You're allergic to barley and you drank beer made of barley....
You're still allergic to barley.
This has been another simple answer to simple questions.
I personally, do not try to consume things that I know I am allergic to or have an auto immune reaction to, despite the assurances of the manufacturer that is will "be okay." But that's just little ole cynical me, who doesn't intend to die from one of those bad reactions.
Congrats you've probably saved a few more people from getting sick.
edited to add a review here, check out the comments
I am sorry you are having trouble finding restaurants that can handle a gluten free menu option, but this is probably going to vary in different parts of country and the world.
My husband voluntarily went gluten free at home after seeing how sick I could get when cross contaminated, without my asking him. We cook a lot at home, probably more than regular people, which ends up being healthier and the expense is balanced out by eating out a bit less. If we do eat out, I don't care if he eats gluten or not. We always take something with us, a little thermo box packed with gluten free snacks, when we go anywhere, so we have an option non dependent on regular food. As for socializing, same thing, I just eat beforehand, take what I need to get by, and he does his thing. If I would potluck I would just cook or bake something gluten free to take, get my serving out of it first so it doesn't get contaminated, and then serve it - most of the time people will just scarf it down anyway. Funniest thing I've done was go to a big gathering one time as the only person who brought home made gluten free whole grain/nut bread in a sea of corn chips, I even labeled it, and it was demolished pretty quickly anyway. "Oh, nut bread !" whoosh!
Don't forget you can always ask people to YOUR house to socialize.
As for the communion, I would speak to your religious pastor/priest/bishop and work something out, which varies according to the traditions of the specific church. This may involve either using a gluten free substitute bread or wafer host you can make or purchase, or just using wine or grape juice handled in a way that it does not get cross contaminated.
I was dying because of wheat pasta, bread, and pastry.
Going on eight years later, why risk going back to that because of a lack of adaptation ?
I've heard all sorts of commercial interests use that old canard about "real scientists," not knowing that many of us skeptics about food safety underwent some pretty vigorous "real scientist schooling" in our educational history. I've seen then repeatedly, on the behalf of GMO interests, sockpuppet other discussion boards and attack celiacs and gluten free people as being insincere, uneducated, and superstitious, when they are discussing the problems inherent when the profit motive overtakes the safety motive.
I'm not impressed.
I may be getting cross contaminated in spite of my efforts. With the growth in people with food allergies and intolerances, with no ready explanation, I want to see better food and pharma growing, storage, handling and preparation and manufacturing techniques, not worse.
One good thing about this is it can force you to expand your horizons and try new things. And there are a lot of restaurants now, compared to even a few years ago, which can offer something gluten free as an option. This is the one advantage of living on the West Coast, because there is so much ethnic cuisine and so much of it is good. As I have gotten better we have been exploring more and trying out new things - I use google searches a lot for gluten free restaurant options.
The first time I got brave enough to try gluten free chinese food off a gluten free menu, I and I didn't get sick afterwards I was pretty ecstatic. I figure this is a win - win situation, I'm helping to support others by ordering the stuff and keeping it on the menu, making it worthwhile for the restaurants, and the waitstaff is getting nice tips because it may be a little pricier. This is why we have all sorts of different restaurants to begin with- to have options for everybody.
Likely she was cross contaminated at the hospital, too.
If hospitalized in America, bring your own gluten free safe food, and don't let anyone feed you that hospital junk.
You are going to have to make a decision whether to keep a gluten free house and menu, or at least have a dedicated kitchen area for your daughter and any other relatives who might end up with the same diagnosis, since this tendency is hereditary. (my husband voluntarily went gluten free at home, which makes life much simpler here, but it is just for the two of us, and we both cook. it did not require much of a change at all for him, other than he switched brands of cereal and he now gets to eat more home baked goods, as the meals were pretty much the same, just gluten free. I keep a lot of gluten free flours around and grind my own nuts for almond meal. )
To avoid cross contamination, much of the cookware that your daughter needs to stay safe may have to be replaced and dedicated to gluten free cooking. This means the non stick surface teflon type pans, baking pans with baked on residue, silicone mats, rubber spatulas, wooden spoons, cutting boards, colanders, the toaster, tupperware that may have stored gluten items before, etc. Wash your potholders or get new ones if the current set are scummy with gluten.
Do buy a package of sharpie permanent markers and start marking up your new stuff as the "gluten-free" items.
Also, Paper Towels are Your Friends. You lay them down on any work surface and it's now clean.
For condiments, as ravenwoodglass has pointed out, you also need a duplicate gluten free set. That double dipping thing with people just using the same spoon or knife over and over again gets gluten all over the place. When I bake, if I'm spooning something out of a bag or container, I always use a fresh spoon for each storage container, just in case something in the line of ingredients is cross contaminated. I've had practice tracking down the one item in the chain that was ruining everything I baked, and this is how I ended up handling it. I've watched my husband spoon stuff out of a jar, like salsa or peanut butter, and rub it on something and then re - dip, without thinking, and all I can say is, I'm glad that everything here is now gluten free or one of us would be driving the other crazy.
At first this may seem overwhelming, but just do it in pieces. Like, prioritize, this stainless steel stuff is fine, this ceramic is fine, this has to go right now because we use it daily. I put myself on the New Baking Pan of the Week Plan and replaced some of them that way.
If you have indoor pets, you may also want to go to a gluten free food for them, especially if it's something that sleeps on the bed and grooms itself a lot, or drools. ( I ended up with two dogs with wheat allergies, same half breed from the pound, and the dogs were getting cross contaminated by the other pet food, when the other pets drank out of the same water dish, and it was easier to take them all off of it. My one dog's reactions exceed mine by a factor of 10. ) This way it's just one less source of gluten contamination to worry about, and you may end up with a healthier pet, anyway.
What she can do is go to the doctor's office. Be really nice. Tell the medical office people that according to law, they have to give her copies of all the test results. And they need to do this before she leaves the office. If they balk, she tells them she already contacted the insurance company and they don't like it when doctors run tests and then don't give out the results. Smile. How long will it take to make copies ? Smile.
If they ask why, tell them they need to do this before you are forced to contact the State's Attorney General's office. Smile. Because your new doc needs a copy. For his/her files.
Yes, you own your test results. You paid for it, thru your premiums. So they need to turn them loose.
I can't tell you anything, but at least then somebody else might be able to have a look - see at this. I could say, hmm, first degree relative, and having symptoms, gets relief if avoids the gluten, and now some sort of lesions, sounds like it's getting more and more likely, but I'm not a pro, just playing the really annoyed consumer on the internet with some experience at this.
We lost power for the greater part of the week in the winter several years ago (in northern CA) after a winter wind and rainstorm which snapped off the power poles like toothpicks a few miles down the road. It also knocked out power to many of the surrounding towns. You know how they say to have a radio to listen for information ? Well, the local radio stations are all automated playlists now, and there was nothing to listen to at all re this storm once it was over. The largest city to the south was completely ignoring any news of this area being under a power outage. A lot of the rural area of the state was in the same way. It was like the Twilight Zone.
I had partially prepared, (bottled water, did a lot of baking/cooking in advance) but tried driving north 30+ miles to the next city for a few more groceries at dusk, after it ended, and got the shock of my life when I found out what a city looks like in a blackout at night with some of the streets closed due to flooding, especially when I got stuck in traffic with people waiting to cross a major river bridge. I was very familiar with the area, so told myself to keep calm and visualize, and go slowly. Once finally over, creeping along in the dark, we all saw a glow in the distance - it was the only block in the area that still had power, and it was drawing people in cars and on foot, like a candle draws bugs outside. And I was lucky in that this was a store that is really good about having some gluten free stuff. The prepared food area is feeding people like a relief zone. The stockers were working the rapidly turning over staples on the shelves with what they had, and trying to aid people. The stockers and cashiers were also questioning everybody about where they lived and was the status was, because they in turn were getting asked all this and nobody actually knew anything. This way information was being shared. All they knew was that they were the only open block with power.
I ended up taking an interesting detour on the way back. At one point I stopped and used a flashlight to read the road signs, and it's really quiet in addition to being really, really pitch dark. This whole area is protected by river levees and the last thing I wanted to do was to blunder into some surprise. Driving back down the highway, there are no lights in the distance, so I'm counting miles on the odometer to see where I am. At one point again I have to go up over the exit ramps and then down, to get around flooding.
Guess what. Your cell phone service might not be that good in that situation, either. I finally made it home.
We were lucky in that we did have already, thanks to my insistence, a generator that we ended up setting up to run some appliances during the day, like the microwave, to cook with, and the well, for house water. (we had had the electrician wire the well so it was safe to do this) We had to heat the house with the fireplace, while it kept it above freezing, and in the fifties, long term, which was not really that comfortable. I miss my old woodstove in a past house. This house might see one yet.
We kept the refrigerator's contents out in the garage, to keep cool, in an ice chest.
After that, was when I started transitioning myself more to being able to tolerate prepared foods, because at the time I was mostly on just fruits, vegetables, nuts,and meat, and I was eating very low carb. The upside of low carb is that you can fast more easily than a person who needs a higher carbohydrate diet. I told myself to figure out what I could eat that could be packed away without refrigeration and carried with us easily if we had to evacuate. (I'm already used to packing food automatically for road trips... even my spouse can do this- ) I also keep more stuff stocked in the pantry. I'm pretty sure now that if push came to shove and there was only some kind of rice, and peanut butter and some cheese - all things that are readily available - I could go for a very long time on it. I know how to make a cup of coffee with just a candle. A can of Sterno or a backpacker's stove would do the same thing.
The other thing is, it certainly trains you to pay attention to the weather - not just the forecasts, but I have a lot of the geekier weather sites bookmarked so as to watch what's going on. It's not only us humans which are affected by bad weather, we and most of our neighbors have animals we need to take care of. Their food and water has to be supplied, also.
Having a minimum of supplies around, a flashlight, a camper's lantern that runs a long time on batteries, a sleeping bag, a case of bottled water, and some non perishable food items that could take you through a week without shopping, that require minimal preparation, is not a bad idea.
I am trying to think of something more annoying than when somebody says "watch this video" instead of describing what the video says, or providing a link with an actual transcript, and I can't.
Now the page is really downloading slowly, and still has no information in text, only look at the video. So I'm listening to another video from the same person on this gluten free society website. And it's downloading really slowly. What makes you think everybody here has a half hour to listen to this **** ?
This whole "gluten intolerance vs. Celiac" which is being portrayed as a completely different disease is such a bunch of ****.
"Town Center Wellness" in Sugar Land Texas and some chiropractor saying that corn causes gluten intolerance or triggers celiac disease.... rings a bell with me, this ****** ***** idiot was on Fox News last year, and the Fox story was saying all grains could cause celiac, and I remember writing up notes on it to debunk it, but I don't know if I wrote it up here or not.
Finally I have gotten to the part of the video audio recording where this guy says "there is no such thing as a gluten free grain." "Nobody's ever really thoroughly studied the other grains." "Creates additional inflammatory response in people with celiac disease." "Is it the corn itself or the celiac predisposition?" http://www.glutenfre...on-corn-gluten/
We have enough problems already with out this sort of blatant misrepresentation going on, as to what grain family actually triggers celiac and gluten intolerance.
Gluten as in celiac and gluten intolerance reactions refers to the triticum family of wheat, rye, and barley.
Gluten in international parlance means any protein part of grain.
All "Grains" don't cause auto immune disease for the majority of humans, and to imply so is false and misleading.
He's got a picture of corn plants with a skull and crossbones logo in the corner of the recording I'm watching. I wonder if he thinks that the Indigenous Native American populations of the New World were killing themselves off with said evil corn before Columbus got here.
I am looking at the forum now on that site and it looks like they re invented the SCD diet, which is grain free and uses nut meals, and tried calling it something else. Except now I am looking at their recipes and they are using other forms of starches, and they've got links to other pages with recipes using .... surprise ! things like quinoa. Last time I checked quinoa and buckwheat were at least seeds.
This is not to say that some people with gluten intolerance are not also rather carbohydrate intolerant in general, but again, a distinction must be made between the actual proteins of the wheat family causing an auto immune reaction, and this nonsense that corn causes gluten intolerance which is not like celiac.
If the pharmacist says "they can't help you" (and not the dweeble, clueless, sometimes nasty counter clerks) they may be breaking some sort of state law, and certainly their code of ethics which is akin to the physician's "first, do no harm. "
In this state they have to offer a consult with the pharmacist if the customer needs one. I have them flag the wheat, barley, and rye as an "allergy" in their records, just like the other things I am allergic to, and God Help Them if they try to give me any crap about "no way to check it" - that is their job. Just like they are supposed to check for drug allergies, interactions, etc. I would suggest you (and any one else here reading this who has had a chain pharmacy try to do the same thing) contact your state's Attorney General's office and ask where to file a complaint. If some dishonest S.O.B. tried telling me to purchase a drug and then take it home and check for allergens, I'd probably take out my cell phone and call the state's offices right there in front of them, and ask what I should do about the pharmaceutical fraud being committed. What a bunch of bleeping crooks.
You really have to get more assertive with these con artists or they'll keep stealing from you and your insurance, if they don't kill you first.
The last script I had filled they tried this crap and I made them open the package, which they were balking at, and get the name of the manufacturer which I had to call, and then got the run around to having to call the distributor - I ended up going home without it and having to do internet research on the ingredients and gluten free med lists because, of course, the manufacturer's hot line was closed for the day in another time zone. And I took the script to a different store the next day when I found out it was okay. B*******s.
The good news is that yes, some of your other conditions will improve, because you will get better and better at not being malnourished, which is contributing to all the other problems. What you are feeling now is not gluten but a good old fashioned allergy attack from getting injected with something that doesn't agree with you. I know that if I have to take benedryl/steroids the initial reaction I have for my body is usually "whoopee ! yeehaw !" because they knock down inflammation and free up my joints or allow me to breathe. Of course coming off the steroids, even for a short course, is such a miserable experience, plus the steroid side effects, sometimes it acts as a sort of un - motivator. ( I had massive poison oak 3 years ago and had to take a lot of both. )
I would not trust those duplicitous ***** b******s in the GM O business with "fixing" wheat for us, any farther than I could throw them.
Nasty, nasty blog interactions with the pro GM O crowd re sustainable agriculture and food safety, vs. Mon san toe. Aggressive and really just always on the attack. Always pretending they are trying to "feed the world" or "save mankind" or "help starving children in Africa," and then they ruthlessly go after the people who don't want GM O foods by saying they are not SCIENTISTS and only their precious selves are capable of making those scientific decisions. Trust me, they don't care if you're celiac, gluten intolerant, or get sick from eating wheat, they just want to make a profit off of everybody having to buy their GM O seed stocks.
If you can't tell, I am not fond of the Devil's lobbyists.
Story going around the net right now, about how the past administration in 2007 was recommending retaliation against European countries like France, who didn't want to import GM O grains from the USA.
My main concern is that they are doing research out of the country, and will cross contaminate the food grains we CAN eat with the wheat genes, and then the entire stock gets contaminated.
"Medical experts at the National Institutes of Health have declared urgency in dealing with celiac disease, the most common food-sensitive intestinal condition in humans, and require faster and more decisive methods such as transgenic breeding, in which genes are transferred from different species," said Dr. von Wettstein, a member of the National Academy of Sciences.
Dr. von Wettstein and his team have identified a fully viable, lysine-rich barley mutant that lacks the gliadin-type and low-molecular-weight glutenins that are currently shown to be exclusively responsible for dough elasticity and exceptional baking quality. Using genetic methods to remove the celiac-causing gliadins and low-molecular glutenins, Dr. von Wettstein's task is to produce a similar wheat grain while preserving wheat's baking qualities.
Dr. von Wettstein and his team have partnered with the Seattle-based biotechnology company Arcadia Biosciences to screen large populations of wheat, to be able to identify gene mutants that affect the celiac-triggering protein types.
Arcad ia works with Mon san toe, partners, same company.
DAVIS, Calif. (October 26, 2010) – Arcadia Biosciences, Inc., an agricultural technology company focused on developing technologies and products that benefit the environment and human health, and Advanta, a leading multinational seed company, today announced that the companies have reached a research and commercial development agreement for the development of Water Efficient sorghum. Under terms of the agreement, Advanta receives exclusive global rights to the use of Arcadia’s Water Efficiency technology in sorghum. Arcadia receives an upfront payment, milestone payments and a share of commercial sales revenue. This agreement builds upon the agreements the two companies reached in 2009 for the development of Nitrogen Use Efficient (NUE) and Salt Tolerant sorghum.
I know they were planning on doing "water efficient" rice research in China using other grains crossed into it.