Lillyth

Thank you!  I just made sure I can get email notifications, so if anyone has an questions about disc replacement, feel free too pm me!

Good luck!

Thank you.  And now, because of this thread, I am having the celiac conversation with folks over at my spinal forum!  I am going to see if I can figure out how to get the site to email me if someone needs me.  I'm not on here but want to be avaible in case someone needs me.

I haven't been on here in years, and I know this topic is very old, but I just wanted to bump it and mention the possibility of going overseas to get the discs fixed.  I am doing that this weekend.  I will be the first American to have six levels replaced in my spine all at once.

Don't suffer needlessly.

My theory is that the disc problems happened before our Dx of celiac.  I don't know that we can really reverse it, but we can get them replaced and get on with our lives.

Yet another port I can find NOTHING about.

Anyone ever been here? Or know anything even in general about Nicaragua?

Thanks!

Thanks to Larry, I now have ports 2 and three taken care of!

Now we come to more difficult territory. Guatemala. I recall once having Guatemalan food, but that was before, when I didn't know there were things I couldn't eat.

I would love any and all info on this particular city that anyone has, or even on Guatemalan food in general, since I don't know anything about it. I imagine the bulk of it is safe, but I'd love some more specific info than that...

Thanks guys!

Lilly

That is so great to know, Larry, thank you!

I will take your advice, and happily. I am very glad to know I will get a more authentic experience - I was worried I would be stuck with only high end resort type places - which, while I love such food, is hardly the *real* Mexico.

You just took care of two ports for me! Now for the other eight.

Hi everyone!

I am looking into going on an 18 day cruise from San Francisco through the Panama Canal to Ft. Lauderdale.

I will be asking intermitently about ports of call. I am trying to ascertain ahead of time if it will be worth it for me to go. Luckily I found a place in Cabo San Lucas (Sunset da Mona Lisa) that everyone seems to recommend, and has listed right on the menu what is edible by us!

Not it seems that is not the norm down there. I can't find anything in Acapulco.

Is there any place you guys can recommend in that city? Fancy or not, I don't care. Just as long as I can eat there.

I will be posting any other cities I am inquiring about separately.

Thank you in advance!

Lilly

P.S. Any experiences with Holland America?

mccanns irish oatmeal is one of those gluten free oats. they have instant packets but only come in three flavors, original, apple cinnamon, and maple and brown sugar. we have bought them and have had no problem

McCann's is NOT gluten free!

The following from their website:

Open Original Shared Link

Are McCann's Oat products gluten free?

All McCann

The pharmacist I spoke to says it's not. My doc says she spoke to a pharmacist who says it is, and an old post from 2005 says it's not.

Anyone know for sure?

Just in case anyone searches this in the future, it is a generic drug, so you need to contact the specific mfr. for exact info.

As of 9/24/07, Watson Pharma, who makes Kaiser's Nort., says they are not a gluten-free Pharma Co, which mean they do not certify the gluten-free status of their drugs. The most likely source for gluten is, however, starch. The starch in this drug comes from Maize (corn). They cannot, however, speak for any other ingredients in their drugs. They do not know the sources of all ingredients in their drugs.

You can take your chances if you wish, but I chose not to. Though I know the chances are low of getting glutened, I would have been taking this for a pain drug for abdominal pain, and the last thing I need right now is MORE abdominal pain

The pharmacist I spoke to says it's not. My doc says she spoke to a pharmacist who says it is, and an old post from 2005 says it's not.

Anyone know for sure?

I dont see too many people here with corn problems but hopefully someone has some advice about the thyroid meds??

Hi There Rachel!

I have to say this is really funny that the first post I read & respond to is yours, since you just told me to come here. Anyway...

I don't know about the corn, but are you hypo or hyper thyroid?

My doc to me I was hypo a few years back, and, being that we are both anti medication unless all else fails, he suggested I start eating red meat, because there is some thing in it (lysine? tyrosine? I forget) that helps with the regulation of your thyroid.

Do you eat meat? Red meat? That could maybe help.

I had been a vegitarian for four years before that, and damed if eating red meat didn't work for me. Course, this was pre-celiac dx, so it might have just been the elimination of so many fake meats containing vital wheat gluten...

I didn't read through the rest of the thread yet, so I don't know if anyone else mentioned this, but I thought I'd toss it out there because it is the only solution I could think of...

Ok here goes. I was dx as Celiac 10/01. Immediatly went on the diet and did well. No more cramping/diarrhea, etc. My IGG was 88. My IGA was 21. My pathology report doesnt say too much. My doctors said I have Celiac. THEN 05/03 my tests came back normal (on gluten-free diet). Then I switched dr's and she looked at my files and said that I dont have celiacs I have a wheat allergy. Therefore....my stubborn self eats gluten all the time. My 8mo dd has severe milk/soy and now suspected wheat allergy so when I spoke to her GI about her case I meantioned my wheat allergy and he was concerned for my health. Now he wants to see my chart. He is a sweet man! Anyway. Is it possible to have celiac and biopsy not be too bad...says villa is uniform and intact. I have a terrible habit of eating wheat and taking imodium since it is only an allergic reaction (I KNOW I AM CRAZY!) Thanks...I am so frustrated and worried that I have really hurt myself.

At the Stanford Celaic Conference yesterday I spoke with Dr. Peter (I think) Green. He is one of the MAJOR experts on Celiac. He told me that a Celiac who has been on a Gluten Free diet for a while may very well test negative for Celiac.

Also, when I went through the gammut of allergy tests a few months ago, I was very perplexed to find out I tested "negative" for wheat. When I aksed what that was about, my allergist told me that when they test for wheat allegergies, it does not test for celiac - they are two separate things!!!! A proper wheat allergy WILL KILL YOU - or at least send you into anaphalactic(sp) shock. So unless your throat closes up on you when you eat wheat, and you require an epi-pen for it, then it is NOT a proper wheat allergy.

According to my biopsy, I do not have celiac, bu then, I have been on a gluten-free diet for over six months. As Dr. Green said, a celiac who was on a gluten-free diet might very well have normal biopsy results.

One thing I learned from yesterday's conference is to seek out a Dr. who specializes in celiac disease.

Does anyone know the latest information on eating oats?

As a matter of fact - thanks to the Celiac Conferece yesterday, I do!

Oats do not, of themselves, contain gluten. But because of the ways in which they are grown, they are often contaminated with wheat.

There are two different mfrs. in the US that carry gluten-free oats. I don't know their names off the top of my head, but if you do a search for gluten-free oats on the web, I'm sure you can find them.

However - the docs from yesterday said that a small percentage of celiacs (I don't recall the exact percentage number) have a celiac-like reaction even to gluten free oats, and they don't know what causes it, or if it is related to the celiac disease.

Also, I don't know about the rinsing off of oats - at the conference yesterday, the preseters said more than once that getting the gluten wet is what activates it, so I would think that rinsing the oats would make it worse. But I don't know for sure.

I work at a seafood restuarant as a waitress and I often have people come in that have celiac disease and ask me what they can eat. I pretty much know all of the ingredients in salad dressings, sauces etc.

A few weeks ago, I told this mom (who's very young child has celiac disease) that the only dressings we have that are gluten-free are thousand island, italian, etc. She argues with me telling me that our ranch dressing is gluten-free. I was angry that she would fight with me. I told her that we use Hidden Valley that contains Modified food starch. She insisted it was made from corn and so I brought it to her anyways.

Later that night after I had clocked out, I decided to trust her and reunite with the best salad dressing of all time. I regretted it later.

I called the company to find out if Hidden Valley ranch is gluten-free. They said it is but it is produced in the same facility as things that do contain gluten so it may contain traces of gluten. That is enough to drive me away. I don't see a point in ever risking it when things "may contain traces."

But it made me wonder about this mom. Is she being responsible in the food that she is feeding her very small son? He can't advocate for himself and if she doesn't watch what he eats closely then who will?

I want to know what you all think. Do you risk it when it "may contain traces of" or "is produced in the same facility as"?

My two cents: No, the mother was NOT being responsible.

I have been in a facility, personally, that says they use dedicated equipment for wheat & corn. All the equipment is wood, which, as we know, retains gluten. When I was witnessing the milling process, wheat flour was EVERYWHERE!!!!! The mills were one foot apart. I had a hard time even being in the room. They actually advised me to keep a wet papertowel over my face to keep the wheat flour out of my mucous membranes (which I appreciated).

It made me thing though, that the wood equipment, which was one foot away from the mill, MUST be getting wheat flour on it - I was in the back of the room, and had problems.

That being said, I know of at least one facility that uses only stainless steel for all production. It IS a shared facility, but they DO clean everything in between processing, and NEVER process more than one product at a time.

So - in short, some facilities may be safe, while others are not.

I think it is either trial & error, or "russian roulette" every so often.

I don't have a hard & fast rule, sometimes I go one way, sometimes the other.

But I DO keep note of which mfrs are on my "safe" list, and which are on my "no-way-in-hell-not-ever-not-even-if-i-were-starving" list...

Also, does anyone know of any dill pickles that are gluten free?

Thanks!

Bubbies

All vinegar (except malt) is completely safe in the same way that distilled alcohol is completely safe (!!!). I think if you believe one you believe the other.

I'm not sure myself, and haven't tested distilled alcohol. For me I think there's something in common between wine and vinegar that troubles me. I've tried giving up the wine and that doesn't seem to benefit me much.

Yeast is my next target. Hey-ho. What fun.

I heard today that the distillation process is slightly different for vinegar vs. alcohol. Dunno if it's true or not.

Funny, for me, it seems to be something in common between distilled alcohol & vinegar - wine is okay for me.

If you don't mind my asking, what are your symptoms?

(Maybe we can find a common thread here)...

This would make me think that I ought to be able to drink the Aviation since nothing is added back after distillation, but it sure did make me bloat up like pig! This was after one small martini, so I don't think I just drank too much...

That is exactly how I feel! Everyone keeps telling me that, as a celiac, these things are safe - yet I always react to them precisely the way I do to gluten. For more see: http://www.glutenfreeforum.com/index.php?showtopic=23890

I'm so confused about this! I keep hearing that it is okay, yet I keep having reactions... And the fact that I am not *supposed* to makes it worse (emotionally).

I don't know, maybe it is a throwback to pre-knowledge of celaic - where things affected me in a way that they were not *supposed* to.

Maybe I'm just super sensitive & react where others don't, or maybe it's something else with the exact same symptoms...

If it's the latter, I need to figure it out ASAP. If it's the former, maybe I should get a job as a gluten-tester...

I went to the Stanford Celiac Conference today, and asked the folks there about the distillation process and how that works with alcohol made from grain.

I won't bore you all with the lengthy answer, but the long and short of it is that this debate may never be put to bed: the distillation process should remove all of the gluten, but depending on the process, it may not.

So how's that for a difinitive answer?

I will say in defense of all the people on the "other" side of the debate, Dr. Grey did say he had never had anyone report such symptoms.

I did have one of the other fellow conference goers suggest that perhaps it is a sensitivity to something else in the grain alcohol - does anyone know of anything else that might mimic the symptoms of celiac so exactly? If so, I'd be happy to look into that as a possible cause. After all, if there is something else out there causing the same stuff, I'd like to figure it out. The thing is my symptoms of a glutening are so steady and consistant, that that is the only thing I can come up with when I have the same exact same, to a tee, reactions when drinking distilled alcohol...

Now for the good news:

According to Ann Whelan, of Gluten Free Living - ALL VINIGARS (in the US) ARE ABSOLUTLY, POSSITIVELY, GLUTEN FREE!!!!! (With the possible exception of malt vinegar).

I know there was some concern during the "great alcohol distillation" debate as to whether or not we needed to worry about vinegar. Unless it is malt vinegar, all US vinegars are 100% SAFE!!!

Yay!!!!!!

Just thought you all might like to know...

Lil

Why do you think everyone should give up foods that disagree with you? If we only ate foods that nobody ever reacts to and contain no toxic substances whatever, none of us would have anything to eat.

I didn't see anywhere in his/her post that said everyone shoucl give up foods that do not agree with him/her.

Given that blue cheese started as a substance bourne from moldy rye bread, I don't see how this is anything but cautionary.

There are strains of blue that are consumable by celiacs (Outback Steakhouse, TJ's), but as a general rule, I think that blue cheese is something celiacs should steer clear from simply because of the nature of it (ie: that it was originally derived from moldy bread).

Your post just seemed a bit on the "attacking" side, so I thought I should say something...

I may have missed something in the thread, but just in case I didn't, I thought I should say something....

Lil

What it comes down to is if there is an element of risk ....should we take risk. It also comes down a little to belief, what do you want to believe and is that belief enough to overcome the fact many of us report reactions.

Are we perhaps making the symptoms up or denying we might have been glutened elsewhere.....

The strongest arguament you have already made and that is some of us definately do react or believe we do.

I will be going to the celiac conference at Stanford next month - I will be sure to bring this topic up, and see what the folks "in the frontlines" say.

As for reacting vs. believing you are reacting - is there really a difference? I mean sheesh - am I really having diarrhea, or do I just believe I am having diarrhea? Isn't the end result still diarrhea? Or a headache?

To quote (loosly) a passage from Catch 22:

Some guy whose name I cant recall to Yosarian: "He's not really in love - he just thinks he is"

Yosarian: "What's the difference?

"All gin is flavored." Well, yes it is. The flavoring, principally juniper, is added to the mash prior to distillation. The resulting distilled spirit is safe, as is any distilled spirit to which nothing has been added after distillation.

Some people react to grain alcohol, and may need to avoid gin for that reason. The subject of distilled spirits has been debated on this board at considerable length, and I don't mean to restart that discussion.

I, personally react to Gin. (And all other distilled grain alcohols).

Again, not to restart the distilled-alcohol-safe-or-not debate, my advice would be to have a glass (or should I say a Gin drink), but only one, moniter yourslef to see if you react. If you do, don't drink it anymore. If you don't react - GREAT!

FYI, my molecular biologist friend says that with distilled alcohols, the more expensive, the greater chance you won't react, so I'd say go for the top-shelf stuff.

Hope this info helps.

Lil

Does anyone know if Frenet Branca is gluten-free? I emailed them and haven't gotten a response yet.

If anyone knows, I'd appreciate a response ASAP, as I am going out tonight. All my friends drink it, and I like to give it a try, but not at the expense of my health.

TYIA,

Lil

Hi folks!

I'm new here, this is my first post! I'll also add I'm extremely new to celiac/gluten free. My son has autism, and I have to say if I had not started researching some of the biomedical aspects of autism, I would have never figured out our gluten intolerances! Anyway, I have been searching around the forum for a day or two and have founds TONS of great recipes and ideas! Thanks! However, I have not ran across any salad dressing recipes or tangy BBQ sauce recipes. I realize I have probably not dug far enough or looked in the right spots, but would love if someone could clue me into a few. My son and I are/were addicted to Carolina Treat BBQ sauce (I think its a NC sauce), and it is a spicy type of sauce. All I have ran across in other places are sweet style sauces. Any advice is greatly appreciated!

Wendy in NC

Annie's makes a great Chipotle BBQ sauce (gluten-free). it's super spicy. Too spicy even for me (and that's saying something!) I usually buy the Chipotle BBQ sauce, and either their regular or Honey Maple and mix them together.

I don't know what stores are near you, but here is a link to Whole Foods locations in NC Open Original Shared Link

I get my Annie's BBQ sauce there. If your local Whole Foods doesn't have it, you could request it. If you don't live near a Whole Foods, try asking your local health foods store to carry it.

Lil

P.S. Welcome to the board Wendy! Good for you for figuring out the Autisim/Gluten Intollerance link - you're a good mom!

From a few months ago.

Not that I imagine you were all sitting around on pins & needles waiting for MY biopsy results, but I thought it might add to the whole celiac *drama* that seems to be DH biopsy tests.

They came back "inconclusive". All they could tell me is that at some point, my skin had been itchey, inflamed and irritated.

DUH!!!

Like I needed them to hack a chunk out of my skin to tell me that...

Anyway, just thought I'd share...

Lil

Lizzy- You should call them (and anyone else who has had a reaction to their products). They need to know so they can look into it. I probably won't be buying anymore Amy's Kitchen either, mostly because I think I am only going to buy anything processed only from places that are dedicated facilities, but you should let them know. as far as I know, my call was the first they'd heard of it. B

Both my sister and I (separately and without taling to one another about it for weeks) have been glutened by Amy's.

I guess this teaches me to call right away every time now.

When I called Sojo Foods about a glutening, they fixed their very next batch, and also said that my call was the first they had gotten. (Funny then that I have been glutened by Amy's twice, and never called. I emailed my celiac yahoo group about it, but never called to tell them that their gluten-free Mac & Cheeze - isn't).

I am also one of those micro-sensitive individuals. The USDA standards for gluten in 20 ppm. The Canadian standard is 0. (Which I reacted to on the Sojo Foods product, despite the test coming back 0 - it had malt viniger in it, so I don't know how that works)...

My gluten reaction is immediate and reliable. Ten minutes (almost to the second) after consumption, I get a headache, my left shoulder pain (I was in an auto accident & have ruptured discs) DOUBLES, and I get really sleepy. Every time. Like clockwork.

The upside to my reaction is that I ALWAYS know where the gluten came from.

I for one, commit to calling the mfrs of gluten-free foods every time I get glutened from here on out.

Any one else game, too?

Lil