dad calls and says "hey, want to go out to dinner?" i said, really dad - where would you like to go eat - i probably can't eat there.  i said why don't you guys come to my friend's house for dinner (the hubs and i cook) so he comes by himself!  he says "she has trouble with her foot"  REALLY?!  because she was all froggy jumping up to go out to dinner at a restaurant!!  he says, well, she would really like it if you drove down to the house to visit her.  you know:  because of her foot........

 

i told him:  ya know what?  basically, everywhere i go, anything i do, i have to bring my own food.  EVERYWHERE.  ALL THE TIME.  and i manage to do that.  i have been all over the country, gone to shows, races, visiting my kids, and managed to make the effort and did it.  ALL THE TIME!  FOR EVER AND EVER!  and once a year, somebody has to do something that is convenient and comfortable for me..................

 

ugh!  sorry - i don't even know what my point is.  i am usually laid back and pretty even tempered - most things amuse me.  just... AUGHHHH!!!

 

rant over  :(

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 People are so busy being astounded that someone knows how to make gravy that isn't from a packet or jar they never notice that there isn't bread. :lol:

lolz - not my mil !  i forgot the bread (an afterthought for me anymore) ONE TIME and now she brings her own and jams it in my face.  (yayyy)

 

greebo - i hope your dinner turns out great - you are making me hungry :)

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lolz - not my mil !  i forgot the bread (an afterthought for me anymore) ONE TIME and now she brings her own and jams it in my face.  (yayyy)

 

greebo - i hope your dinner turns out great - you are making me hungry :)

 

I solve the no bread problem now by just making Brazilian cheese bread. No one even suspects that its gluten free until I start stuffing it in my face too. Heck, it wasn't anything that ever crossed my mind all the times I was eating it at restaurants.

 

Sounds like your father's wife was only interested in dinner out, not in seeing you. You were just a possible means to an end. Would like if if you went to see her? For serious? Relationships are a two way street, and in general people are supposed to meet somewhere in the middle. Not sure why she thinks that since you already made all this other effort you should make the rest too. <_< I'd totally get off my butt to see you for an evening, you're a riot a minute.

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You guys sound like you escaped from the What's for Dinner thread!  Did one of you dig under the fence again?  :D

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addy!  RUN!  she's onto us!!   :lol:

 

and i AM fun........  just ask me......   :ph34r:

 

yah, my skin is usually thicker, but it's so obvious.  pretty sure she suggested the restaurant so i would say no   -_-   o, well....

 

you're gonna hafta open the gate, karen, i'm not digging back under that fence.  i think i broke a nail....   :P   the horror   :P

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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    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.
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    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023