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What's The Best And Worst About Being Super-Sensitive?


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#1 T.H.

 
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Posted 19 December 2011 - 07:17 PM

Sharing time again! :D

Since you've figured out that you're a super-sensitive celiac, what are some of the best and the worst things about living with this issue?


As an example, for me, one of the best things has been that now that I have to pay so much attention to my food, I eat much healthier than I used to (former fast foodie of doom, LOL). The results are good with regards to my own health, but I'm really noticing the effects on my kids. They have such versatile tastes in food compared to how I was as a kid, and they are much, much healthier in their eating habits. It's been really great to see that.

One of the worst, at least for me, is the time factor. I wish I enjoyed cooking more, but I really don't, so spending so much time on cooking food from scratch honestly feels like I'm wasting my time on something I don't like, when I wish I was doing something else. <_<

How about ya'll? What's the good and bad in your lives when it comes to super-sensitivity?
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


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#2 dilettantesteph

 
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Posted 20 December 2011 - 03:44 AM

I have to agree with you. The time factor is tough, but eating more healthy is great. As for the kids, they don't even have fast food and sugar cravings since they never really got all that used to it. How many teenagers actually like broccoli?

I could live quite easily with all that. The biggest problem is other peoples gluten and how hard it can be to avoid it.
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#3 Korwyn

 
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Posted 20 December 2011 - 04:58 AM

This is interesting question! (+1) I never thought about an upside to being super sensitive. I like these kinds of challenges to my thinking habits. :)

So...one positive thing that I can think of is that I don't seem to agonize as much as some people do over "can/should I risk trying this or not?". It is produced in a shared facility or shared house (gluten-free with non-gluten-free family living/eating there) I don't eat it. If I have a question about it, I generally just don't eat it. So really the only time I worry much about it is if I'm eating out.

I don't each much processed food at all, but one down side is actually the flip side of the above. When I do want processed foods (crackers, cereal, snacks, etc.), a lot of the resources others can eat from (Trader Joe's, Whole Foods) aren't accessible to me. So I have a much more limited availability of commercially prepared and packaged 'snack foods'.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#4 IrishHeart

 
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Posted 20 December 2011 - 07:45 AM

I have to say that I don't really notice that I spend more time prep-wise or at the grocery store or farmer's markets at all. Not anymore anyway, since I learned the ropes.

Plain, pure, whole foods are easy. :)

I do admit that I spend more time ADAPTING recipes. But I think that part is fun and creative. (it wasn't when I was still quite ill and incapacitated from the celiac) and could barely use my arms to shop, slice and dice.

But now, all in all, I would say the best thing about super sensitive is it reinforced my ability to scrutinize ingredients.

The down side came last week when I was reassured that the flourless cake I was eating at an upscale restaurant was gluten-free. It wasn't.... :( Turns out, it was likely CCed in the bakery where it was prepared.) I paid for that ONE indulgence IN A YEAR---for 12 days after... :rolleyes:

Live and learn--and the chef apologized profusely and asked me many questions about celiac and he learned a thing or two or three about CC from me. While he and his staff are adept at gluten-free food prep, from the way he described their approaches in their kitchen area, the cake was prepared off-premises ---and NOW he understands why that is a problem. It was removed from the menu.

He has offered to prepare a special dinner for us. :) and asked me to come in the kitchen to meet him and his staff and see what they are doing to keep it safe for all people with food intolerances. I thought he was very gracious.

Back on the Upside!!
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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

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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


#5 Joe0123

 
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Posted 20 December 2011 - 12:13 PM

There's nothing good about being super sensitive.
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#6 dilettantesteph

 
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Posted 20 December 2011 - 04:53 PM

If I could go to a restaurant when I got sick of preparing foods, I wouldn't have a problem with it. I am too sensitive to be able to do that without getting sick. I think that those of us who would complain about it are those who are too sensitive to be able to go to restaurants also.

Edited to add: I am in the extremely sensitive range. Typical celiacs can eat in restaurants.
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#7 Gemini

 
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Posted 20 December 2011 - 05:31 PM

If I could go to a restaurant when I got sick of preparing foods, I wouldn't have a problem with it. I am too sensitive to be able to do that without getting sick. I think that those of us who would complain about it are those who are too sensitive to be able to go to restaurants also.


I think anyone who is sensitive can go out to eat successfully because there are restaurants who can produce a truly gluten-free meal. I have found that it's basically the more upscale restaurants that you have success with. They have more education and knowledge. It's also prudent to complain so they know all the ins and outs of preparing gluten-free food. This is how celiacs can make their lives more mainstream and be able to go out to eat occasionally.

I don't go out often but have had pretty good success with it. I am very sensitive and have to be extremely careful but have found it can work. You just cannot go out too often....limit the risk. The other issue is that some areas just do not offer much in the way of gluten-free eating. It is not fair but it's reality. To say you are too sensitive to eat out usually means multiple intolerances, which makes dining out extremely difficult or you just choose not to eat out, maybe from lack of resources.
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#8 IrishHeart

 
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Posted 20 December 2011 - 05:35 PM

I could not possibly add anything more to GEMINI's wise response, because it is exactly the way I look at this whole thing, except this:

With all due respect, I am not going to argue about "who is more sensitive" with you. You do not live in my shoes. You don't know anything about me. But you often contradict things I say when I try to post in this section.

I am not sure why you do that?

But you're right, apparently, no one is as super sensitive as you are.

I do not live my life in a bubble. I choose to go out and enjoy life. I spent enough time in the house, crippled from UnDXed celiac for too long.

I am very cautious with my food preparation and I have recovered from being deathly ill and in chronic burning pain from Celiac. Sicker than you can possibly imagine. I saved my own life.

If I get hit from CC because I make a mistake, then I accept the consequences. It's not going to stop me from eating out once and awhile. It's not going to make me miserable and fearful.

I am very sensitive to gluten and react quickly and violently, but I'll be damned if I am going to be paranoid about it. That's no way to live.

This is a forum to express thoughts and personal experiences and I was merely expressing mine in answer to TH's question.

You do not have the right to negate my experiences and I respectfully ask you to please stop doing that.
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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


#9 GFreeMO

 
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Posted 20 December 2011 - 05:58 PM

I would eat out if I could find something gluten, casein and soy free. I have gotten sick on every single "gluten free" menu out there. Most things have soy or corn or nuts.

The upside to being super sensitive is shopping the outer isles of the store. It takes me no time at all. I am also eating healthier than everyone that I know and I have become quite the chef!

The downside - There are no gluten free cookies that taste worth a damn that don't have soy or nuts in them. I react to almost all processed gluten free foods b/c of my other intolerances so I eat nothing processed which is really hard sometimes.
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#10 mushroom

 
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Posted 20 December 2011 - 06:19 PM

I would say the upside to being gluten intolerant, period, is quicker shopping *so long as* the store places any processed gluten free food one might choose to try in a separate gluten free section. Some Whole Foods stores have gluten-free items spread all over the store to make you walk through the whole place instead of around the edges and to the gluten-free aisle :(

And I agree about the eating out with multiple intolerances. It is hard enough trying to figure out if the place can do gluten free, before you start figuring out how to keep out the corn, the legumes, the unmentioned tomato, the squeeze of lemon juice (or the whole wedge plonked on top of your salmon!) and the soy bean oil. Neverthless, I can and do eat out occasionally. :rolleyes: Not always successfully, but often enough....
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#11 ciamarie

 
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Posted 20 December 2011 - 06:20 PM

The downside - There are no gluten free cookies that taste worth a damn that don't have soy or nuts in them. I react to almost all processed gluten free foods b/c of my other intolerances so I eat nothing processed which is really hard sometimes.

Does xanthan gum count? Pamela's cookies don't have corn or soy, at least the mini ginger snap ones I have. I love those... they do have xanthan gum though.

And to answer the original question - the biggest downside for me right now is I'm still trying to figure out what's safe for me to eat. I've finally decided I probably have to give up coffee, too.

On the upside, gosh it's such a shame that I have to stick with pure maple syrup if I have pancakes or french toast! (gluten-free of course!)
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#12 Oscar

 
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Posted 20 December 2011 - 06:38 PM

If there is a common understanding here, it is that sensitivity levels vary. Steph and Shauna are at one extreme end of the scale. Their experiences are their own, and may not be applicable to the majority of us.

I was very sick for years, and had Marsh IV villous atrophy. I have since recovered completely, and more recent tests show intact villi. I have had no celiac disease symptoms for years. I eat in restaurants from time to time, and seem to survive. I eat "processed" foods from trusted manufacturers, including, but not limited to, Kraft, General Mills, Uniliver and Con Agra. I seem to survive. I eat meat, without worrying about what the animal ate. I seem to survive.

I eat fresh produce--haven't we gone on and on about "whole foods"--without worrying about whether manure from grain-fed cattle was used as fertilizer. If the manure was getting into the food, it would NOT be just the 1% of us with celiac disease that would be affected--there would be a widespread outbreak of e-coli poisoning. I seem to be able to thrive on the fresh produce I buy--horrors--at the supermarket.

Grouching session over, for now. :angry:
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#13 mushroom

 
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Posted 20 December 2011 - 06:51 PM

Gosh, Oscar, you really are a grouch!!! Who mentioned anything about manure in this thread? Okay, so you have recovered. That is great! Most people do eventually; some take longer than others.
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Neroli


"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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#14 Jestgar

 
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Posted 20 December 2011 - 06:58 PM

I eat "processed" foods from trusted manufacturers, including, but not limited to, Kraft, General Mills, Uniliver and Con Agra. I seem to survive.

hmmm...I eat essentially no processed foods - they all make me ill. It has nothing to do with gluten (for me), but I think my body just hates all the chemicals.

As for the good and the bad - I love my new awareness of what I put in my body, I hate how much time it takes to prepare every frickin' thing I eat. :angry:
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#15 Cathey

 
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Posted 20 December 2011 - 09:00 PM

It is when we stop searching the food isle we become ignorant. There is so much more for us in those isle than 30 years ago. Seek and we shall find. Fresh is better, yes it takes more time but with a little planning the family eats better. Network locally, I found a great local Bistro and had my first gluten-free pizza last week it was great. Did I throw out my own gluten-free pizza twice yeah... It all comes in time. Will I go to our favorite restaurants yes, now no way. All comes in time.
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