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 Am An Idiot!


CNV2855

Recommended Posts

CNV2855 Contributor

I have had a rough last few months, with wild - wild swings between my good days and bad days. It seemed like I was continuing to get glutened by I kept limiting my diet and still... symptomatic.

I came across a post on another forum from 2006 where someone mentioned they had red, painful, itchy bumps on their scalp and they went away after switching to a gluten free shampoo. I saw many other mentions of gluten containing hygiene products causing skin reactions and they PERFECTLY described what I experience. I have those same bumps, I have the same DH rash that doesn't go away... These itchy bumps are worst on my head and shoulders and pretty bad on my back. So I immediately went to check my shower and bath. I could only verify one product, Dove body wash, gluten free out of over 15-20 different bottles of various soaps and shampoos. Needless to say I went to grab the garbage bag.

Then I saw the bottle of BIOINFUSION olive oil moisturizer for hair that I had in the corner. I turned it over and it immediately caught my eye. Hydrolyzed oat protein and wheat extract (triticum). This was leave-in conditioner that I had been using for over a year. I was putting this stuff in my hair, it would stay there because you don't wash it out and then when I'd go to sleep I'm sure some rubbed off on my pillow and night after night I was putting my face into it by sleeping on possibly contaminated pillows. This would partly explain the wild inconsistent swings that I was having in my symptoms.

This also explains why my bumps are worse in certain spots. My head... where I'm applying this stuff, and when I shower it runs down my shoulders and back.

I even read threads that people here react to an ingredient in Tide (not necessarily gluten). Which is what I use! :( Wow. How did I go this long without taking care of the non-food products. I'm seriously mad at myself right now. I've even been using gillette shaving cream for YEARS. Their shaving cream isn't on their gluten free list, only gels. Could explain why my face swelled everytime I shaved.

I need some good recommendations from cologne, to shampoos, to shaving creams, to laundry detergents. I'm throwing it all out.


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

I have had a rough last few months, with wild - wild swings between my good days and bad days. It seemed like I was continuing to get glutened by I kept limiting my diet and still... symptomatic.

I came across a post on another forum from 2006 where someone mentioned they had red, painful, itchy bumps on their scalp and they went away after switching to a gluten free shampoo. I saw many other mentions of gluten containing hygiene products causing skin reactions and they PERFECTLY described what I experience. I have those same bumps, I have the same DH rash that doesn't go away... These itchy bumps are worst on my head and shoulders and pretty bad on my back. So I immediately went to check my shower and bath. I could only verify one product, Dove body wash, gluten free out of over 15-20 different bottles of various soaps and shampoos. Needless to say I went to grab the garbage bag.

Then I saw the bottle of BIOINFUSION olive oil moisturizer for hair that I had in the corner. I turned it over and it immediately caught my eye. Hydrolyzed oat protein and wheat extract (triticum). This was leave-in conditioner that I had been using for over a year. I was putting this stuff in my hair, it would stay there because you don't wash it out and then when I'd go to sleep I'm sure some rubbed off on my pillow and night after night I was putting my face into it by sleeping on possibly contaminated pillows. This would partly explain the wild inconsistent swings that I was having in my symptoms.

This also explains why my bumps are worse in certain spots. My head... where I'm applying this stuff, and when I shower it runs down my shoulders and back.

I even read threads that people here react to an ingredient in Tide (not necessarily gluten). Which is what I use! :( Wow. How did I go this long without taking care of the non-food products. I'm seriously mad at myself right now. I've even been using gillette shaving cream for YEARS. Their shaving cream isn't on their gluten free list, only gels. Could explain why my face swelled everytime I shaved.

I need some good recommendations from cologne, to shampoos, to shaving creams, to laundry detergents. I'm throwing it all out.

First of all, you're not an idiot. I felt like a fool too when I found wheat flour in my cooking spray, had not even thought to look. I use Pantene products for my hair, Nivea for chapstick (another one you have to watch). "Free" detergents like Tide free should be good. I have family members with skin sensativity issues and they do not use fabric softeners.

navigator Apprentice

I also had problems which turned out to be from cleanser, exfoliator and lip balm. They were wonderful products from the dermalogica range but contained wheat. The company were great however, not only did they supply a full list of their products which were gluten free but deducted the cost of the problematic products from my next purchase.

I use kerastase age premium hair products, Chanel body lotion and cologne, Balm Balm lip balm, Persil non-bio laundry detergent and Colgate and Aquafresh toothpaste.

CNV2855 Contributor

I also had problems which turned out to be from cleanser, exfoliator and lip balm. They were wonderful products from the dermalogica range but contained wheat. The company were great however, not only did they supply a full list of their products which were gluten free but deducted the cost of the problematic products from my next purchase.

I use kerastase age premium hair products, Chanel body lotion and cologne, Balm Balm lip balm, Persil non-bio laundry detergent and Colgate and Aquafresh toothpaste.

Were you having any reactions to the stuff? I find it so interesting that there are SO many people who report having a gluten reaction when using shampoos, conditioners, and what not with the stuff in it yet Mayo and other hospitals say, "that's impossible, gluten can't be absorbed through the skin!"

bartfull Rising Star

Were you having any reactions to the stuff? I find it so interesting that there are SO many people who report having a gluten reaction when using shampoos, conditioners, and what not with the stuff in it yet Mayo and other hospitals say, "that's impossible, gluten can't be absorbed through the skin!"

Sometimes you sneeze while you're shampooing and get a little in your mouth.Or sometimes you forget you just washed your hair and fail to rewash your hands before eating.

But even if none of that happened, why in the world would you want to take a substance that makes you ill when you ingest it, and rub it into your skin?

GlutenFreeManna Rising Star

Nope, not an idiot. Very smart actually to figure it out. ;)

Roda Rising Star

I make my own laundry powder: 2 cups borax, 2 cups washing soda, 1 bar soap (fels naptha, zote, etc.) ground/shredded fine. Mix all together for laundry powder. I've been drying my soap out in the microwave then adding it to my food processer with some of the other ingredients to get it powdered. It works well. I use about 2-3 tablespoons full per load. You may have to use more or less depending on how soiled the clothes are and water conditions ie. soft/hard. I was spending a small fortune for the perfume/dye free laundry detergents since we have issues with scents. I have had no skin reactions so far with this. I also, to help with any residue, put 1/4 cup of white distilled vinegar in the rinse cycle. I actually put it in a downey ball at the beginning or I would forget. Glad you figured things out. Your NOT stupid at all! Just FYI for anyone who uses Off bug spray, the last time I talked to the company (about 1 1/2 yrs ago) it wasn't gluten free either. HUH? :o


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



Celiac.com Sponsor (A8-M):



navigator Apprentice

Were you having any reactions to the stuff? I find it so interesting that there are SO many people who report having a gluten reaction when using shampoos, conditioners, and what not with the stuff in it yet Mayo and other hospitals say, "that's impossible, gluten can't be absorbed through the skin!"

Yes, the main reaction was debilitating fatigue. I couldn't understand where I'd been glutened as I'm very careful and house is gluten free. It was my son-in-law who got me to think beyond food cross-contamination and go through everything I'd done which was different. The only thing was that I'd changed to Dermalogica skin care. I then checked ingredients and discovered it had wheat. Coeliac UK state that you can't be affected by toiletries, shampoos etc so I'd never checked them. Lesson learnt the hard way!

Whilst food labels are easy to read, the problem with toiletries and cosmetics is that they often use chemical and latin names rather than wheat, barley, rye. I hope this list helps you.

BARLEY DERIVED INGREDIENTS

AMINO PEPTIDE COMPLEX

BARLEY EXTRACT

HORDEUM VULGARE (BARLEY) EXTRACT

PHYTOSPHINGOSINE EXTRACT

WHEAT DERIVED INGREDIENTS

AMP-ISOSTEAROYL HYDROLYZED WHEAT PROTEIN

DISODIUM WHEATGERMAMIDO PEG-2 SULFOSUCCINATE

HYDROLYZED WHEAT GLUTEN

HYDROLYZED WHEAT PROTEIN

HYDROLYZED WHEAT PROTEIN PG-PROPYL SILANETRIOL

HYDROLYZED WHEAT STARCH

HYDROXYPROPYLTRIMONIUM HYDROLYZED WHEAT PROTEIN

STEARYLDIMONIUMHYDROXYPROPYL HYDROLYZED WHEAT PROTEIN

WHEAT AMINO ACIDS

WHEAT BRAN EXTRACT

WHEAT GERM EXTRACT

WHEAT GERM GLYCERIDES

WHEAT GERM OIL

WHEAT GERMAMIDOPROPYLDIMONIUM HYDROXYPROPYL HYDROLYZED WHEAT

PROTEIN

WHEAT PROTEIN

WHEAT (TRITICUM VULGARE) BRAN EXTRACT

TRITICUM VULGARE (WHEAT) FLOUR LIPIDS

TRITICUM VULGARE (WHEAT) GERM EXTRACT

TRITICUM VULGARE (WHEAT) GERM OIL

Jenniferxgfx Contributor

Not an idiot!! You're a sleuth for figuring it out!!

I've done the same thing, too. Not just with gluten bath products, but with a gluten-free but seaweed-containing shampoo. Within a few hours, i had tons of angry red blisters everywhere the shampoo flows when I rinsed. The iodine was the culprit.

It makes me so grouchy that most resources say a skin reaction from touch isn't possible, but we're living proof!

jswog Contributor

Yes, the main reaction was debilitating fatigue. I couldn't understand where I'd been glutened as I'm very careful and house is gluten free. It was my son-in-law who got me to think beyond food cross-contamination and go through everything I'd done which was different. The only thing was that I'd changed to Dermalogica skin care. I then checked ingredients and discovered it had wheat. Coeliac UK state that you can't be affected by toiletries, shampoos etc so I'd never checked them. Lesson learnt the hard way!

Whilst food labels are easy to read, the problem with toiletries and cosmetics is that they often use chemical and latin names rather than wheat, barley, rye. I hope this list helps you.

BARLEY DERIVED INGREDIENTS

AMINO PEPTIDE COMPLEX

BARLEY EXTRACT

HORDEUM VULGARE (BARLEY) EXTRACT

PHYTOSPHINGOSINE EXTRACT

WHEAT DERIVED INGREDIENTS

AMP-ISOSTEAROYL HYDROLYZED WHEAT PROTEIN

DISODIUM WHEATGERMAMIDO PEG-2 SULFOSUCCINATE

HYDROLYZED WHEAT GLUTEN

HYDROLYZED WHEAT PROTEIN

HYDROLYZED WHEAT PROTEIN PG-PROPYL SILANETRIOL

HYDROLYZED WHEAT STARCH

HYDROXYPROPYLTRIMONIUM HYDROLYZED WHEAT PROTEIN

STEARYLDIMONIUMHYDROXYPROPYL HYDROLYZED WHEAT PROTEIN

WHEAT AMINO ACIDS

WHEAT BRAN EXTRACT

WHEAT GERM EXTRACT

WHEAT GERM GLYCERIDES

WHEAT GERM OIL

WHEAT GERMAMIDOPROPYLDIMONIUM HYDROXYPROPYL HYDROLYZED WHEAT

PROTEIN

WHEAT PROTEIN

WHEAT (TRITICUM VULGARE) BRAN EXTRACT

TRITICUM VULGARE (WHEAT) FLOUR LIPIDS

TRITICUM VULGARE (WHEAT) GERM EXTRACT

TRITICUM VULGARE (WHEAT) GERM OIL

Thank you so much for this list! I will be armed with it as I go searching ingredients on the rest of my makeup and other skin care products!

ravenwoodglass Mentor

There are a few companies that will clearly label gluten ingredients. With some of them a lot of their stuff is gluten free. Garneir is one example. I use their shampoos, conditioners, skin products etc. Dove and Suave will clearly label. Shikai, Giovanni and Himalaya are organics that also label clearly. Himalaya even has gluten free on the bottles of their safe stuff.

lemontree1 Rookie

I am very sensitive to Tide products, even Tide Free. The only laundry detergents I've tried that didn't make me break out are All Free and Clear and Sun. I use All because Sun doesn't clean as well.

AVR1962 Collaborator

Were you having any reactions to the stuff? I find it so interesting that there are SO many people who report having a gluten reaction when using shampoos, conditioners, and what not with the stuff in it yet Mayo and other hospitals say, "that's impossible, gluten can't be absorbed through the skin!"

What can happen though is during showers these products can get in the mouth. Anything on the lips can easily get into your mouth. And what has happened to me, and sounds like it happened with the original post, is that you can have a reaction on the skin....bumps, swelling, itching. I was having it and realized it was my eye make-up. Detergents could be a scent sensative issue, many of my family mebers have it.

ravenwoodglass Mentor

Were you having any reactions to the stuff? I find it so interesting that there are SO many people who report having a gluten reaction when using shampoos, conditioners, and what not with the stuff in it yet Mayo and other hospitals say, "that's impossible, gluten can't be absorbed through the skin!"

Celiac is an antibody reaction so while gluten can't be absorbed through intact skin it can enter the system through open wounds, broken skin, the mucous membranes in the eyes, nose, mouth etc. in addition to anything that gets on your skin or hair can potentially get into your mouth. Conditioners and lotions are designed to leave a residue on your skin or hair that can be transfered to an area where it can be absorbed.

Jenniferxgfx Contributor

Btw I use Method dye and scent free laundry soap. It's been safe for me so far. I've NEVER been able to use any tide, even pre-gluten-free. I've also tried the Seventh Gen baby laundry soap, but I'm pretty sure it wasn't as itch-free as Method so I didn't even finish the bottle. I'm too attached to not itching to risk it. Lol.

  • 3 years later...
marlene333 Rookie

OMG - I have had a rash on my arms, neck, chest and part of my back. I am ready to go for "Allergy Scratch Testing"!!! Then I read your post about Tide. I AM AN IDIOT ALSO.....I was using "All Free and Clear" and switched to "Tide Free and Clear" because the "All" was not getting my clothes clean. So now I am thinking that the "Tide" is what is causing this horribly itchy rash. Thanks SOOOOOOOOO much for posting this.  I will stop using Tide and see if things improve. CAN'T WAIT TO GET RID OF THIS 3 MONTH OLD ITCHY RASH!!!!! Thank you!!!

notme Experienced

i use tide free and clear (no perfumes or dyes) regularly with no problem.  i wash my clothes with it.  

cyclinglady Grand Master

I always double rinse my clothes (per my MIL). We are sensitive people here -- it is not related to gluten. I think these new-fangled washing machines do not do a good job of rinsing. My mother's new top loader without an agitator is awful! It seems to just sprinkle the clothes. My SIL's front loader stinks (okay, it is always damp in Georgia). I am keeping my old top-loader without any electronics forever, I hope!

bartfull Rising Star

Just tell you SIL to leave the door open for 8 to 12 hours after washing clothes. Those front loaders have to seal completely so they don't leak, therefore they always stay wet (even here where the humidity is low), and begin to smell. If you let it dry completely before latching it, it will never stink again. :)

cyclinglady Grand Master

Just tell you SIL to leave the door open for 8 to 12 hours after washing clothes. Those front loaders have to seal completely so they don't leak, therefore they always stay wet (even here where the humidity is low), and begin to smell. If you let it dry completely before latching it, it will never stink again. :)

Tx!

Maddi Community Regular

I was going to say the same thing. I always leave my front load washer open for hours until it dries out and I'm actually in GA too!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.