Lillyth

I sent an email to Bard's asking why, if they are manufactured in CA, we can't get it here. Following is thier response:

Lillyth,

Thank you for your email. You will soon be able to get our beer in California, especially in the Bay Area. The reason for the delay is that we have not been in California before and the distributors needed to be convinced that our beer was the real thing. Therefore the first batch out of California went to other states. Now that they have been able to try the beer, they are lining up to distribute our beer. So our beer should be available shortly.

Cheers,

Kevin Seplowitz

President. Celiac.

YAAAAAAAAAAAAAAAAAAAAY!!!!!!!!

I get mine at Trader Joe's.

Wow. I can't believe no one's mentioned Niman Ranch yet...

Niman Ranch BABY!

They are the best. go to their website sometime when you are feeling particularly strong-stomached. Read up on all the things they DON'T allow at their farms - which makes one think these things MUST go on at other farms, or they wouldn't put them in their rule book. ***If you don't want to potentially be grossed out, please skip ahead to the next paragraph*** Things like, no feeding of human waste to the cattle. There's more too, but that's the one I remember most.

All thier meats are great, but I especially love their applewood smoked bacon.

L

You mentioned Woodchuck Draft Cider, is it Gluten Free? I have seen it but was not sure.

I have tried the New Grist it was the best gluten-free beer I have tried. Ramapo Honey Beer was too sweet and Bard's Tale was bad but that was when they were having all the problems with bottles exploding. I ordered the New Grist and Ramapo way to expensive.

Jean

Woodchuck is fine - I drink it all the time.

Woodchuck Dry is my fav - almost like beer...

BTW, I contacted Green's last year (almost to the day) to beg them to please ship me some (cost no object). They told me they couldn't do it, but to contact Wild Oats to request they start carrying it.

Sounds like they are making progress!

YAAAAAY!!!

Since we are talking about health then my opinion is to err onthe side of caution until its proven. but I cannot support a blanket statement that distilled grains are safe while we have so many unknowns especially whilst so many people do experience problems specifically with them.

AMEN!!!!

I react to Stoli. (Though I will admit it is less of a reaction than other vodkas). But then again, I also reacted to the "zero" trace in Sojo's Fish & Chips.

I happen to be a VERY sensitive individual. I know there are plenty of folks who have not reaction to distilled things.

I'm with you. The distilation process "should" remove the gluten - but if that is the case, how come I have an allergic reaction every time I have grain alcohol?

After I read the email I compsed to Sojo Foods to my sister, she suggested I create a template for everyone to use as needed, kinda like a fill in the blank thing.

As much as I would love to think I would actually complete that, honestly, I just never will. (I will really, really mean to though)...

Instead, what I am doing is posting the email I sent to them, and you all can copy, paste, and ammend as needed. (At least it will give you a base from which to start - I know first-hand how difficult and discouraging it can be to type up one of these leters while you are in the aftermath of a glutening -- hey, we should make a celiac horror movie, and call it "The Glutening" )...

Anyway, here's the letter:

Hello,

My name is Lillyth Keogh, and I am writing in reference to your Fish & Chips with Malt Vinegar and Sea Salt.

I have celiac disease, which means that I am allergic to gluten in any form. Your Fish & Chips claim they are gluten-fee. Please know that this is not the case. I ate the product last night, and after consuming two pieces of fish, promptly got sick. The culprit is the Malt vinegar. From Wikipedia: "Malt vinegar is made by malting barley, causing the starch in the grain to turn to maltose. An ale is then brewed from the maltose and allowed to turn into vinegar, which is then aged." Barley contains gluten.

I realize you may not know this information, so I am sharing it with you. As a person with celiac, I was excited at seeing the words "gluten-free" on the package, and, though I know that malt vinegar is not gluten-free, chose to trust your claim that it is gluten-free. I do know that the tests for gluten allow a certain amount of gluten to be present and still be considered "gluten free".

I want you to know that no matter what your tests say, your product does contain gluten. I know because I got sick from it. I know within ten minutes of consuming a product whether or not it contains gluten, and, sure enough, ten minutes into my consumption of your product, I got sick.

Please do one of two things:

1) Make the Fish & Chips without the malt vinegar and make certain that you purchase new equipment on which to make the new fish & chips so that the new gluten-free variety does not get cross contaminated by the malt vinegar that is on the equipment you now use to manufacture it.

2) Take the words "gluten-free" off the box. The words "wheat-free" may stay. There are lots of people who merely have a wheat, rather than gluten allergy who can still consume this product (which was very yummy by the way, and for someone who can tolerate barley gluten but not wheat gluten, your Fish & Chips would be a welcome treat, as most if not all Fish & Chips are battered with wheat).

And, finally, please contact all the stores who sell this product for you and ask them to do one of two things:

1) Send back (recall) all the boxes that contain the words "gluten-free"

2) Put a notice by them on the shelf that they are NOT gluten free.

I know you do not want your customers to get sick, as I did last night.

Please remedy this situation immediately, as I do not want anyone else to get sick - there is probably someone out there right now with celiac who is purchasing your product and I do not want any more celiacs to suffer from the devastating effects of gluten-consumption. Please keep me informed as to what steps you are taking. I look forward to sampling a truly gluten-free product from your company.

Thank you,

Lillyth Keogh

OMG!!!

I just got of the phone with Joe from Sojo Foods - he is SO awsome!

Despite the fact that according to the tests the Canadian Government conducted (that have a zero parts per million standard) the product contains no gluten, the company is altering their recipe from using malt vinegar to using regular vinegar.

He is also contacting all the stores that carry the product and letting them know one of the customers had a rection to that product.

I can't believe it! Even though I am the only person to notify them of a reaction, they are changing their recipe!!!!!!!

Do they not just ROCK?!?!?!?!?!

Hi there! I always freeze my bread with wax paper in between each slice...it's a bit more work in the beginning, but when it comes time to eat it...it's just as easy to pull out one slice or three! I usually do nuke mine about 10 seconds though, just to soften it a bit so that when I place it in the toaster, the middle isn't still frozen and the sides over-toasted. (This is when I use Whole-foods or Kinnikinnick brand). However, I'm sure if you made your own bread or found a loaf that isn't presliced, you could slice it thin enough that nuking isn't necessary at all. Good luck! -Julie

The way i toast mine is to do it slowly, on low, over and over again (anywhere from 5-7 times). The sides don't burn, the middle is perfect, and it feels like REAL bread, not toast, which I HATE with a passion.

As for separating the slices, I use one of those deli-spreaders, like you see them use at a deli to put on mustard and mayo. Just slip it in between the slices, and whamo! Single slices! (Plus, if you slip, you won't cut yourself like you would with a knife)...

I bought a box of Sojo FIsh & Chips at Whole Foods.

It says gluten free right on the box - TWICE!

Yet it says is contains malt viniger, which, I thought was NOT gluten-free.

Sure enough, 10 minutes later (now), I have that tell-tale headache right in the middle of my forehead, like a band is across it. A sure sign (for me) or being glutened.

Thoughts? Was that just a dumb thing for me to do, seeing "malt viniger" as an ingredient & buying it anyway, just because it said it was gluten-free? Am I just causing this reaction psychosomatically? Do I need to call them & let them know their product is NOT gluten free?

What's a girl to think/do?

Lil

Pardon my language, but I heard the same poop.

ONLY on the elbows, obviously eczema, only official dx being an internal biopsy...

doggone doctors.

My doc said (I don't have the results on the biopsy yet, though at this point, I am NOT hopeful) that the likelyhood of it being DH when on the arms (not elbows) is slim to none. What I want to know then, is what about all those pics of DH on poeple's ARMS I saw - NOT on the elbows, just the arms...

Uuuuuuurgh.

Frickin' doctors....

Maybe we're all mutants from another planet!

dude... you have NO idea how many times that thought has *seriously* crossed my mind.

maybe we can't digest gluten because it does not exist on our home planet...

i think from now on, instead of telling people i have celiac, i'll just tell them i am from another planet, and that my species cannot digest gluten

Oh, and be careful not to disturb the scab of the biopsy (if it's still scabbed) - i accidentially knocked mine off after taking a shower the other day. More work, more vit. e, and more time to heal.

doean't that seem to be the story of our lives?

Hi! I was diagnosed with Celiac about three months ago and have been eating gluten free since then. I had not considered myself to have dermatitis herp. but am becoming increasingly concerned/curious about the itching I have experienced since last fall. The itching started three or four months before I got diagnosed, and seems to be worse now, after being gluten free for three months. The strangest part is that I mostly notice it when I first wake up and right before I go to bed. Have investigated all other possibilities like detergent and I don't use any cosmetics to speak of....I primarily itch on my thighs and sometimes my neck and arms. Can this somehow be related to my celiac?

Thanks,

Krista

it might be - i noticed my "rash" (as yet to be dx'd DH - waiting on the biopsy results) itched more when I was "at rest".

beyond that, i don't quite know. maybe get it biopsied?

Thanks, Lil! My biopsy was in January, but it still looks like 2 huge, red bug-bites--they even itch like bug bites. Do you think it's too late for vitamin E to be effective for me?

I don't think it's too late, per se - the sooner you get the vit. e on, in my experience, obviously, the better - but no, i don't think it's too late. Just be rigorous. As often as you can put it on (though don't be obessive about it putting it on, like, 97 times a day).

I used vit. e on scars - it took a while to go away, but go away they have. When I put it on my hubby's face when he got smashed so bad he needed stiches (I wouldn't let him, I took care of it instead), he barely scared at all. (I can't see it at all unless it is a certain kind of light & I am looking for it).

I would say use it 2-3 times a day, and it should clear up. I had a bad burn on my arm, and it took about a year before it went away, but now i can't even see it.

Also, funny thing is, my biopsy site didn't itch the first 24 hours, but after that it did. It itched right up until I started the vit. e regimin. Litterally, less than 24 hours later, the itching stopped.

Maybe we celiacs lack vit. e due to malabsorbtion - or maybe I'm just a mutant...

Lil

Hi all!

Just wanted to share my biopsy-care with you all, since it seems to be working well.

First off, I cared for it the way the doc said to first, polysporin(sp) and a bandaid for the first 48 hours. (Changing every 24 hours).

My wound (or as I lovingly referred to it: "my hunka-hunka-missing-flesh") looked AWFUL for the first 48 hours.

I then started caring for it the way I have cared for every other major wound I have ever dealth with:

Wash hands thoroughly

using a steril cotton pad, clean wound with something antiseptic (lemon juice - caution, it HURTS, witch hazel, etc)

put a little vitamin E oil it - cover with band-aid.

After five days of this, my wound now looks like a small bug-bite. I am now leaving it uncovered, except for at night when I am repeating the above steps.

It worked well for me, and thought I would share...

Lil

(NOTE: I did not have a severe outbreak of DH when I did this, and don't know if that would make a difference in the effeciveness).

My insurance will pay for my biopsy, minus a $20 copay. Is it possible for you to get insurance? Is there a government progam that can help?

I am going in for the biopsy tomorrow. I'll let you know what's involved...

Hopefully no kinves...

During my bout with what I thinks is DH, but has been dx'd as exzema, I reacted to every single creme they gave me. It flared up with gluten & went away when I stopped eating gluten. Period. But it did take a few months. Now that I've finaly got the biopsy scheduled, it had dissappeared...

Go figure...

I have good news for you! Though there are knives involved, it didn't hurt at all! I should also mention that although they normally give you nocaine, I am DEATHLY allergic (as in in might die), so they couldn't give it to me. What they did do was inject me with some saline soultion -- IT DIDN'T HURT A BIT!!! NOT ONE BIT! (I am, BTW, one of thoese people who is very squemish about shots, and it was fine).

It's three hours later it still doesn't hurt. But then again, my rash (be it DH or not) is 99% gone, and I have heard others here report itching & pain afterwards. Maybe mine just wasn't so bad becuse the rash is mostly gone... Dunno...

My skin problems sounds a little different than everyone else but in a lot of ways the same. For starters, ever since I was born, I have had a million miniature "pimple" looking bumps ALL over my entire body. They NEVER disappear. Growing up the docs always said they thought it was eczema. One doc thought every single pore in my body was clogged (I don't know if I believe that one). The only time the bumps would give me problems was if I started to sweat, they would itch really bad and become red. It doesn't look like other pictures I've seen of eczema.

Now fast forward to adulthood......I have been gluten free for about 2.5 months (lots of contamination during that time too - I'm trying ). I notice that after I've eaten something with gluten, on my inner arm at the elbow, I get a bunch of red dots. They don't really itch much at all and they are only a little raised. I also break out like crazy on the face. There I get what looks like big pimples but they don't go away for a couple weeks and they hurt when popped. They are mostly filled with what looks like water. But they don't itch either. (I get them in my scalp some too.) And I get red bumps on my chest and belly. These look different than the bumps I've lived with my whole life but they don't really look much like blisters. I don't have insurance right now so I have to see how much a skin biopsy will cost but in the meantime, I thought I would check here and see if this sounds like DH. Can you get a flare up by eating gluten or is it only when you use lotions, etc?

I haven't officially been diagnosed with celiac so I thought this would be an easier way to tell. What do they do to take the biopsy? Knives involved?? eewww!

My insurance will pay for my biopsy, minus a $20 copay. Is it possible for you to get insurance? Is there a government progam that can help?

I am going in for the biopsy tomorrow. I'll let you know what's involved...

Hopefully no kinves...

During my bout with what I thinks is DH, but has been dx'd as exzema, I reacted to every single creme they gave me. It flared up with gluten & went away when I stopped eating gluten. Period. But it did take a few months. Now that I've finaly got the biopsy scheduled, it had dissappeared...

Go figure...

Hey everyone,

I know that I definitely am intolerant to wheat, but I haven't been tested for celiac yet, but I've noticed that I breakout sometimes when I have ingested wheat.

I usually get a bunch of red itchy spots, and they are usually on the elbows, inner arm, or lower leg (near the ankle).

I went to see a doctor a few times and it's always been diagnosed as eczema.

I know that I used to have eczema as a reaction to the differences in water when I travelled back and forth btwn the US and France.

Now I've noticed that the eczema shows up always about 2 weeks or more after I've eaten wheat.

I looked at some pictures online and while it's similar to my eczema, it's not exactly the same.

I wonder if I might have DH, but just a less severe case? For example, the eczema is very very concentrated over a small area, and I get several (about 10 at a time) of small red itchy bumps. The bumps are raised, and it's only red in the middle.

Although a few weeks ago (after I ate wheat) I noticed a new sort of skin reaction, it was very itchy but they were purple/red spots that were not at all raised, it looked kind of like I took a purple/red marker and drew in a bunch of weird spots. However, it went away within 2 days.

If anyone has any advice, I would be most grateful.

I've had similar reactions. I was "gluten-lite" for about 9 months, and developed this rash. I cut the gluten out, and, funny enough, the rash has almost dissappeared. I've got a biopsy scheduled for day after tomorrow - I'd sau get yours scheduled ASAP, not so far out there that is dissappears...

It MAY be DH, but without a biopsy, you don't really know. (In the words of my dermo, when asked how she knew it was exzema, not DH, she said [without a biopsy] she "[didn't know]"...

Lil

I have a biopsy Wednesday to check for DH. Other than eating gluten beofre (which I won't do), any tips?

Like what part of the rash should be tested for what? (I've seen on other posts how the middle of the rash should have a certain test, and those near it another).

Unfortuatly, the biopsy took so lnog to get that now the rash is 99% gone.

Fricken' doctors...

First off thank you to those who wrote back about my fist thread and there is no costco, whole foods, trader joes etc in a ten or twenty county radius. I went to my local teeny tiny co op and spent two hours scouring ingrediant lists but i am unsure whether all hydrogenated and hydrolized oils are out. It seems as if everything has them.

Is cool whip for instance safe? How about chocolate milk?

I know nothing about gluten content in hydorgentated oils one way or the other, but I have been told by my chiropractor (who is with me on the whole celiac thing - in his words "why do you want to back on gluten to get tested when you know it makes you sick" - also he saw a more than 100% turn around in my physical strength after one week off gluten) that hydrogenated oils increase the pain level in your body by 10%. If you have no pain, I would say a little every now & then is not that big a deal.

But if you have any kind of chronic pain (as I have) - DON'T DO IT!!!!

I have noticed myself an increase in pain when I consume them.

Just my two cents...

Lil

well i cant get any response from the company about it and i cant find anything on there website so i have tried to figure this out, anyone have a clue?? i really really wanna make something to eat i have not aten in about 12 hours now because i ran out of clean dishs and dont want to get cc

dude... dish soap?

i had no idea we needed to watch out for dish soap.

i have trader joe's brand. i don't know if it's okay, but based on the ingredient list it looks fine. i'll call tomorr if i have time & find out.

sorry you're having a rough time...

lil

I am fairly certain that the distillation process does remove all of the gluten.

The gluten molecule is too dense/large too survive the process.

People may be reacting to wheat fibers/strands/etc left in the alcohol, but the gluten is removed during that process.

In my experience, most people that I have met that have a problem with grain-based alcohols are those who are new to the disease, have multiple intolerances or highly reactive to wheat/grain.

Personally, I had problems with some distilled alcohol in the beginning, but now I have not had hardly any problems (love my Ketel One Vodka).

I was going to reply to my above post anyway because I realize that it was not clear, so I'll just do that here, as I had some questions about some of the things you wrote too.

First and foremost, I am not saying that no distillation process ever removes the gluten. What I AM saying is that according to my molecular biologist friend, SOME distillation processes MAY NOT remove all the gluten. It just depends on the process, as they vary from maker to maker.

Also, according to my friend, the higher quality the alcohol, the greater likelyhood that it IS gluten free, though, as with anything, we should always check.

My sister, who is also celiac, reacted to Sky Vodka, after consuming it. We thought that alcohol was safe, so we weren't even looking for a reaction. She just had one.

I have also had prblems with distilled things, and have no other food intollerances (other than nitrates, and that is a completely different kind of reaction - the reaction I get to alcohol is definitely a gluten reaction). But then again, I react to things made on equipment "shared with wheat". (Prior to noticing that on the label).

I don't understand why people who are new to the disease would react more than someone who was not "new". Could you explain that please?

Also, why would someone react to the whaet strands or fibers if all the gluten has been removed?

I'm not trying to be all psycho & "anti-distillation" here - this all started because I have had (and my sister has had) independent from one another reactions to distilled alcohols. So then I asked my friend, because it didn't make sense as to why, if this stuff is safe, we were reacting to it. I know that various people have different levels of reactions & sensitivity. Maybe I'm just really sensitive. Maybe there is something else I am reacting to.

Again, I am not in any way saying that no one should ingest distilled things. I am simply saying that it might not, as previously reported, be 100%, always safe.

Lil

It's a personal decision and if you react to it, don't ingest it, regardless of the cause.

As long as we're throwing out scientist connections, my husband is a chemical engineer, and those are the people that acutally work in the frontlines of the plants that make the alcohol. They design the plants and often help with formulations. After talking to him, and a number of other ChemE's, they that distillation *should* remove the gluten, because the gluten protein is too big for the process. If there's gluten in it, it's more likely that some of the mash was added back in AFTER the distillation process, and not from distillation itself.

Also keep in mind that most scientists will never make a definitive statement, and there is a lot of room for interpretation.

Bottom line - If it makes you sick, don't eat/drink/ingest it.

Fair enough.

I don't care if anyone chooses to drink stuff I react to, I just didn't want people thinking that distillation *always* removes gluten.

The *should* part is fine, since, as celiacs we know that when something says *should*, we need to excercise some caution. I was just concerned that based on what I was reading (and not just from you), my impression was that distillation always, 100% of the time, without question, removes ALL trace of gluten.

Since I found out otherwise, I just wanted to let people know it isn't 100%.

Lil

Why didn't the dermatologist do the skin biopsy? Isn't that what they're supposed to do? The dermatologist I saw did the biopsy (will get the result on June 5th..........five weeks is a long time to wait).

If the cream makes it worse, just don't use it. Try something else. Mind you, I find that sometimes nothing works, and I think I am going insane with the itching!

You're probably right that it isn't eczema, but DH. I am sorry that the cream made the itching worse. I am sure it was bad enough before the doctor tried to 'help' by prescribing it.

I stopped using the cream yesterday. After spending the day itching like crazy, I showered as soon as I could manage, and vowed never to put that crap on my arms again. (Interesting side note, I had this spot between my third and fourth toe on my left foot that was itching. I put the cream on that, and it worked like a charm! Why should I NOT be surprised?)

Funny, since going gluten free (after being gluten *lite* for nine months), the itching has calmed WAY down. It doesn't drive me nuts at all - if anything, it is *mildly* annoying at times. But twice now, the itching has increased to near maddening with both creams prescribed to me.

I think right now my biggest concern is *what if* the biopsy comes back negative. But I guess we will cross that bridge when we come it - IF we come to it...

Oh, and I don't know why the dermo didn't do the biopsy herself, except that it seemed to have something to do with the biopsies being done at another site. (I live in a major city & have Kaiser)...

Your arms, you say????!! THAT'S WHAT I'VE GOT, TOO!!!!!!! And the idiot dermatologist did a biopsy--which came back negative, as my GP had had me on prednisone for 10 days.

That was in January, and it's just come back, again on my arms. Do you have round,pink patches, about 2-3 inches across, and the same number on each arm? They're hot to the touch, and insanely itchy?

I'm trying to attack it with oral benadryl (which does help the itch somewhat) and topical anti-itch stuff. I'm also drinking as much as I can (I have this idea that I can somehow flush it out of my system and down the toilet), and being extra-careful about the gluten (I did cheat and have some real soy sauce last week, wonder if that was what did it...)

I was wondering if, somehow, my stupid immune system freaks out, and instead of givingme diarrhea when I've been glutened, makes me over-react to to things I never was allergic to before, like laundry detergent (and of course, we haven't changed a thing here that would have precipitated a topical dermatitis-type reaction).

What I can't figure out is, why is it just my ARMS?

If you find something that works, let me know, too, okay? Thanks!

Yes, on my arms! After reading your post, I wonder if they don't give us stuff to make it so the dx comes back negative...

As I said above, since cutting out the glten, it has been getting better slowly (VERY slowly), but surely.

The doc even went so far as to tell me that eczema is hereditary, and when I told her that no one in my family has EVER had eczema, she replied "well someone in your family must have it because YOU have it"

If I find something that works, I'll certainly let you know, though right now I would say use some of the crap I used for three days, then, when it tiches so bad you can't stand it anymore, scrub it off, and, compared to the itching on the cream, you won't even NOTICE the dh!!!!!

Before my official diagnosis of dh, my dermatologist gave me that same cream, although in ointment form. It helps with the flare ups. Luckily it was the dermatologist who did the biopsies without even telling me what he suspected it was. When the biopsies came back positive for dh, he explained about the gluten issues and set me up with a GI dr (useless) and a dietician (also fairly useless as I found this site before I could get in to see her.)

I have it in ointment form too. I called Kaiser tonight to let them know what was gong on - the person on the other line said, "funny, no one ever has a reaction with that cream"...

Where did he take the biopsies from, & what did he test for? (I find it best if I "watchdog" the whole process). If I know what he tested you for & where, I can at least try to duplicate the positive results. (Meaning that I can catch it if he tries to test for the thing NEAR the rash that is supposed to be IN the rash - I read someone else's post where her doc tested backwards)...

Thank you all for all your replies!!!!!

Lil

I am going to reference another thread here because I thought you might find t helpful.

Open Original Shared Link

Pay special attention to posts number 30 & 33.

After I read post # 30, I decided to do my own research into the alcohol distillation process via an expert (a molecular biologist specalizing in protiens - which is what gluten is, a protien). The molecular biologist in question is a friend of mine & would definitly tell me the truth, as getting me sick would have a very bad effect on his best friend's life. (His best friend is my husband, and when I am sick, I am too sick to work - if I don't work, we make less money).

Just thought you might like to know what he said...

Lil

Have you completely eliminated gluten from your system? All meds, toiletries and such confirmed gluten-free? Once I got off of it, the only time I had problems was when I was cross contaminated. Did you eat out? Use a toaster, old pan, wooden spoons or something from your pre-gluten-free life? I hope you are better soon.

Annette

WOODEN SPOONS?

Is there something I don't know about using wooden spoons? (I use them all the time - could they be contaminated?)