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When Someone Asks, "how Can I Get That [Celiac]?"

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35 replies to this topic


Marilyn R

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Posted 02 May 2012 - 07:42 PM

What do you say to comments like that? Once someone said that I have good will power. I replied, "No, I have a constant reminder of the painful consequences of going off the diet. It's not like I feel satisfied from eating...[gluten]...almost immediately I feel sick to my stomach...." That seemed to be a good reply.

I can Sooooo relate to your post. I used to weigh 185 lbs and now weight 138, but the dr's offices take off two lbs.to account for clothing.

I don't know who is saying the unkind things about your weight, but it was somebody at work for me. I finally told somebody who loves to tell everybody who said what that I was really fed up with the "skinny" comments. I told her nobody commented when I was busting out of my size 14s, but now that I was down to a size 4, everybody felt that they could say anything. The comments stopped immediately.

If it's somebody in your family, have a heart-to-heart (this is awful, but, it helps...) "don't tell anybody" conversation with a sibling, cousin or aunt who always reports the family news. I swear it works like Raid on bugs. The only time I get somebody ragging me about my weight now is when I go to my GI. (I'm 6' tall, so a size four doesn't look particulary good on my frame. It is what it is though, and we're making it despite the stupid things people say.

I have a friend who is an identical twin. She said she and her sister came up with 1,000 answers to questions about being twins. People just ask stupid questions or say stupid things about those of us who are different, and don't understand that the comments they make don't help. They're pretty much clueless. My sister says they're jealous, they don't get it, because I'm skinny. (She doesn't get it either.) B)
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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Posted 02 May 2012 - 09:03 PM

I was always normal weight as a kid, and even as a teenager. I lost weight (20 lbs) when I was 15, but that was totally intentional. At the time, i did the South Beach Diet, which is pretty much a gluten-free diet in the first stages, which is where I lost most of the weight. I kept it off because I started swimming 5x a week, after I added bread/wheat again, but I started getting sick. I never went to "walking skeleton" stage, thankfully.
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Posted 03 May 2012 - 07:57 AM

Take some Biotin for the floppy girls. ;)
My girls seemed to think after feeding two kids they were headed south for retirement. Started taking Biotin for hair/ nail growth and they perked back up. :D :D

:) thanx ! i will take all the help i can get :D

since i have been recovering, i have started a "mini" (and i do mean MINI) itty bitty (i don't even think you could call it a workout..) set of exercises just to improve my muscle tone. it is working surprisingly well. i start with 'boob ups' - take a scrunchy or anything elastic and hold it in both hands out in front of you with elbows level with your shoulders. then i just stretch and hold for 10 10 second reps. you will know you're doing it right when you feel the muscles under your boobs tightening up. i have noticed perkiness improvement :) <husband too lolz ;)

as i have been re-gaining healthy weight, it needs to be managed! i never had to do this when i was younger. doing sit-ups on the bed holding my legs straight out and trying to hold with abdominal muscles. i didn't think it was doing me any good until i stopped doing them. i do as many as i can of those. and i do leg lifts (10 per side) - now - i know some of us are easily fatigued and even this will be tiring to some. but if it helps to tone a little and makes some happy endorphins, that works for me. it takes like 5 minutes and if i skip a day, i feel 'floppy' my 28 year old daughter can't do the sit-ups hahahaaa so it is definitely making a difference and they are getting easier.

i still smoke cigarettes and i am hoping to quit and replace them with exercise endorphins..... just........ not today...... :)

IH, you might not be up to this yet - i am 21 months into recovery since dx.

oh, and for all the people who love to comment on how wonderful it is that i can stay so skinny: i had an upper respiratory infection last week and lost 4 lbs in 5 days. i posted it on my fb and everybody was "horrified" - WAY TO PAY ATTENTION, FRIENDS AND FAMILY.... your concern is a little late ;)
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misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010


only YOU can prevent forest fires - smokey t. bear


have a nice day :)

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Posted 03 May 2012 - 10:04 AM

I'm one of those that Irish mentioned. Oh, I would like to gain a few pounds but if it doesn't happen --- cest la vie! Other people have always had more problems with my weight (or lack of) than I. I am happy with my hair including the color --- well the grey coming in is getting a little weary. I've always liked my nose. I'm happy with my legs -- even though they're short --- they are a great shape. I like my eyes & my chin. And even though some things are changing with aging, such as my disappearing cheekbones; that's aging pure & simple. I live in my own skin & I'm content. I'm darned lucky!!!!!! I am who I am & what's inside me is far more important than what the outside looks like. I'm getting wrinkled & varicose veins & when you look at me you can read the story of my life. I have dh & I wear shots & short sleeves & I have scars. Another chapter in the story of my life.
I look at other people & I look into their eyes; into their faces as we speak. I honestly couldn't tell you what they were wearing b/c I'm not examining them for flaws or for comparison purposes. I'm looking inside them where what they are wearing inside their body is the important part.

And after all these years & all this living I still am shocked to the core when people put so much emphasis on what the outside of people look like.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.




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Posted 03 May 2012 - 12:46 PM

i still smoke cigarettes and i am hoping to quit and replace them with exercise endorphins..... just........ not today...... :)

IH, you might not be up to this yet - i am 21 months into recovery since dx.

Your story is encouraging :) Good for you!
You can do anything! (even quit smoking) ;)

and yes, thanks, I am slowly getting there, too. I can walk 20 minutes without gasping for breath and I do 10 bicep curls & 10 tricep curls with 2 lbs. weights. Not bad for a girl who could not open a jar or use a wire whisk for a while there!
Stay strong and happy ta-tas lifting.

I'm going to do those too. :lol:
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014


Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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Posted 03 May 2012 - 02:44 PM

I'm 43, have 4 kids, and wear a size 2 (0 at Gap). Lost about 15 pounds after going gluten free and figuring out my multiple food intolerances. I'd love to add a few pounds, but I honestly struggle to keep my weight where it is. Sometimes I wish I could post on FB "So excited! Gained a pound back! Only took a week this time instead of 2!" or "So frustrated. Took a trip and lost 2 pounds" but I know that wouldn't be well received...

When I tell people I have to work hard to maintain my weight, I hear "That must be a good problem to have!" I am SO tired of hearing this! If it's someone I think I'll end up friending, I tell them more. Then I tell them how bad I feel when I drop under a certain weight and how it isn't fun to have to force eat more corn pasta with olive oil or potatoes (no dairy) or peanut butter. I tell them what I can't eat and how hard it is to eat out. After all that I usually hear "Wow! That must be hard."

One friend I hadn't seen in 20 years asked how I stayed so slim at the beginning of our conversation. I said "autoimmune disease." LOL! Not sure i'd do that with a stranger.

Can you eat HONEY?...If you can...google "health benifits of honey"...wonderful antioxident...great for healing the intestinal track...and its FATTENING! LOL!
Dates have great HEALING properties as well! AND will help you gain!...google dates!
They TASTE great as well! there is so many ways to put honey and /or dates into your food...or just srtait!
mix'em with stuff!yummy way to get healthy...AND gain a little cusion! :P
(and personally...at this point I WOULD make the AUTOIMUNE disease comment to a stranger...it would serve them right for saying something! Thats just rude of them...how would they like it!LOL! :blink: :rolleyes: :D

1)chopped dates and honey in your veggtable stirfry
2)chopped dates in your salad (fruit or regular veggie type salad)
Chopp your raw chicken up and cook it in a pan with chopped dates(maybe some mushrooms, a little garlic or some onion....celantro...Whatever sounds good,have fun with it) and a little honey...

I use it when I cook as flavoing....for my veggies,stirfry,meat :P (insted of bbq sauce or OTHER sauses that I can't have now!)
I use it on my chicken with a little Trader Joes parmesian(gluten-free) in the broiler after I'm done cooking it fora carmelized bbq effect!REAL YUMMY...and ITS HEALTHY!
I even carmelize apples dates and bannanas(bananas and dates atthe last minute) with cinnimon and HONEY...when my tummy hurts and I can't eat anything ELSE! :unsure: :blink: :lol:
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Diagnosed 8/3/11
Celiacs/casein sensitive/lactose intolerent

Favorite quotes-
"I know you think you understand what you thought I said,
But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...
you have to throw him in" -(21 yr.old son)

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