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Member Since 11 Aug 2009
Offline Last Active May 29 2015 05:40 PM

#750737 New And Seem To Be Super Sensitive

Posted by on 25 November 2011 - 03:12 PM

I called the company. The young guy said he couldn't give me a list of all the non- regulated stuff. It's secret. But what was I concerned with? I said "wheat". He said, " wheat?". I said I have an allergy. That was all he needed to hear. He took a few minutes to read all the ingredients and the source of an ingredient if relevant. He said that it had no wheat.

I would think that approach would work for most companies.

Hopefully so. I've had good luck with the few companies I called, as well. Kind of funny that I had better luck with companies in construction, when dealing with food allergies, than with some of the food companies I've called. :D
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#750735 Labeled gluten-free But Really Not

Posted by on 25 November 2011 - 03:09 PM

I don't understand what you are saying. Would you please explain?

Sure, no problem. There are a lot of mexican restaurants where I am and some of them make their own corn tortillas and/or corn tortilla chips from scratch in the restaurant as a selling point, rather than purchasing them pre-made. I remember a couple of them using the term 'in-house' to describe where these products were made: in the restaurant rather than out of the restaurant.

For some of these, we've been told that they used either wheat flour in the mold for the corn tortillas or wheat flour was used during part of the process to make the chips, frequently to coat the roller that was being used to roll out the chips.

The ones that didn't use wheat flour tended to use corn starch or more dry corn meal or corn masa.
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#750719 Labeled gluten-free But Really Not

Posted by on 25 November 2011 - 02:11 PM

whoops, missed that there was more on this thread!

So, Shauna, I take it that you have a verifiable example of wheat on a conveyor belt that is not listed in the ingredients. Please share it with us, by name, and include the evidence.

Actually, I wasn't trying to address that issue specifically. I was simply pointing out that wheat used during production would not necessarily have to be on an ingredient list, even though it should be on the label in a 'contains wheat' statement.

I honestly can't recall if I've ever found any companies that have used wheat on a conveyor belt specifically for a product on that belt (as opposed to shared lines with another product). None come to mind. Cornstarch is what I've usually found being used, if needed. It'd be an interesting project to do some calls to check out if that is pretty universal for products here in the States, though, so I'll likely do that and put what I find up here.

Most uses of wheat flour in molds that I've run across have been chips that were made in-house in restaurants.
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#750710 New And Seem To Be Super Sensitive

Posted by on 25 November 2011 - 01:01 PM

Wheat in wood?

It's not inside solid wood, no, but wheat can be used in pressed wood products, including some brands of plywood, which can be an issue for inhaled gluten if there is sawdust from it, or I would imagine might be a contact issue if one has an allergy that's severe enough and there are broken edges so contact with the inside is possible.

So sorry I don't have a list of manufacturers, though! To look at a specific brand, the MSDS (Manufacturers Safety Data Sheet) of the product used to be where I found the information. However, I've been looking recently to try and get more information, and it seems that this is more complicated than I had first realized.

The laws regarding MSDS's and what needs to be disclosed vary by state, so they can sometimes be incomplete, I'm told. Also, if a hazardous substance makes up less than 1% of the product, it does not have to be reported, which might be an issue with a sensitive enough allergy.

And the MSDS doesn't help us much when one is, say, visiting a friend's house and there are old plywood veneers in the house that were there before the homeowner bought it. No way to know what brand they are, anyway, yeah?

Solely based on MSDS rather than contacting companies, the trend seems to be heading away from wheat-based glue extenders (in addition to the formaldehyde glues). I have also seen information from companies here and there that they used to use wheat, but no longer do. However, considering that these woods products can be in our homes for years, there might be older products around that would be of concern.

There may also be an increase in the future in wheat straw being used itself instead of wood, for 'green' products. Particle board and particle board veneers are something I've found this in.

A couple examples:
This company used to use wheat as an extender in some products, and post-harvest wheat stalks in a particle board type product. They mention it in their FAQ, but no longer use it. (http://columbiaforestproducts.com/FAQ )

This is a wheat based plywood called 'biofiber' that is made from wheat straw (http://www.elements-...rd-Plywood.html ).
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#750540 New And Seem To Be Super Sensitive

Posted by on 24 November 2011 - 09:23 PM

Something that my allergist told me, and that I've managed to experience (unfortunately), is that if you have an allergic reaction, your body is basically 'primed' to have another one until your IgE levels drop down to normal, which can take a week or so. It can also set you up to have a more severe reaction when you might normally have a lesser one.

Wonder if things like eating wheat contaminated oats or cornmeal might make your sensitivity even worse, make you more prone to have a more severe reaction, you know? Don't know for sure, but it might.

I wonder if the amount of wheat I still seem to be exposed to will be enough for the test? Does it really matter?

It might, it might not. I had a blood test for allergies that tested positive for coffee (which i definitely react to), and my only exposure in the 6 months previous were 2 sips and inhaled coffee. They never did the prick test on me, in part because I was starting to have worse reactions to it when inhaled. I just thought, this allergen=bad, so there's no way I'm touching it. What more do I need to know?

But now? I'm going to go and get further allergy testing done with coffee, and for the same reason I'd suggest you might want to consider it. With your level of sensitivity, it's likely really important to find out what types of contact will make you react. Ingested, inhaled, contact with mucus membranes, contact with skin?

It might be possible that you have a worse reaction to contact with your mucus membranes. Or mainly inhaled. Or you could have low level reactions to skin contact that could be keeping your body constantly in a state of elevated IgE so you're on the verge of a more serious reaction constantly, you know? If it's mucus membranes vs. the digestive tract only, that would be good to know because your eyes could be an issue that the mask wouldn't be able to protect.

With how sensitive your body sounds like, if there IS a low level contact issue with the skin, you'd want to know if wheat in building materials like wood putty or plywood is a problem. Or drywall dust, or wheat in soaps/lotions/shampoos.

If you have a skin contact allergy to it, you may be getting a constant bombardment of small contacts with your allergen that could be causing you a lot of trouble. If you did look into it further, I'd search for an allergist who is knowledgeable about food allergies. Local allergy groups will often know of the allergists in town who seem to know what they're doing in that regard.
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#749513 Labeled gluten-free But Really Not

Posted by on 21 November 2011 - 11:38 AM

Oh so sorry you got sick on that!

I'm assuming you live in the USA, yes? One of the major issues here is that there is not yet regulation of gluten-free foods, so which ingredients can be used, and how often a product must be tested, if at all, are not standardized.

Another issue is that one of the tests to determine the concentration level of gluten, which some companies use, does a poor job of accurately detecting the barley gluten, specifically, so foods that have utilized barley or have barley derivatives may actually have above the 20 ppm of gluten that most companies aim for, due to the barley.

Re: the rice milk. The good news is, you may actually not be super-sensitive, although if you were having trouble with it, you likely do fall on the sensitive side. :) There are a number of celiacs who have had trouble with a rice milk that was processed with barley. A number of celiacs have also reported issues with Amy's products. And due to the lack of regulation in the USA at the moment, it's not unheard of to get other 'gluten free' foods that have over 20 ppm of gluten, or a few batches that are over 20 ppm, because the company isn't testing their product.

For this reason, a number of celiacs drop processed food for a the first few weeks-months of healing. They eat whole meat (not luncheon meats), fruits, and veggies. Sticking to certified gluten free grains like Lundberg rice. Avoiding nuts, dried fruits, and legumes that have been processed in a facility with wheat. We were just talking about sunmaid raisins here a few days ago, for example, and they seem to have a dedicated facility for just raisins. Then they slowly add back in a product, one every few days, or once a week, and see how they are feeling on it.

When we were in the same position as you are, I went to whole foods, and for my kids we ended up hunting down products that had stricter testing standards and lower gluten concentration standards.

These guys (http://www.gfco.org/ ) will certify products, and not only are the foods with this symbol on the box supposed to have less than 10 ppm of gluten, their processing, ingredient sourcing, and cross contamination prevention practices have all had to meet certain standards. They also do not allow derivatives of wheat, rye, regular oats, or barley to be used as ingredients or in the production of the food.

The website above also has a list of all companies that are certified by them, so you can more easily find them. :-)

CSA ( http://www.csaceliacs.info/index.jsp ) also certifies products and they will have the seal on their product. The products with this certification must be below 5 ppm, and there are certain standards and testing protocols they must follow as well. However, CSA certified products are not allow to use any oats, even gluten-free ones.

For both of these, the last time I checked, the testing isn't for every batch, but the frequency is based on the estimated safety of their sourcing and processing practices.

Another Two companies that have lower ppm standards, but aren't certified, are Pamela's brand mixes and cookies (every batch tested, must be below 5 ppm) and Ener-G (periodic testing, must be below 5 ppm).

If you see a gluten free product that is labeled as such, it's possible to find out if they test, but kind of a pain in the behind, so going with certified products can be easier at first (if more expensive). If you wish to contact companies yourself to determine which ones test, here's the questions I ask through email or a phone conversation.

1. Is your product gluten free? Sometimes, the answer to this is 'not any longer,' so it's worth checking, just in case.
2. Is your product made in a gluten free facility or gluten free line? This is not required for safe products for many celiacs, but it does let you at least estimate the level of risk, especially if a product is not being tested.
3. Is your product tested for gluten levels? If so, how frequently? And what is the allowed ppm level of gluten in your product? (or what is the ppm detection level of the tests used?)

The last question is one that I would get ALL the information on. It's been surprising how many company reps tell me that they test for gluten, but when they go to check on what ppm is allowed, find out that they don't test after all. :rolleyes: So the last question is, in some ways, really just a check to make sure they knew what they were talking about.
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#749389 The Most Annoying Thing About Celiac Is...

Posted by on 20 November 2011 - 11:19 PM

I ate boring food while everyone around me was able to enjoy a better meal, and I STILL got sick.

My child has to fight tooth and nail to keep her food safe, because the in-laws can't seem to understand cc and simply brush the gluten crumbs away from her food, insisting it'll be 'fine.' (...and they wonder why I won't let them babysit anymore :rolleyes: )

My kids are in pain and it's because I made the wrong decision about the safety of the food I allowed them to eat. :(
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#748727 What The Heck Got Me

Posted by on 18 November 2011 - 11:40 AM

Re: the sunmaid raisin - thanks for the information! I was wondering if they had a large enough volume to focus on raisins alone. Nice to know that they do. :-)

Re: the progresso - I'm guessing they've got the gluten-free label, then. Argh, so frustrating when major brands like that are left out of my gluten-free guide. It'd be nice to be able to get some of these for my dad that aren't the most expensive brands out there!

Re: McCormick. I was actually thinking more in terms of cross-contamination issues rather than hidden added gluten, you know? I haven't called the company myself, but according to others who have, McCormick does "run the blends that contain gluten on the same lines as their other products." (http://www.gfreefood...es-gluten-free/ - although this post is a year old, so it might not be accurate any longer) So that could be a potential issue, if one tends to react to food processed on shared lines.
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#748587 What Does Super Sensitive Mean?

Posted by on 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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#748582 What The Heck Got Me

Posted by on 17 November 2011 - 08:16 PM

I'd check the foods first, the cream of tartar last.

Sunmaid does focus on dried fruit, so it might be okay, but dried fruit very frequently is processed in facilities that process wheat - you'd have to contact them to see if it's a wheat free facility, though, as they don't have to state that.

The Dei Fratelli tomato soup contains wheat, so it might be worth checking to see if it is processed near the tomato sauce, possibly.

Did the progresso broth say gluten free on the package? I was looking these up in my little Cecelia's marketplace gluten-free guide, and it doesn't have Progresso chicken broth listed as gluten free. General Mills says that if a product is considered gluten free, they will put that information on the label.

The McCormick cream of tartar I think is usually good for many folks, but I believe it's made in the same facility as the spice mixtures that contain gluten. You'd wanna double check that, though. It's been a while since I last looked that up.
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#748281 What Does Super Sensitive Mean?

Posted by on 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. :-)


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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#748244 Fruit And Vegetables

Posted by on 16 November 2011 - 07:32 PM

Shauna, if you will take just one thought from me, it is this. Consider Lyme disease.

Appreciate the thought. :-) Due to my location, Lyme Disease rather unlikely, but as we all know, though, doesn't mean it's impossible. I'm curious if they tested for it in the last round of tests or not, when the docs were kind of grasping at straws.
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#748240 Fruit And Vegetables

Posted by on 16 November 2011 - 07:22 PM

For what it's worth...my husband, a chemist with 30+ years experience, thinks transfer ONTO the plant is more feasible than the plant taking it up through the roots.

He also suspects the jalapeno juice was somehow possibly tranferred to the tomatoes themselves (like by wind transfer ?? ) rather than actually absorbed into the soil and then absorbed by the roots of the plant. Steric hindrance would prevent a molecule that large from entering the roots of the plant.

He explained more about ionization, but it got complicated for me... :rolleyes:

ha, My hubby's a science geek too, and sometimes I'm sure I get that glazed stare when he starts getting too in depth for me, LOL.

The study I cited earlier did find evidence of full proteins making it intact into the roots, but it mentioned that the study was being performed in the first place because there was a lot of disagreement in the botany community about whether this was even possible, and they were trying to see whether it was or not.

However, the intact proteins didn't seem to survive much past the outer edges of the root vegetables, and the assumption is that some of the proteases (I think I've got the term right) were starting to break them down. How quickly they are broken down, and what level of 'pieces' could be found where after that point, is unknown. Probably pretty quickly, though. It also seemed dependent on species and on the presence of rootlets.

(as a total aside...If all the theories about absorption from poopy/fertilizer is correct, then why wouldn't we just spread chocolate and have everything taste so yummy? :) )

So, I haven't looked for research on this at ALL, but there's a lot of gardening/farming lore on things to add to the soil, or to leave out, because it supposedly affects the taste of the produce. I know a number of citrus growers (small farmers, not big operations) that add sugar to the soil and claim it makes their oranges sweeter. onions and garlic supposedly affect the flavor of some foods.

If it's true, I imagine only some substances would be uptaken by some plants, with a variety of effects from greener leaves to changes in flavor. Again, I haven't looked at this at all, but there's enough belief in it among gardeners that it seems worth checking out someday.

...although I'll tell you right now, if we could flavor things with chocolate, I would be planting chocolate bars throughout my yard! Mmmm, chocolate flavored rasberries!

Is it possible that you guys are just feeling ill from something else? Pesticides or other contaminants?

It's something I often wonder about, and I'm with Steph - I think it's possible. But just like her, following the gluten trail and avoiding it seems to work best for me, so for the moment, I'm focusing most on that.

That said, I definitely do have other issues and I actually think all this research into the food supply can really help identify some of those for people. For example, finding out all the chemicals and substances used for various fruits, I was able to make a connection between a pesticide and headaches I was experiencing. Kind of nice to get the pain to stop, once I knew what to look for.

Are your antibodies still high?? Is that how you know these foods are gluten-tainted ?

Before I was diagnosed, my thyroid numbers were getting steadily worse, my vitamin levels were okay (I overate a lot), I was overweight, and my antibody numbers were high, but not severely high. Lots of pain and vertigo and such.

After a couple weeks of massive gluten-free product binging, my diet that first gluten-free year had an oil and a salt as my most processed food that I ate regularly. I would try a gluten-free product every once in a while, I had a whole grain or two I ate, and I bought my produce from the grocery store. My entire house was gluten-free about 2 months into the diet, with new cutting boards and my own special pans that only I used. I might try to eat out once every month or two.

With that level of care, in my checkups over the first year, my antibody levels had dropped but were still above normal. My thyroid numbers were deteriorating steadily, and my vitamin levels were actually dropping rather than improving. My weight dropped drastically, so I went from overweight to mildly underweight within about 6 months. Lots of physical issues that just wouldn't go away, on top of this.

Almost a year after I started eating a 'super-sensitive' diet, getting produce from the farmer's market and that sort of thing, I had another set of checkups. My thyroid numbers are down to normal, my villi are healed up, my antibody levels are good, and my vitamin levels returned to normal, too, including vitamin D, which was the weirdest one as I don't eat anything with this, merely go outside to get enough sun (both with good and bad numbers). My weight stabilized, too.

Better yet was the pain and vertigo finally went away on the second diet, within about 4 weeks of starting it.

Gluten molecules penetrating into fruits and veggies that have skins that may have been touched at some point by a farm hand who ate a sandwich seems pretty incredible to me

I don't usually assume penetration for something like that, or even for a lot of these substances, actually, I just assume that I'm missing cleaning all of it OFF of the produce, you know? Often simply because the produce has crevices and areas that I can't clean off properly, or it's too soft to scrub.

And if a coating is put on after a fruit has been contaminated with gluten, for example, then I have to be able to scrub off the coating just to get to the gluten underneath, as opposed to a simple wash, you know?

If the fruit/veggie was hardy enough that I could scrub the crud out of it, and it was completely smooth, it would be a lot of work but I imagine most of it would be cleanable, especially if it was just something involving contact after full ripening.

Right now, I'm in the middle of trying to research what may or may not be absorbed when it comes to produce. Wish I was a faster researcher, LOL.

It's easy enough to find claims, but harder to track down more than that. According to some watch groups, for example, fruits and veggies without natural protective coatings (like peaches) are more likely to absorb pesticides below the skin and into the flesh. But finding actual hard fact about this, and the size of the molecules involved, and the mechanism involved...eh, that's taking a bit longer.

I'll be posting whatever I find here, when I finally get it all collected. :)
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#748216 Fruit And Vegetables

Posted by on 16 November 2011 - 06:09 PM

It was the other way around. The extremely supersensitive people who treated their Lyme disease were eventually able to eat gluten (and many other foods) again, once the Lyme was treated... I guess the main point is: hypersensitivity often seems to be caused by something other than celiac alone. It's worth investigating...

So basically, the hypersensitivity to gluten was present, but the body was influenced by other conditions that were also present, so once those other issues were resolved, the body's sensitivity levels dropped back to normal? For some, anyway. Is that right?

If I'm understanding that right, that is very, very interesting, considering I do have one other condition. If yeast overgrowth or other fungal issues might have a similar effect on some people, to heighten their sensitivity, that could be spot on for me. I contracted Valley Fever a few years back, a disease caused by a local fungus, and my immune system was so shot that it disseminated. The fungus escaped my lungs and infected the rest of my body, basically.

The only crummy part is that there's no cure for Valley Fever, so if this were the cause of my own super-sensitivity to gluten, there's no easy fix. But it would be, I dunno, comforting to know another piece of the puzzle to my own body, you know? Heck, maybe if I look at diets that might help inhibit fungal growth, perhaps it might affect my sensitivity level, for all I know. Wouldn't hurt to check, anyway!

Thanks for mentioning this. :-)
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#748210 Fruit And Vegetables

Posted by on 16 November 2011 - 05:46 PM

I must be doing things "right" so far. I had my check up today and my blood panels are great! :)

Oh congratulations, that's wonderful! I hope the rest of it resolves before too long, too.

I never really understood what a huge thing it was to be able to say 'it's getting better.' I mean, my own issues? They weren't that bad before going gluten-free. Compared to so many here, my own issues are puny, small potatoes kind of stuff. No major surgeries, or permanently damaged organs, no other auto-immune diseases (crossing fingers) or anything of that nature.

It's amazing to me the fortitude and sheer determination that many of the people here have exhibited just to regain a measure of good health. Freaking inspires me, honest to god.
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