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I'm Still Being Glutened!?

madi

By madi
in Coping with Celiac Disease

Recommended Posts

madi Newbie
madi
Posted

Hi, I'm new to the board and want to thank everyone for the support they offer.

here's my problem. I've been gluten -free for maybe 4 months now and while I've shown vast improvment I am still coping with a wide variety problems. I'm fatigued, depressed, tense, anxious, thinning hair, and still kinda funky BM's when will this stop? My roomates still eat gluten but not very much at all and I still eat out from time to time, could this be what keeps me perpetually ill? I don't know if I could decontaminate my kitchen if I tried. I licked a stamp today, does this effect anyone else? It seems like all the talk about contamination is silly, but then again maybe it would help. Any comments or advice would be really appreciated.

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happygirl Collaborator
happygirl
Posted

Madi,

Welcome to the board! I'm sorry you are having a tough time, but I'm happy you have found this resource.

If you have only been gluten free for 4 months (and I know, it seems like a lifetime!) and you are eating out, you are probably still getting gluten. If you aren't worrying about cross contamination at all, you are still getting gluten. As a result, your body is still reacting to gluten. Gluten FREE turns the switch "off" but gluten lite doesn't turn the switch off.

Most of us thought that contamination was silly.....until we learned better.

Best of luck to you and I hope your health improves!

Let us know what we can do to help.

Laura

blueeyedmanda Community Regular
blueeyedmanda
Posted

Laura is right, the things you would never guess to will contain gluten. Like stamps or envelopes. Shampoos, Conditioners, make-up. Plus if the roomies are gluten-free you could be getting their crumbs.

4-months and your body is still healing, so maybe your BM's are just trying to normalize. It took me awhile. Good Luck!

NoGluGirl Contributor
NoGluGirl
Posted
Hi, I'm new to the board and want to thank everyone for the support they offer.

here's my problem. I've been gluten -free for maybe 4 months now and while I've shown vast improvment I am still coping with a wide variety problems. I'm fatigued, depressed, tense, anxious, thinning hair, and still kinda funky BM's when will this stop? My roomates still eat gluten but not very much at all and I still eat out from time to time, could this be what keeps me perpetually ill? I don't know if I could decontaminate my kitchen if I tried. I licked a stamp today, does this effect anyone else? It seems like all the talk about contamination is silly, but then again maybe it would help. Any comments or advice would be really appreciated.

Dear madi,

My advice is do not eat out. It is too much of a risk. I won't do it. I get too violent a reaction. No stamps or envelopes! They have gluten in the adhesive. I am extremely sensitive to a microscopic amount of the stuff. I also would like to point out cosmetics, shampoos, conditioners, lotions, nailpolish, and soaps can make you sick. The good news is, I have a starter list to help you out.

Household Items:

All Laundry Detergent

Wisk Laundry Detergent

Cascade Dishwasher Detergent

Electrosol Tabs (includes ones with the powerball) NOT THE POWDER, HOWEVER!

Dawn Dish Soaps (all including the Power Disolver)

Murphy's Oil Soap

Hygiene Items:

Dove Soaps, Shampoos, Conditioners, Styling Aids and Lotions (will clearly list gluten if present)

Suave Soaps, Shampoos, Conditioners, Styling Aids and Lotions (will clearly list gluten if present)

SoftSoap Hand Soaps

Colgate Toothpastes (all)

Crest Whitening Expressions Toothpastes

Glide Floss

Vasoline Petroleum Jelly

Johnson's Baby Oil

Mennen Deoderants (clearly list gluten if present)

Beauty Items:

Colgate Simply White

Crest WhiteStrips

Maybelline (gluten is clearly listed if present)

Wet'n Wild (all cosmetics except one of the mascaras is safe)

Cover Girl (gluten is clearly listed if present)

Some sources of cross-contamination you may need to be careful of are:

Your medications (OTC and prescriptions) go to www.glutenfreedrugs.com

Your cosmetics

Your shampoo, conditioner, styling aids, lotion

The grill

The pots and pans (you really should use new cookware, anything that has ever had gluten in it should not be used to prepare your food)

Cooking utensils (spatulas, plastic spoons, pasta strainers, wooden spoons, rolling pins, etc.)

Do not use these products, they are not safe:

Listerine

Crest Pro-Health Rinse

Sally Hansen Strengthening formulas (clear coats)

V05 Hot Oil Treatments (uses wheat germ oil)

Aveeno body wash and lotions (contain oats)

I hope this helps!

Sincerely,

NoGluGirl

P.S. It may be a good idea to go dairy free as well, as many of us cannot tolerate casein either.

alamaz Collaborator
alamaz
Posted

Whoops! I've been using Listerine from time to time. Grrrrrrr!

Madi have you tried an elimination diet? There could be other things you are sensitive to including dairy, eggs, soy etc. I know soy is a huge one for me.

Amy

ReneCox Contributor
ReneCox
Posted

i thought listerine was safe

Lisa Mentor
Lisa
Posted
i thought listerine was safe

Listerine Whitening Pre-Brush is gluten free.

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happygirl Collaborator
happygirl
Posted
Do not use these products, they are not safe:

Listerine

Crest Pro-Health Rinse

Sally Hansen Strengthening formulas (clear coats)

V05 Hot Oil Treatments (uses wheat germ oil)

Aveeno body wash and lotions (contain oats)

What is the problem with listerine and crest pro health rinse---i.e., what are the problematic ingredients?

According to their website:

Is there gluten in Listerine

jerseyangel Proficient
jerseyangel
Posted

I use Listerine Arctic Mint Mouthwash with no problems. :)

NoGluGirl Contributor
NoGluGirl
Posted
What is the problem with listerine and crest pro health rinse---i.e., what are the problematic ingredients?

According to their website:

Is there gluten in Listerine

gfp Enthusiast
gfp
Posted
Please be careful about what you post.

Whereby its always better to be certain, its far better to post something your unsure about or have reacted to than not IMHO...

i.e. If you post sometihng is safe then its mopre important to be sure than something is not... because at least the latter won't hurt anyone :D

Most products are NOT specifically tested for gluten. It doesn't mean that they have gluten in them though.

Herein lies the problem....IMHO...

Its a bit of a crap shoot out there.... and some stuff is just far more likely to contain gluten or be derived from gluten containing stuff than others....

"Not tested" just varies enormously... like a salad of raw vegetables is likely pretty safe excluding CC.... compared to a can of sometihng like "industrial" soup where unless the manufacturer makes an effort the chance is a lot of the soups would contain gluten...

In the former case so long as the prep area is gluten-free it sounds pretty safe but the longer the list of ingredients gets, especially compound ingredients where one ingredient itself contains several then the more likley one may contain gluten...

anyway ... I think its much "safer" overall to have sometihng on the "unsafe list" incorrectly than something not safe on the safe list...

Guest AlabamaGirl
Guest AlabamaGirl
Posted

I kept thinking the same thing (that I was being glutened) but then I found out that I was also reacting to rice. (I have the EXACT same reaction as if I ingested gluten.) You may indeed being ingesting small amounts of gluten, or you may still be ill from the past gluten-laden lifestyle. However, it may be worth investigating some other foods further. If what I've read is correct, some celiacs won't completely heal without removing other items from their diet also.

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