Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

I'm Still Being Glutened!?


madi

Recommended Posts

madi Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

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

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
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

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

i thought listerine was safe

Lisa Mentor
i thought listerine was safe

Listerine Whitening Pre-Brush is gluten free.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator
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

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

NoGluGirl Contributor
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
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

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.