What Does Super Sensitive Mean?

[Korwyn]

  On 10/12/2011 at 11:03 AM, diandliam said:

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.

  On 10/22/2011 at 11:02 PM, violentlyserene said:

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

Nuts.

  On 10/22/2011 at 11:21 PM, mushroom said:

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

What if we react to mushrooms?

[mushroom]

  On 11/18/2011 at 12:36 PM, Korwyn said:

What if we react to mushrooms?

You're lucky

[Di2011]

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.

[weluvgators]

  On 11/18/2011 at 11:39 PM, diandliam said:

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:

Open Original Shared Link

[Di2011]

  On 11/19/2011 at 2:24 AM, weluvgators said:

You may be interested in learning more about how mushrooms are grown. Here is one link I found:

Open Original Shared Link

Wheat is everywhere 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!

[violentlyserene]

  On 11/17/2011 at 5:44 AM, diandliam said:

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

Food! I've been eating a whole lot of stir fries and kabobs (both actual kabobs on a stick and the stuff I'd put on the kabobs just roasted in a draining pan). Potato shepherd's pie is a favorite here as well.

[Di2011]

These are good tricks! I've been going through a subtle conversion at home so my 9y/o doesn't notice we are gluten free and these are working like magic. I'm not really sure but I think he might have got a really severe case of "anti gluten free" from family.

Kids love stuff on sticks and he loves sherperds pie@!

Anything that isn't lick "meat and 3 veg" works!

[cait]

I can't figure out if this is my problem or if there's something else I'm missing. I felt great initially after eliminating gluten. Then stuff started to creep back, so I changed my antidepressant (had trace gluten-derived ingredients in the coating) and again felt better. I was still running into gluten frequently, so we made the house gluten-free, and that helped. Then we traveled over the summer and stayed in gluteny households, and then the school year started again. I work with 4 and 5 year olds, and breakfast, snack, and lunch are eaten in the classroom. Naturally much of it is gluten. My energy level has been sliding, and I'm back to being pretty flattened most of the time. I did an elimination diet, and determined that corn, dairy, and soy are also issues, so I avoid them. I react to things that some oat sensitive people have mentioned problems with, so I suspect that, though I haven't tested it yet. Am returning to meat after decades of veg life. I'm still just exhausted, and running into more joint pain than I had in a while.

When I ingest something with gluten CC, I get GI symptoms, headache, achiness, extreme fatigue, etc. I know I've CCed myself in the classroom by eating my lunch while doing other things. (I avoid that as much as possible, but there are days where it's either eat while working or don't eat at all...) What I'm trying to figure out is if the constant presence of gluten in my classroom could be contributing to my fatigue and returning joint pain, or if that's likely to be due to something else.

What do you think, oh wise super sensitives? My dad, who is diagnosed celiac (I am not) thinks I'm making too much out of this. Of course, he also is happy to chug some pepto and keep going, rather than look at where the CC is coming from...

[Di2011]

  On 11/27/2011 at 5:26 PM, cait said:

What do you think, oh wise super sensitives? My dad, who is diagnosed celiac (I am not) thinks I'm making too much out of this. Of course, he also is happy to chug some pepto and keep going, rather than look at where the CC is coming from...

Interesting attitude - why on earth would anyone want to feel this way?!

I can't avoid all the bread etc in my kitchen job but there are a few things that have helped enormously. I wipe benches constantly. The place has never been so clean. Fortunately the boss has excused me from handling bread/toast so I made it my job to follow up behind the others and clean up the mess. I wear powder free gloves the whole time and replace them whenever I've come into contact with bread etc. I often go through 3-4 sets in an hour or two.

Would it be practical/possible to wear cotton gloves whilst at work? I wonder if you could make it part of your routine to wipe benches after meals/snack time. Perhaps at their age the kids could "help" Do you have sink/bathrooms for them/you to wash after eating?

I've had to go fairly extreme to deal with my crazy DH so this is just to let you know what worked for me:

After slow slow progress I eventually went back to basics meat/veg/fruit/rice/rice noodles.

Now I can add in ONE ingredient/product to test my reactions. I generally wait for a few days before trying the next. Usual two a week at most. If something works I give it three goes (ie new packaging).

I still haven't found a chocolate that works for me and my DH (I suspect iodine but who knows!) and I ate raisins that gave the whole gastro/DH flare/brainfoggy business for days (what I believe to be my CC reactions).

There are many gluten-free products that haven't tested well for me but there is one brand here is Australia that makes a couple of cereals that I now eat occasionaly. Simple with none of the gums/chemicals/additives/salt etc.

This has all been hard work but it has made a MASSIVE difference for me. I'm glad many/most (?)celiac/gluten intolerants don't need to do this.

Have you been through your bathroom/cleaning/laundry/makeup products?

[dilettantesteph]

  On 11/28/2011 at 3:38 AM, diandliam said:

I've had to go fairly extreme to deal with my crazy DH so this is just to let you know what worked for me:

After slow slow progress I eventually went back to basics meat/veg/fruit/rice/rice noodles.

Now I can add in ONE ingredient/product to test my reactions. I generally wait for a few days before trying the next. Usual two a week at most. If something works I give it three goes (ie new packaging).

I still haven't found a chocolate that works for me and my DH

This strategy has worked well for me too. It is difficult, but well worth it.

You people with DH can be very helpful to those of us who don't have it.

What brand of rice noodles do you tolerate?

I can't find a chocolate either. I tried very hard. I tried all sorts. If you come up with one, please let me know. I don't care if I have to order it from Australia. I love and miss chocolate.

[Di2011]

The rice noodles I have at the moment is from Thailand: "Erawan Brand" Try oriental.com.au (the Australian importers). I bought this at our regular supermarket. So cheap too! I've had this one three times without any issue but only from the one packet.

I find that the Thailand produced rice noodles in general are reliable. I'm guessing they are such a staple that they are likely produced in dedicated facilities.

Trident rice noodles have been very reliable: Open Original Shared Link

If you are keen check out this lot: Freedom Foods

Open Original Shared Link

Have a read of the "How we do it" section :D

Another section "Buy our goods" then subsection "For your pantry" there is a website to order online.

I can't tolerate the muesli for some reason (could be sals intolerance) but the simple cereals are good. Make sure you check ingredients if you do order on line.

BTW I'm not affiliated with them in any way.

I'd like to think I can share some advice. Wouldn't ever want to share this DH with anyone though!

[dilettantesteph]

Thanks for the advice. I definitely don't want the DH.

[queenlamoni]

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.

[Di2011]

  On 11/29/2011 at 9:05 PM, queenlamoni said:

Thank you all for sharing your stories, I don't post much because it seems like whatever I was about to say was already shared. I also tend to come on here when I feel pretty rotten, like today. I thought I was the only one who got a reaction from particulates in the air. I had gone to a friends house for an hour while their she had pulled a cake out of the oven she had made from scratch and put in to bake before I got there. I could not believe the severe reaction I had the next day (nerve pain, mood change and fatigue), so I do my best to avoid the bakery section of the grocer in the morning.

Do any of you have strange or unusual reactions to medications that are gluten free?

Hi queenlamoni!

My DH has been so bad that most days are rotten but I totally understand how you feel: this is a place of sanity for me especially in the worst of times. I don't necessarily always offload (but have often!) and hope sometimes to help others who were in the state I was six months ago.

Airborne is (at the least psychologically) a problem for me. Flour is a fine particle like dust so I am now learning to accept that me and flour don't mix. I don't have any problem when I have worked with gluten-free flour mixes despite my anxiety pulling them out of the cupboard. Digesting them (gluten-free) has been in some circumstances ((who knows why !@!@!@??) but never handling them myself.

And you might want to repost to a new thread or do a search on here regarding medications. I don't do meds but know there is plenty of chatter on this forum. If you have specific meds then do a search and see if there is anything you can learn from previous posts. If you have a specific question, after doing that, start a new chat.. probably in "celiac disease - Coping With"

[dilettantesteph]

  On 11/29/2011 at 9:05 PM, queenlamoni said:

Do any of you have strange or unusual reactions to medications that are gluten free?

There has been a grant awarded to study gluten in medications. Open Original Shared Link

You aren't the only one having this problem, I guess.

I bet that there was still flour left in the air from when your friend made the cake. It says in this reference that it is well known that flour can stay suspended in air for 24 hours. Open Original Shared Link

This is a reference on airborne particulate matter. Open Original Shared Link

[cait]

  On 11/28/2011 at 3:38 AM, diandliam said:

Interesting attitude - why on earth would anyone want to feel this way?!

I can't avoid all the bread etc in my kitchen job but there are a few things that have helped enormously. I wipe benches constantly. The place has never been so clean. Fortunately the boss has excused me from handling bread/toast so I made it my job to follow up behind the others and clean up the mess. I wear powder free gloves the whole time and replace them whenever I've come into contact with bread etc. I often go through 3-4 sets in an hour or two.

Would it be practical/possible to wear cotton gloves whilst at work? I wonder if you could make it part of your routine to wipe benches after meals/snack time. Perhaps at their age the kids could "help" Do you have sink/bathrooms for them/you to wash after eating?

I've had to go fairly extreme to deal with my crazy DH so this is just to let you know what worked for me:

After slow slow progress I eventually went back to basics meat/veg/fruit/rice/rice noodles.

Now I can add in ONE ingredient/product to test my reactions. I generally wait for a few days before trying the next. Usual two a week at most. If something works I give it three goes (ie new packaging).

I still haven't found a chocolate that works for me and my DH (I suspect iodine but who knows!) and I ate raisins that gave the whole gastro/DH flare/brainfoggy business for days (what I believe to be my CC reactions).

There are many gluten-free products that haven't tested well for me but there is one brand here is Australia that makes a couple of cereals that I now eat occasionaly. Simple with none of the gums/chemicals/additives/salt etc.

This has all been hard work but it has made a MASSIVE difference for me. I'm glad many/most (?)celiac/gluten intolerants don't need to do this.

Have you been through your bathroom/cleaning/laundry/makeup products?

Thanks for your thoughts.

We do wipe tables and sweep after they eat, but it's never terribly thorough. It's a fine line, management-wise. Time spent cleaning is time I'm not reading, singing, or otherwise working with a squirrely bunch of little guys after lunch. So there's generally a point where I have to stop the cleaning and move on to a new activity before chaos takes over. I have them help, but they're little, so they're even less thorough than I am. At the beginning of the year, I had them go wash up after lunch, and I still try to. However, we don't have bathrooms in our classrooms, and we are solo during lunch, so I can't monitor them when I send them down the hall, and while most are quite responsible, others get into trouble unsupervised. Basically, the things I need to do to protect myself conflict with the reality of managing a classroom of 22 4 and 5-year-olds...

I have gone through body/household products, so I don't think that's the problem. My vitamins, etc, were all gluten-free, but I'm switching to ones that are also corn free, so we'll see if that helps. If not, I may need to do the super elimination diet route. Ugh.

[Di2011]

Hi Cait,

I hope you don't have to take the crazy route!!

Let us know what happens when you take the corn free meds/vitamins.