thleensd

Niles Crane... that's good. =) I feel like Jack Nicholson's character in "As Good As It Gets" sometimes! Not to make light of actual OCD, but I completely understand! I don't shake hands nearly as often as I used to. I'm trying to figure out good responses to that one. To cope with the hand shaking situation, things I've done/said:

"Oh, sorry, my hands are wet"

"I'd shake your hand but I just got something sticky on my hand"

"I have a cold"

Bow. Deep bow. Bow with hands in prayer position. This works really well in some cultures. Here I pretty much get funny looks, unless I'm at a yoga retreat or something

Hold purse in one hand, water bottle in another, look awkward and smile. Works best if you're also juggling a couple extra items.

If they're eating a muffin or something, and switch hands to shake, they get an actual response about me being "allergic" to what they're eating.

Most of the people I spend time with on a regular basis know that my doc still considers me "immunocompromised" ... so, it's not just the gluten issue, but germs. They get hugs or fist bumps.

Mostly, I've become more aware of not touching my mouth/face, especially when I'm doing something like grocery shopping, or in a professional hand shaking situation where I need to touch a lot of stuff. ...and I joke a lot about living in a bubble.

When I use the atm/grocery store keypad, I usually use the corner of my card (some machines are too covered for that) to hit the numbers.

I guess the secret is to figure out the difference between precautions that NEED to be taken for our own individual safety vs what is excessive. From my perspective, all of the little quirks I've adopted don't seem excessive because I have a good reason to back them up. Laying on a bed in the ER or curled up on the bathroom floor kind of breeds that mentality, doesn't it? I have to laugh at myself sometimes because it helps me (and others) cope. When it comes down to it, it's not that funny.

I have a hand cranked Country Living Grain Mill.

Caution: when it came it had a sample of wheat inside which they had used to test it. I sent it back and got another, which was still fairly contaminated. It took extensive cleaning.

I have ground corn, millet, sorghum, buckwheat, amaranth, quinoa, garbanzo beans, lentils, rice, I can't remember them all.

What I liked about this mill is that it had an adapter for large things, and it was strong enough to grind popcorn, which a lot are not.

GAH! Seriously? I wonder if they can test it with something other than wheat. Sounds scary.

Easy to take apart and clean or no?

Do you grind nut flours in it?

I would work on the grinding it myself if I were you. I sort, wash and then grind. I can understand the texture problems. I finally invested in a good grinder. I think that it is too hard to find clean starting materials, one source of cc and then too hard to make flour without adding more cc in a facility. There are shared facility issues, and cleaning supply issues, and worker sloppiness issues. Then when you have more than one sensitivity, you are really asking for trouble when you are a super sensitive celiac/gluten intolerant.

What kind of grinder do you use? What kinds of flours do you grind?

I get nuts from nutsonline and like them a lot =) ...I worry because of the other things they might grind (Like I said, I don't know how sensitive I am to things like corn CC. My corn issues came on at the same time as my celiac issues. Weird.) Maybe I can call them and ask what else they process with the same equipment. Thanks.

Hey my sensitive people!

I've gone totally grain-free and am liking the results so far. I know a few of you have problems with Bob's Red Mill products, so maybe you can help me.

I have sensitivity to corn for sure, but no idea if corn CC affects me. I am avoiding Bob's for the time being - possible issues with oat CC or...? Uncertain.

At the moment I'm grinding my own almonds, but can't quite get them fine enough for some projects. I've tried various combinations of blending/food processing/roasting/freezing.

Can any of you recommend good brands for non-grain flours? I'm particularly interested in almond and coconut flours for the moment, but hope to find other nut flours, legume flours, and other grain-free alternatives (seed? veggie?)

Thanks!

Gluten Free kitchen. It's worth my health and sanity.

While my gut was in the early healing process, I couldn't handle nuts, even safe ones. My body just couldn't break them down-they're hard to digest. Lay off of them for a while and give your body some time to adjust. It honestly took me a good year, but I was pretty damaged. I was able to handle natural (pure!) nut butters pretty quickly though - almond and sunflower.

If you can find a safe source, try some smaller quantities - maybe softer nuts and seeds like raw sunflower seeds or cashews.

I usually buy mine from nuts online. com

Great question. I hope someone can find a scientific article with some solid facts, but I don't know if research has gone quite that far... at least the placebo controlled/double blind types of studies.

Based on what I've read, I have a couple of guesses. Note the word guesses. Sorry. (They aren't totally blind guesses, though!)

-Inflammation. We know that gluten causes inflammation of the gut. Having an auto-immune disease means that we react (and over-react?) to normally "safe" substances. This is an article on inflammation in general. I don't know the mechanism, but I wouldn't be surprised if the inflammation does not limit itself to the gut.

Open Original Shared Link

-This might be more controversial, but intestinal permeability ("leaky gut") could play a role - substances cross over the gut barrier that are not supposed to, leading to multi-systemic issues. Traditional western medicine is starting to recognize and research intestinal permeability, and some studies indicate that inflammation leads to permeability. That pretty much "allows" the gluten dominos to start to fall and reach other body parts.

-This article: Open Original Shared Link is a bit scientific, but it explores the neurologic connection in Celiac. What it comes down to is that there is a lot they don't know. It's not about joint/muscle pain per se, but more related to brain/nerves:

"While advances have been made in understanding the pathogenesis of the intestinal lesions in celiac disease, the patho- genesis of the neurologic manifestations has yet to be elucidated. Current data point to molecular mimicry and intermolecular help as two possible mechanisms that could explain how ingested gluten can result in damage to the neuraxis." In other words, they are starting to understand fully how the gut gets messed up, but they're trying to figure out why the rest of it happens.

Here's a link to Fussy Cat. You can also buy it online from that company that starts with A and is a river in South America. =)

Open Original Shared Link

My cat gets fussy cat. All of the ingredients are actual recognizable food ingredients, and it looks like pieces of fish, shrimp, etc (she doesn't like any of the chicken varieties). Can't get it at a regular grocery store, but my cat loves it, and it's a good price (though a smallish portion). For dry we use Taste of the Wild. There are quite a few grain-free cat foods now. If you have a higher end pet store, ask there.

One of my friends is a bar tender. When I mentioned vodka/tonic as a safe drink she laughed...Most bars have huge potential from CC, and they are just not very safe places. Think of all the beer. Pre-celiac I remember seeing a glass rim-side down on a bar covered in beer. I think the bartender just kind of wiped it off and used the glass anyway.

Often selzer/tonic water comes in those little guns that also connect to various soft drinks. I've seen drinks prepared where they dunk the whole head of the thing in whatever drink it is.

It's a pain, but if you're going to drink out, make friends with your server or sit at the bar so you can watch them prepare your drink.

I've discovered I'm better off grain-free. I'm still not healthy/independently functional yet (need help with cooking, chores), but I took a big step up when I cut out grains. I've known for a while that I can't tolerate corn or many of it's related products like Xanthan Gum.

I'm wondering how careful I need to be with corn alcohol (specifically that which is in vanilla extract). I have a nice sized bottle I'm not thrilled about throwing away (or giving away...I suppose that's a better option). I bought some lovely grape vodka to make my own, but meanwhile, I'm not sure if I should be using this stuff. The problem is with corn and other grains I don't have an outright "reaction", I'm just tired all of the time or brain foggy or mildly bloated which comes and goes anyway. =/

Do any of you find you have to avoid corn alcohol?

I'm not really looking for a lecture on the distillation process, by the way. I know how that works. I just don't know what PART of corn bothers me, and seeing as I'm sensitive to something like xanthan gum, which is simply grown on corn (but it might not even be because of the corn) or corn maltodextrin, I'm looking for experiences and/or anecdotal evidence.

Yup. Was 18 and falling (no one told me until an observant doc looked back at the numbers months later), went on 50K for 6 weeks-brought to 59, supplemented at 2k/day, dropped to 46 (still normal, but didn't like the direction), now I take 5k multiple times per week (3-6) and I seem to be holding pretty steady: 56. Consider looking into taking magnesium with the D.

Now if I could only get my iron stable...

Last night I dreamt I ate half of a burrito before I noticed. It's been 2.5 years since I went gluten-free. The good news is, I don't get those dreams nearly as often as I used to.

At times I've wondered if they're connected to stress (I've had a lot of stressful dreams this week), but I've had them even when I don't seem to be under a lot of stress. More when I'm stressed, though.

I did wake up with a stomach ache (which I still have), so the dream could've been a reaction to the physical sensation.

You're definitely not alone in this! =)

That is wonderful! I'd love to see a meeting like that here... not just "this is a good recipe for rice bread". It is hard for many people to understand the emotional difficulties many of us face/have faced.

How many people were there at the meeting?

+1 for the urban legend that won't die theory.

That being said, I don't lick anything that I didn't wash, grow, or read the label on. Please pass the envelope sponge or a damp paper towel!

Of course, now that I'm also corn-free it's not even a question, I don't lick stuff. Well, except that one frog in that one rain forest..... ;-)

Wow, that's great! Of course, I don't know how they'll give you meds. I guess IVs.

I've recently gone grain-free, because I'm apparently super sensitive, too. My health has improved a lot since then. I'm not sure what to do about that same issue. I guess if I have to have a prescription I can get them from a compounding pharmacy, but in an emergency, it is tough!

Are you planning to wear a bracelet all the time?

Health is more important. I'd urge him to look for a new, less floury job!

Just say no to oats. At least for a while. Some of us have problems with the gluten-free oats. You need to be gluten-free for a long time before trying them (at least a year), then limit your amount AND check back with a doctor in 3-6 months.

Not worth the risk for me. Give it a year, then you can decide if it's worth trying again.

Parts per million is kind of difficult to imagine, because it's milligram per kilogram of food. So, it really depends on how much potentially tainted food you're eating. Less than 20ppm could mean 0 or it could mean 19.

According to this website: Open Original Shared Link

I received the same email today, and am concerned about 20 ppm being considered gluten-free. Many of us react to these low-gluten amounts.

I hope that many of us (even if you do not personally experience an outward reaction to 15ppm) will voice that issue.

Gluten-free needs to mean gluten-free! Low gluten to me is 20ppm. If testing and good manufacturing practices are available to make products with no gluten (how low can they detect it now?) they should do it.

I am unhappy at the suggestion that 20ppm is gluten free. It is most certainly not (see peanut comments...people seem to "get" that). Gluten free should NOT be exploited as a marketing gimmick for fad dieters, but a medically necessary piece of information for those of us that need it. There is no point in labeling something gluten free when it is not.

Yes! I am currently putting my thoughts together to submit to the FDA. One option is to have a "low gluten" label and a "gluten-free" label. Would a company sell a product and claim it was peanut-free if it has 20ppm of peanut in it? I doubt it.

Low-gluten labeling would give the gluten-free trendies and the less sensitives what they need, and gluten-free labeling for the rest of us that really need that info!

You guys are the best, thanks. I was so excited to see the glass storage containers. Some of my meals are for three, but I eat 2x more often... and I'm not a big fan of eating the same meal 2 or 3 times in a day!

My malnourished celiac brain-fog is staring to recede, but I can't think very well when I need to eat (come to think of it, I'm not very coordinated then either... I'd fail a sobriety test when hungry ), so on top of all of it, learning how to get organized sounds like a good idea. =) ...now if I can just follow through.

....and I'm TOTALLY going to get a disco bulb/ball for my fridge! =D

I read an article about a family in Rexburg ID that would bring their own bread for their family. They had to get some buy in so the teenage boys that handle it knew about how easy cross contamination was. Turns out there were others in the ward that needed to be gluten-free and eventually they had a whole tray of gluten-free bread that went to those who needed it.

Keep talking to leadership. Your DD should in NO WAY compromise her diet. If nothing else, bring a bite of your own bread/cracker and just eat that.