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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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