Aly1

My mascara isn't waterproof but really doesn't wash off with just water - leaves me with raccoon eyes! Who knows, maybe the irritation I've experienced is due to the removers I've used containing gluten. I will do some searching for a gluten-free one and see how it goes...

Wow there's so much to learn on this forum. I had no idea there was hidden corn everywhere! This makes me rethink things a lot - I regularly find myself with a runny nose at dinner and can't figure out where it might have come from (that's a typical corn reaction for me, as are joint pains). Great posts.

Interesting the timing of your post, I literally just read an old post that touched on exactly this. Go to and scroll down to Evangeline's post. It was an eye opener for me (I have corn issues too).

Hi Jen Z,

Your mention of the cold symptom is interesting and I'm curious to see if others write in about it. I've had pretty severe neuro issues for about a decade (have only been gluten-free for 3 months). Numerous times I'd have icy feet that I just could not warm up without a heating pad. The past two weeks I was glutened badly and I've been horribly cold; the other day I was wearing 2 long sleeve shirts, long underwear bottoms, jeans and was under 3 blankets and could Not get warm. When I checked our indoor thermometer it was 70 degrees! So although I've never read that anyone else has this particular reaction, it seems it's one of mine!

It waxes and wanes but at its worst I can barely focus on reading a sentence and can't remember what happened an hour ago. It's just awful.

Thanks for the comment. I am still feeling glutened so I will take that advice. In truth, that eye makeup remover has always irritated my eyes just a bit but after dealing with transitioning to gluten free I just didn't want to deal with it. I guess I need to!

That was supposed to say BEING glutened. On an iPhone here...

Please do call the corporate office, or better yet, write a good letter and Cc all the relevant parties. This is simply a case of people not understanding the ramifications. You will be saving many people from sing glutened needlessly!

I have been gluten-free since September (well, I am trying to be but keep getting glutened, sigh) and have done a little research on this topic. Mostly I've read that it's a good idea to have gluten-free personal care products but generally since they aren't ingested the likelihood of getting glutened is slim.

I'm just wondering if anyone has actually had problems this way? I just discovered that my nice, natural eye makeup remover that I searched so hard to find (am sensitive to everything) contains wheat germ oil. Wondering if mucous membranes like the eyes are more likely to cause a problem. So annoying, we really are living in a gluten-filled world!

I seem to be having such trouble figuring out what I can eat that won't cause reactions. The gluten one is clear but it's also clear that there are other things at play. I've already removed dairy, eggs, corn and sugar/sweeteners from my diet and again this week, I seem to be reacting to almonds, another thing to add to the list.

I would really like to get food sensitivity testing done to make things clear NOW, not having to go through all these constant challenges (and failures!). But I have no insurance... I am wondering if anyone has even a vague idea what it might cost me if I paid for it myself. I'm in NY...

Is he taking any high quality gluten-free supplements? That's pretty standard with a celiac diagnosis, to help the body heal. I would definitely being doing that in the least.

Although celiac has been a known disease for quite a long time, it was considered a rare one until relatively recently. I think at this point in time patients have to read read read and educate themselves about the condition - we are not at the point where patients can just rely on their docs for guidance like they might with something like diabetes.

It's even worse if you are gluten intolerant and not celiac - it's only been a little over two years that the EXPERTS acknowledged that this condition is genuine...

Great, thanks!

I'll start by saying that I am new to being gluten-free so I don't know yet how sensitive I am compared to average. But re the above posts on vodka: I cannot tolerate vodka no matter how many times they distill it. For the past 5 years I thought I just couldn't tolerate alcohol anymore(note, I was always a vodka girl for other dietary reasons I won't bore you with) and avoided it like the plague; I'd get 3 day hangovers and it just wasn't worth it. I went gluten-free 3 months ago and then read some interesting articles that put me on to the potato vodka vs regular/grain vodka. I know they say that distilling supposedly makes it okay but I say no way. A couple of weeks I dared to try the potato vodka, and I was worried about the effect it would have the next day (I have a two year old to chase around and couldn't afford to be ill) - but it was amazing, I had no ill effects whatsoever.

So. This post assumes you are a vodka drinker - if so I recommend limiting yourself to the potato until you are gluten free a while and can do a challenge with regular vodka. Don't assume that distilled alcohol will do the trick, it sure doesn't with me.

I have no idea what my B12 levels are and since I currently do not have medical insurance I am not going to find out any time soon! But - I have a lot of neuro symptoms in my feet and would like to try sublingual B12 as some on here have suggested.

Can you please recommend a brand? And how much would people suggest I try starting out? If it makes any difference, I have tested negative for celiac but react strongly to gluten.

Thanks very much. I think this forum is just awesome and provides so much support and info to someone just starting out.

I did a quick search, both the forum (default search) and then articles only, but after looking at a few I gave up. I did find this forum thread where mushroom said:

Maybe that'll help?Just in case, I searched for 'strong reaction gluten free'

Phooey, no that's not the one but thanks for trying! It was some type of "official article" that had a paragraph that described the phenomenon. I've read so many great ones here on the site, I have no idea which one it was...

Not sure if this is the best place to post this. I am looking for an article that I read here on Celiac.com, which described why gluten reactions are so much worse once you've been "clean" for awhile. It wasn't the whole point of the article, it was just mentioned within. Does anyone know what I'm talking about??

I am trying to teach my family about this but they are not understanding why gluten "supposedly" effects me in so much more obvious a way now that I'm living gluten-free. I'd like to provide them with this info. Hope someone here can help! Thanks.

i take a gluten free vitamin everyday. also i don't know if one of the products i work with are doing it, it could be and I've thought of that, but for the most part have ignored it. there's a bunch of different powders we work with, such as dry mixed tocopherols, caffeine, potassium citrate, citric acid, maltodextrin, taurine, niacinamide, there's many more but i'd need to get a list.

I hate to say it but it really may just be the environment you're working in. I think that is a highly likely scenario. Is there any way to find out definitively if gluten-containing products are processed there? I would try to do some research. You don't want to be in a position where you are going to fail at something that is important to you and where you would fail in front of your family and friends too. Find out about the ingredients you are being exposed to. If gluten cross-contamination is the issue, you will not heal there and you will continue to make mistakes and suffer from brain fog. And there won't be anything you can do about it but be proactive and leave. I know you don't want that to be the case, but SOMETHING is causing the brain fog. If it's your work environment, then you've got to go before you ruin your own reputation and self-respect.

In either case, remember - it's not your fault. It is what it is, and maybe you will have to go out into the world and create a different, new path than the one your family has. One where you can be healthy, clear-headed and PROUD. (Maybe working at a certified, gluten-free facility!)

Don't give up, find out what is causing this and then take whatever action is necessary. Good luck!

I had not even thought of the health insurance angle when I got tested. I am out of work and have no insurance - this is the first time I've been glad my test was negative despite my symptoms!

I wanted to give you a +1 instead hit the - sign. Sorry!

Thanks for telling me, otherwise I'd get a complex wondering why

I had some trouble with Vitamin Shoppe Vitmains. I can't be sure it was a gluten problem since I have other allergies/intolereneces. However, at the time I was taking them they only said wheat free, they did not say gluten free. You may want to double check your vitamins and write to Vitamin Shoppe to clarify whether they test for gluten or not. BTW, I have since found vitamins by Country Life that I can safely take. They are certified gluten free by www.gfco.org/

Thank you, I think I will just switch to Country Life then. I trust your opinion as someone avoiding gluten, than I do someone trying to sell me something .

I think you should definitely try going gluten free - this will be a relatively fast way to find out one way or another how it effects you. Go off gluten - and I mean REALLY GO OFF GLUTEN (you can't cheat, if you do you are wasting your time) for at least a month - then do what we call a "gluten challenge" - and see how it effects you. If you have Celiac or gluten sensitivity it will likely make you feel AWFUL. That was my experience and it seems to be a common one. Once your system clears it all out, it reacts strongly to it when it's introduced.

This is the easiest way to get an answer. That's not to say it's EASY per se, but it may make you feel soooo much better. I had CFS for years and have finally tied my symptoms to gluten. Please give it a try.

I am trying to narrow down what's affecting me and am going through everything I haven't changed. The supplements I'm using are from Vitamin Shoppe and say gluten and wheat free, but I am not sure about cc issues. I thought I would ask here and see if anyone has problems with them or if they're fine.

Thanks!

You've really got me thinking about my protein needs in general; I have been in a wheelchair the past 5 years and am trying to get out of it - building and maintaining muscle mass is critical for me, and of course losing weight means I am losing muscle (there's no fat left at this point). So I will stop worrying about not eating too much protein and try to figure out how to fit it in all day long. Which is what everyone here has been saying, but it all just clicked with eatmeat4good's post.

It's interesting that a couple of you said that you also werent wild about meat but were able to slowly increase up to a point where you actually want more. I've already increased my intake quite a bit this past year so I think I can see that happening for me also... Will check out the paleo diet and see what it's about. Thank you

P.s. If you really want something akin to cereal, you can try mixed nuts with coconut milk and raspberries on top in the mornings.

Ooh, this sounds like a tasty idea, I'm going to do it!