"Super Sensitive" Celiacs.....

[Jestgar]

  raisin said:

Makeup is a constant topic among celiacs in general.. But I have yet to across a thread just about no-CC makeup.

Does anyone know of a brand with any line of any type of makeup that is safe?

(I am especially interested in eyeliner and base/cover up)

The only one I know so far: Softlips brand is 100% gluten-free ,and now makes colored lip tones with a light scent.

oh honey, let me help you out...

https://www.celiac.com/gluten-free/index.php?showtopic=41099

[JRock]

First off - do NOT eat McD's fries! When I first started my gluten free diet in Oct 08, I read that they were safe. Check out the website: Open Original Shared Link. Here are the first two ingredients in their fries: Potatoes, vegetable oil (canola oil, hydrogenated soybean oil, natural beef flavor [wheat and milk derivatives]*). I was ill for two weeks because I ate their fries a couple times during that timeframe. And when I saw that on the website I was furious. The same goes for their hash browns.

Off that topic, I am also a super-sensitive celiac - I've eliminated gluten from my diet, have stopped eating out, and maintain a gluten-free home. I think I'm having problems with dairy, so as of today, I'm eliminating that. I just feel so miserable - I can pretty much guarantee D every day and pain in my abdomen. I have vicodin for pain, but I only take those when it's unbearable (when I've been glutened) - for this pain I've been taking donnatol. Has anyone had a good experience with it? I think it helps, but I still go through the day in pain - a smaller amount, but still pain. I don't eat much soy, so I don't think it's a problem. We'll see... this elimination diet stuff is no fun.

Jen

[GFinDC]

I don't eat the MCD fries either. Thanks for the info on them Jeniba. They sure do list wheat as an ingredient. Vicodin eh, like Dr. House on the tube? I don't take anything except enteric aspirin and potato vodka or tequila myself. Clean living ya' know. Oh, I do take DPP-4 if I have been glutened though.

Back on the oats. I got my CSA newsletter this week and it has an article about oats and celiac. Basically it says the jury is still out on oats. What surprised me is they had a chart showing up to 25% of celiacs may have a reaction to oats. That is a higher number than I expected.

[num1habsfan]

Uh oh...something I ate today (that usually satisfy ALL diets) might have glutened me? and its something that has always, always been safe?? Starting since this afternoon I've been feeling some insane pains in the typical glutening area...ahhhh!

[lizard00]

  num1habsfan said:

Uh oh...something I ate today (that usually satisfy ALL diets) might have glutened me? and its something that has always, always been safe?? Starting since this afternoon I've been feeling some insane pains in the typical glutening area...ahhhh!

I'm really sorry to hear that

I hope you can figure out what it is for future reference, and I hope you feel better soon!

[mastiffmommy]

I'm pretty newly diagnosed and just keep getting more sensitive (or just healthier so I notice faster). Case and point, when first diagnosed I almost lived off of this trail mix stuff until I started getting more rice pastas etc. Well, a week ago I ate a handful and oh - not good! Read the label and while no wheat in it it does share a machine.

I asked my Dr. I don't understand how something so small/trace amounts can make you so sick...and he asked me when the last time I saw a virus was?! LOL I love my Dr.

[pookie91260]

I am newly celica, only a couple of months. I am lactose intolerant, always have been. I react badly to any meat except chicken. even the lean cuts. i tolerate salad, fresh vegetables and fruit. i eats lots of Rice chex and thats about it for now. (I also enjoy a baked sweet potato) for a treat I have frozen yogurt. I have discovered different breads at Gillian's foods. they are the best I ever tried. gilliansfoods.com I have also had a lot of trouble with cross contamination. i never thought I would need to clean my toaster before using it. or the microwave for that matter.

[Mike M]

  GFinDC said:

Back on the oats. I got my CSA newsletter this week and it has an article about oats and celiac. Basically it says the jury is still out on oats. What surprised me is they had a chart showing up to 25% of celiacs may have a reaction to oats. That is a higher number than I expected.

Oats are just totally not an option for me-certified or not. Through more testing, it was discovered that I have ASE-avenin sensitive enteropathy with a cross over reaction to gluten/gliadin . I cringe when I hear how the industry is pushing oats as a safe alternative for those with celiac. I do realize it is to each his/her own as far as making a decision to eat oats or not, having said this (and this is just my opinion) long term consumption of oats will prove disastrous. I eat cream of buckwheat and this does the job for me as far as a really good and safe alternate to oats. All the best, Mike

[rumbles]

Num1habsfan, you're not alone, - I'm in the same boat. It's been soooo

long since my last glutening, that I didn't recognize the symptoms and

thought I had a sci-fi version of the flu, until the blisters showed up.

It's pretty bad when you have a gluten free house, and can't trust the

food in it.

[num1habsfan]

  lizard00 said:

I'm really sorry to hear that

I hope you can figure out what it is for future reference, and I hope you feel better soon!

Thanks, I'm still a little achy there today, so it must be a slight glutening for sure. I think I may try eat another one of them today, and see if my pains get worse. Then I know it was just one with slight contamination, or I suddenly can't tolerate any of them

Right when I'm busy studying for a quiz...what perfect timing for brainfog, huh?

rumbles, you're right: that's exactly what's the worst. Now that I do live on my own and got away from the retard of a roomate who tried to gluten me, I am in 100% gluten-free apartment except for a few things in my fridge/freezer that are there in case my parents stay over... just a loaf of bread, a container of butter, and a few cans of beer.... I've noticed my DH was really, really itchy last night, even on my foot!

[rumbles]

I found my culprit, - but I'm having a hard time accepting this one.

I was feeling great today, had my bounce back and was ready to

conquer the world. Then tonight, I had some packaged, sliced apples,

- the same kind that I was eating earlier this week, and within minutes,

I was back doubled over in pain, reacting all over again. Round two. I

just am having a hard time believing that sliced apples have gluten on

them, - but they're the only thing that I've eaten since this morning,

and there's no doubt that this is my typical gluten reaction.

[num1habsfan]

It never fails to amaze any of us what gluten is hidden in!! Always gives people a look of shock on their faces when we say what we have to avoid...

Ahh I'm going nuts. This recent glutening has moved into the severe pain phase. I have to wake up in 5 1/2 hours (cannot miss this class) but I'm sitting up because my side...OW!!

[Sailing Girl]

This might be better placed in the "Products" section, but I'm really only looking for super-sensitive Celiac feedback .

Have any of you reacted to San-J wheat/gluten free soy sauce? I'm having what feels like a mild gluten reaction, and the only possible culprit is that sauce (everything else completely unprocessed). The reaction brings to mind a couple of other times when I've *thought* I might be reacting to something, but the reaction was so mild I wasn't sure I wasn't imagining it -- and again, the only possible culprit in those cases was the San-J soy sauce.

This time I really poured it on (was making Thai Basil Chicken -- yum!), and there's no doubt I'm reacting, albeit mildly.

I thought it might be the soy, but I eat lots of edamame and never react to that. So could it be the San-J? Goodness, I'd hate to have to start making my soy sauce from scratch (of course, I'm making everything else from scratch ...)!

[dilettantesteph]

I wonder if the apples had wheat on them from that gluten containing produce coating to improve shelf life that we have been hearing about.

The problem with the soy sauce is that you can't even test it for gluten. That home test gives false negatives for soy sauce. I have been using the Eden Organic Tamari soy sauce without trouble.

[lizard00]

rumbles,

Another thing I thought of with the apples, maybe you are reacting to a preservative in the apples. When you buy them cut up like that, they have a preservative on them to keep them from turning brown. I find that I can't eat those, and if I eat an apple w/the skin on, I can only eat organic apples. Otherwise, they give me horrible stomach pains.

[flourgirl]

Ok, I did it. While traveling this weekend we stopped at McDonalds. I decided to try hubbys fries...just a few. Had a total meltdown yesterday and am ill today. I know it was the fries, everything else I ate was fine. After the first couple...which tasted wonderful, the next couple I thought....these aren't so great, I'm not missing anything. Wish I never tried them

[rinne]

  rumbles said:

....Then tonight, I had some packaged, sliced apples,

- the same kind that I was eating earlier this week, and within minutes,

I was back doubled over in pain, reacting all over again. Round two. I

just am having a hard time believing that sliced apples have gluten on

them, - but they're the only thing that I've eaten since this morning,

and there's no doubt that this is my typical gluten reaction.

Sorry to hear that.

While cross contamination may be an issue I am wondering if it is the preservatives they use in the apples. Were they the only thing you ate yesterday? When you ate them earlier in the week, did you eat them on an empty stomach? Did you eat as many? Just curious, please don't feel you must answer.

[mastiffmommy]

  flourgirl said:

Ok, I did it. While traveling this weekend we stopped at McDonalds. I decided to try hubbys fries...just a few. Had a total meltdown yesterday and am ill today. I know it was the fries, everything else I ate was fine. After the first couple...which tasted wonderful, the next couple I thought....these aren't so great, I'm not missing anything. Wish I never tried them

McDonanld's fries are the worst because they are made with Gulten, fried in Gluten then sprinkled with Gluten as far as I have read. Burger king fries I have been okay with so far. They usually have a dedicated fryer just for fries so there is no cross there. Then they just leave them alone. I have had them 3 times now and I have been okay so far.

It's crazy that eating a french fry poses such a health hazard!

This morning I screwed up. I put jelly on my rice toast that I must have used to put Jelly on my son's "normal" toast. I am new and now I am very good about not eating Gluten (quite a feat) I am trying to tackle the cross contamination. I can't believe your body can be so sensitive to something. But fog head and gurgle intestines don't lie.

[rumbles]

Yesterday I only had a few apple slices, on an empty stomach. A few

days ago it wasn't on an empty stomach, but I ate a lot of them.

Hubby's gluten intolerant, but not anywhere near as reactive as I am,

and has been eating the apple slices for weeks, - this could explain

why he's had such a vapor problem lately. Last night was the first

night in a long time that he didn't snack on them, and last night was

the first night in a long time that he wasn't a walking 'perfume factory.'

[happygirl]

  mastiffmommy said:

McDonanld's fries are the worst because they are made with Gulten, fried in Gluten then sprinkled with Gluten as far as I have read.

There are many threads about this, but a brief update: Celiac associations have tested them, declared them safe, McDonald's policy is that they are fried in dedicated fryers, and they are not sprinkled with gluten.

All that being said, there are always risks with eating out, and it is a personal decision.

[Sailing Girl]

Just placed an order for the Eden tamari -- thanks for the recommendation! I called Eden first, and the customer service rep said it was manufactured in a wheat-free facility.

I checked out the San-J website -- their tamari is NOT made in a wheat-free facility (as I suspected, given that they're a small operation and most of their products contain wheat). However, the site said the wheat-free tamari is "made in a plant inspected and certified by the Gluten Free Certification Organization," and tests at less than 5 ppm. So either I got a contaminated batch (possible) or I'm reacting to 5 ppm (also possible, given that I react to many, many allegedly "gluten free" products, including grain-derived alcohol and vinegar).

The awful thing is, I've been using the San-J tamari for *weeks* (I got the big bottle) to saute my DD's hot dogs for school lunches (she likes her hot dogs spicy). That could be the source of some of the cross contamination I know she's had lately , although her father (my ex) toasting her gluten-free bagels in his gluten toaster surely has been another source!

[lizard00]

  happygirl said:

There are many threads about this, but a brief update: Celiac associations have tested them, declared them safe, McDonald's policy is that they are fried in dedicated fryers, and they are not sprinkled with gluten.

All that being said, there are always risks with eating out, and it is a personal decision.

Thank you Laura!

I just want to reiterate, that my question was not to start a debate as to whether they should be considered safe or not. Since they are considered safe, but given what is on their website, I simply wanted to know how many, if any, super sensitive celiacs could handle them.

[jerseyangel]

  lizard00 said:

I just want to reiterate, that my question was not to start a debate and to whether they should be considered safe or not. Since they are considered safe, but given what is on their website, I simply wanted to know how many, if any, super sensitive celiacs could handle them.

I knew exactly why you asked and I'm glad you did. As I said, it's something that I've often wondered about myself.

[mastiffmommy]

  happygirl said:

There are many threads about this, but a brief update: Celiac associations have tested them, declared them safe, McDonald's policy is that they are fried in dedicated fryers, and they are not sprinkled with gluten.

All that being said, there are always risks with eating out, and it is a personal decision.

To answer the original question, no, I can't handle them but Burger King I have had 3 times now without issue.

I apologize if my information is outdated that I have referenced. It is so confusing to try and not get sick as even cross contamination kills me, even McDonald's lists wheat as an ingredient in their fries in their nutrition guide as of today: Open Original Shared Link

Sigh! Trial and error! Thanks!

[happygirl]

Mastiffmommy - You may want to do some searches for more information, as the information you have is not the full story. If you need more info, feel free to PM me!

I'm sorry for hijacking this thread....back to super sensitive Celiacs

---------

By the way, has anyone else on here attempted to eat at Uno's? They now have gluten free pizza. We tried it (and I'm super sensitive) - and I did wonderfully! I'm sure you all can understand what it meant to have a good gluten free pizza that didn't make me sick and was absolutely delicious.