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What Does Super Sensitive Mean?


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#16 Di2011

 
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Posted 13 November 2011 - 03:27 PM

Nothing to do with Super sensitives but because you have bakery experience maybe you should get a job at deeks - grain free bakery/cafe in Canberra. https://secure.deeks....au/index2.html

It is a great cafe/bakery! But unfortunately I look at bread, cake etc now and my body/brain almost have a seizure :blink: Even walking past it all in the supermarket makes me nervous.
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#17 lovesaceliac

 
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Posted 16 November 2011 - 08:40 PM

I'm also trying to figure this out (without health insurance.) Last time we forked out the bucks to go see a gastroenterologist was about 9 months after my husband went gluten free. Within a week of the new diet he said, "I'm never going back!" and in a month he had lost 20 lbs and regained a color, postive mood, and general health that I hadn't seen in him for over a decade. We were thrilled! About four months later, all the old symptoms started coming back: joint pain, insomnia, depression. So we changed to the name brand form of the prescription he takes that we could be sure was gluten free. Once again, feels better. Another four months later, all the old symptoms start coming back. Ok, pay for a doctor's visit. Dr. says he's positive husband has celiac disease, but that he'll have to go back on gluten to have it diagnosed. Husband says, "no way!" He's going to stay gluten free because he knows from first hand experience that it's the right thing for him. So I convince him maybe he's getting cc'd at home and the whole house needs to be gluten free. He hates to inconvenience us, but agrees. Again, feels better.

Now we've spent over two years gluten free. We've learned a lot. The house is gluten free. We know where to look for disguised sources of gluten. We only buy products specifically labled gluten free (i.e. we spend A LOT of money on groceries.) And now all these restaurants are coming out with gluten free menus...but he gets glutened all the time! He's been glutened at PF Changs, horribly glutened eating the "gluten free" pizza at BJs, and by so many other meals ordered off of "gluten free" menues. As a result, we just don't go out hardly ever and if we do, it's to one of the two 100% gluten free restaurants in our area (both expensive, neither filling.) I watch a friend of mine who has celiac disease selecting the "gluten free" items off the buffet at a church party...all surrounded by fried chicken and biscuits and think there is NO WAY my husband could eat anything there without getting totally sick. I see people on these forums recommending pizza joints that now have gluten free pizza. There's no way he could eat a gluten-free pizza from a pizza place that also makes wheat crust and survive it. Traveling is so frustrating. I try to do searches for gluten free restaurants and can't trust any of the results. Are we doing something wrong or is he just that sensitive/different from "normal" celiacs? Yes, I know the response might be that there are reactions to other foods. We've explored that, we know he doesn't do well with too much milk or processed sugar - but would the reactions to other foods be identical to the gluten reaction? The gluten reaction is pretty miserable and pretty consistent (a three day progression of symptoms that we both can almost set our clocks to.)

Way too long of a post. Needed a little rant. Hoping for some encouragement. I think my usually supportive self is being undermined a little by the approaching holidays and the realization (again) that there won't be any apple pie. Dumb thing is, I don't even like apple pie. I just loved making it for him. I'm an artist and I used to make beautiful crusts. You can't make a pretty gluten free pie crust. I can't at least.
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#18 Di2011

 
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Posted 16 November 2011 - 09:44 PM

lovesaceliac - what an appropriate name for you! You are an amazing wife. AND you have just as much reason to have a rant every now and again. We do so you should too. Better than having a breakdown huh??

Sorry but I can't give you much advise about other food allergies. I'm still learning so much and on my basic diet there isn't much to get allergic too :lol:

Have you checked and cleared the cleaning / bathroom products?

Don't forget to take a look at your clothes washing detergent. Years ago I stopped using any of the powdered type because it irritated my skin. I use a cheap but simple (limited ingredients eco type ((I'm in Australia - Aussie product)). I've been using it for years and is economical and no problems with the skin.

I don't travel or eat out much but am lucky there is restaurant up the road that I use to work in. They change their fryer oil and the friers are seriously cleaned everyday, religously. The chips/fries are gluten-free and they rarely use the dedicated chip frier for other items. I know them and they know my problem so I just have to check with them that nothing evil has made it into the chip fryer. I can have a really yummy steak on stonegrill (cook at table on hot stone yummo) salad and chips. Not once had a problem.

I'm not sure I'll eat out anywhere else until I can replicate this arrangement.
I've had a couple of weekends away. The first was a disaster and what finally sent me down this path to superGlutenFree.
At one place there was a restaurant down the road and my marvelous Mum went down and spoke to the chef. She convinced me that he was very attentive to her questions about me eating there. So we get there for dinner, order the gluten-free dinner and out comes this yummy looking chicken, salad and... battered chips. :) :blink: Some people mean well.
The second weekend away I ate a lot of fruit, Avocado/tomato and rice thins, and one very reliable gluten-free brand of cereal. I was hungry but it got me through.
I try to stick to no more than one processed (cereal, rice noodle, rice/cornthin) serve a day - hard but now seeing some serious improvement in the DH yeehaa :D :D :D :D

Its been a long six months of experimenting and reading though... About time I get a life, a decent job and earn a living. That is my next experiment. I don't think I'll be hanging out in any lunchrooms/cafes :lol:
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#19 Di2011

 
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Posted 16 November 2011 - 09:44 PM

Tell me more about your diet? What do you all like to eat?
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#20 T.H.

 
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Posted 16 November 2011 - 10:27 PM

Are we doing something wrong or is he just that sensitive/different from "normal" celiacs? Yes, I know the response might be that there are reactions to other foods. We've explored that, we know he doesn't do well with too much milk or processed sugar - but would the reactions to other foods be identical to the gluten reaction? The gluten reaction is pretty miserable and pretty consistent (a three day progression of symptoms that we both can almost set our clocks to.)


From the people I'm meeting, it seems that for some, the symptoms are the same for other food issues AND for the gluten reaction. Often, these seem to be broader symptoms, like the gastro trouble that can hit for both gluten and lactose intolerance. If the symptoms are very consistent, however, especially in a precise pattern, that seems to be gluten specific most of the time that I've seen. At least, that's how it seems to me on reading others' posts, and that's been my own experience.

At first, I wasn't sure what symptoms went with what on my own diet, but after a while, there emerged a pattern with getting glutened that is distinct from other food reactions. There is some cross over of symptoms, but the same pattern of symptoms is the key, for me.

So it's entirely possible he's just that sensitive. Which I agree, is frustrating as heck! My daughter is in the same boat, where she kept getting glutened at restaurants more and more until we just don't go. I still remember my first time going to our Celiac Group meeting. We'd been trying to go out to eat, doing all the things we were reading on the web about talking to the manager and being careful, and still getting sick.

I was thinking that the group would have some great insights that would help us figure out what we were doing wrong, you know? Because that's what you think at first: I must be doing something wrong, because none of this is working for me.

They were a lovely group of people, very helpful and sweet, but they recommend all the restaurants that we'd all gotten sick at, and the products that we were getting sick from, and it was so upsetting to get all that great advice and have it be of no help at all. I remember wondering why in the heck we couldn't do it, because it seemed to be working for everyone else.

Hooking up with other folks who have to be just as careful, whether for gluten reasons or other food issues combined, has been of great help. Sometimes just because it helped to realize we weren't alone in this. Recipe ideas and thoughts on travel from people with similar problems have been invaluable. Even knowledge about restaurants that are completely gluten-free in different areas of the country (or countries), like the one called Picazzo's that we found in Arizona, have been so helpful.

Wish I had better advice on the restaurants, but that's one hurdle we're still unable to overcome ourselves. I'm just trying to find more outdoor venues for eating, at parks and such, where the kids can play and we can enjoy the good weather. So eating out is kind of seasonal for us now, LOL.



And just a big freaking hug re: the apple pie. I am a pretty bad cook, but the ONE thing I could make was pie, usually apple or blueberry, which I'd make for my hubby because he loved the stuff. And now I can't have the flour to make it in the house. And there's just something sad about that. It does feel a little silly to mourn something that we're not even eating, but I think it's more about the, I don't know, tradition and a way to express our affection for each other that's just gone all of a sudden.

Like being told you can no longer hold hands. Maybe you didn't hold hands a lot, but being told you can't do it anymore, you'd miss it, you know?

Again, I'm a terrible cook, but there was something we were messing with last year that might be something you could work with? We got baked sweet potato, then got orange juice we boiled until it had reduced to 1/2 or 1/3 the original volume. Mixed the two together.

Then chopped and peeled apples.

I think when we tried it, we spread the apples with seasonings and sweetener on the bottom of a pie pan and spread the sweet potato on the top and baked it until done. Might've cooked the apples a little ahead of time. But...maybe you could work with something like that, put decorative apples along the top, that sort of thing, make it pretty? Like sprinkle tiny chopped up apple mixed with something sweet along the edge of the pan on top of the sweet potatoes? (I know, bad cook...I have no idea how that would even taste, LOL)

Not the same, I know, and wasn't sure if a substitute is one of those things that would make the loss sharper, or if it would help.


If something else might be nice for dessert, I know your hubby has to keep dairy low and sugar low, so this would be a dessert he'd only be able to have a teeny bit of at a time, but if you care to make a cheesecake, I think this may be the best freaking cheesecake recipe I've ever seen in my life, ever. It's crustless, too. People fought over getting the last piece when I last brought it to a party. :-)

http://www.cookingde...cheesecake.html

Took like 4 hours to make the thing for us, but from the reactions on eating it, it was worth it. :-)
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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


#21 Di2011

 
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Posted 17 November 2011 - 01:05 AM

Yet again T.H. comes to my rescue.

I owe you a good truely great gluten-free meal.

You must be one hell of a woman :D :D
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#22 T.H.

 
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Posted 17 November 2011 - 08:21 PM

I"m glad it helped!

Heh, I don't know about one hell of a woman, but my tween daughter told me her friends voted me the coolest mom they all knew, LOL.

....which probably means I'm so immature I can bond with tweens, ha! :lol:
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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


#23 lovesaceliac

 
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Posted 17 November 2011 - 08:41 PM

Wow...thanks for the compassionate responses. This forum has been so theraputic for me. My first night on, I was up most of the night feeling so validated by reading what seemed like our experiences over and over again. It was so nice to feel like we weren't crazy when even loving family members had a hard time masking their disbelief that this is "real."

It really is mourning isn't it? I just grew up watching my mom make pie for my dad. I am surrounded by a culture of women who bake bread for their families. Thanks for the cheesecake suggestion...I had kindof forgotten about that. I had been wanting to try a white chocolate rose cheesecake a few years ago - maybe I'll pull out that ambition again. And will definately try out your recipe. I'll also go looking for holiday ideas. I bet there's lots out there.

I made a pumpkin pie last night and it turned out great. I guess single crust pies are the way to go (since the gluten-free crust is iffy, might as well do pies that don't need too much of it.)...oh, and I'm not a great cook either. That's why I have to rely on my food looking good! :)

I guess I should be thankful that there are the two 100% gluten free restaurants in our city. That's probably more options than some have. It's just frustrating - while I'm thankful that there's so much new awareness I also get discouraged seeing restaurants on the state's celiac organization's website that he's been glutened at.

Could we somehow create an "approved by super sensitive celiacs" restaurant list!?
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#24 lovesaceliac

 
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Posted 17 November 2011 - 09:04 PM

Tell me more about your diet? What do you all like to eat?


That's hard to answer. I feel like I'm still figuring that out (almost three years later!) My husband is the great cook in the family and as a matter of scheduling/division of labor - I do most of the cooking. We love ethinc food and I'm not great at that kind of cooking. That's where we really miss going out: Indian, Thai, Veitnamese, Ethiopian - how I wish we could go out for Pho! And that's where I get really frustrated. Folks on these forums talk about accomodating managers and servers who explain ingredients...but I just can't trust any restaurant, well meaning or not. I've been guaranteed by restaurant staff that the kitchen manages cc...and then we've lost three days of our lives while he's sick. It was about a year ago that we had to write off all restaurants. Funny that I envy other celiacs and long for just plain old gluten intolerance! I need to find time to take some cooking classes.
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#25 Di2011

 
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Posted 18 November 2011 - 03:57 AM

That's hard to answer. I feel like I'm still figuring that out (almost three years later!) My husband is the great cook in the family and as a matter of scheduling/division of labor - I do most of the cooking. We love ethinc food and I'm not great at that kind of cooking. That's where we really miss going out: Indian, Thai, Veitnamese, Ethiopian - how I wish we could go out for Pho! And that's where I get really frustrated. Folks on these forums talk about accomodating managers and servers who explain ingredients...but I just can't trust any restaurant, well meaning or not. I've been guaranteed by restaurant staff that the kitchen manages cc...and then we've lost three days of our lives while he's sick. It was about a year ago that we had to write off all restaurants. Funny that I envy other celiacs and long for just plain old gluten intolerance! I need to find time to take some cooking classes.


Oh my I know how it has been for you! I have always loved anything that wasn't "meat and 3 veg" (not sure if that is an Aussie saying). Lots of flavour, spices etc
I'm reckoning that Asian (Indonesian/malay/korean/japanese etc) from scratch might be my saviour. Lots of rice, fresh spices etc Once upon a time and until very recently the Asian nations didn't do wheat anything.
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#26 Korwyn

 
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Posted 18 November 2011 - 04:36 AM

I have been researching and reading so much but what does "super sensitive" mean to you? There doesn't seem to be medical definition



Dilanttesteph pretty much nailed it IMO. I consider myself super-sensitive as I will react to many things produced in a shared facility. If it is produced on the same equipment, based on the last couple years response, I'm guaranteed to react so I don't even touch anything produced in a shared facility. Which is why Trader Joe's is out for me. :(

Where do celiacs who don't react to anything but something like a piece of cake fall on that spectrum?


Nuts. :P

My personal opinion is that that celiac would fall on the "playing with fire" part of the spectrum :unsure:


What if we react to mushrooms? :D
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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! :(

#27 mushroom

 
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Posted 18 November 2011 - 11:53 AM

What if we react to mushrooms? :D


You're lucky :D
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#28 Di2011

 
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Posted 18 November 2011 - 03:39 PM

What a fun bunch you all are! It is so nice to have a laugh. Neighbours must think I am crazy laughing here at home on my own. My son is loving having fun mum back.

Mushrooms: I eat them nearly every day, versatile and such an easy preparation compared to most other ingredients!!

Shared facilities are evil and those that don't declare it when questioned, or pad out responses to try and fool, are the most evil.
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#29 weluvgators

 
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Posted 18 November 2011 - 06:24 PM

Mushrooms: I eat them nearly every day, versatile and such an easy preparation compared to most other ingredients!!


You may be interested in learning more about how mushrooms are grown. Here is one link I found:
http://www.scatoplus...oom_growing.pdf
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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

#30 Di2011

 
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Posted 18 November 2011 - 08:36 PM

You may be interested in learning more about how mushrooms are grown. Here is one link I found:
http://www.scatoplus...oom_growing.pdf


Wheat is everywhere :o Thanks to the heavens I haven't yet had a problem with them!!!
There are still old train tunnels used for mushroom growing in NSW, Australia!
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