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

Gluten Gluten Everywhere-really?

momtopa

By momtopa
in Coping with Celiac Disease

Recommended Posts

momtopa Rookie
momtopa
Posted

I've been doing a ton of reading lately on the topic of Celiac Disease. I'm finding that not only do I need to watch what I eat, but is it true that I have to watch what I wash myself and my dishes as well? From "The Gluten-Free Diet" book I'm reading that I need to watch for certain other ingredients used in things that aren't foods...tocopheryl acetate for instance. I found that it's in my favorite lotion and perfume. I looked at the bottle of Dawn dish detergent and it's also in it. I'm reading that I need to be so careful as to the laundry detergent I use as well due to the chance of transfer of gluten from my dish towels to my dishes. It's soooo frustrating because I try VERY hard to make sure I'm not putting gluten in or near my mouth, but do I really need to watch the dish detergent and laundry detergent as well?

My husband's aunt has celiac disease also but REALLY does not follow the diet at all (cheats all the time) and I don't want to be like her. I want to do this right. She did tell me, however that she can't use any makeup etc due to having celiac disease. So, when I was dx'd I asked my doc and he told me I could only get gluten if I ingested it. He made me feel kind of silly, but now I don't feel so silly any more.

I was dx'd with celiac disease in October and had apparently been suffering from severe gas/bloating bouts for several years. So, I never have the big D everyone refers to on here...so, I'm not sure if this stuff is actually bothering me or not. I also hear that even though I don't have a reaction to gluten that it's still damaging my villi.

Ugh! What do I listen to? I feel like I'm driving my family crazy.

Mamaw---I'm hoping to come to your Celiac support meetings when the church in Butler is available...

It's so nice to find this site and talk to others who are going thru the same thing.

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

Celiac.com Sponsor (A8-M):


CecilyF Rookie
CecilyF
Posted

I am new too, so I cannot offer any "words of wisdom." I am very interested to know what you find out.

I am slowly trying to change everything over to gluten free. Never thought about dishwashing liquid! I do know that All Free & Clear has been mentioned as a safe detergent to use.

I am wrecked about my lipstick...a girl's gotta have her lipstick! :D There are several gluten-free makeup lines, and I am in the processing of checking them out too. Does anyone know about Jane Iredale? I have roscea and it works well with my redness, so I hate to give it up.

There is a wealth of information on this website and everyone is so helpful. Maybe we will get some answers soon.

Cecily

davesa Newbie
davesa
Posted
I've been doing a ton of reading lately on the topic of Celiac Disease. I'm finding that not only do I need to watch what I eat, but is it true that I have to watch what I wash myself and my dishes as well? From "The Gluten-Free Diet" book I'm reading that I need to watch for certain other ingredients used in things that aren't foods...tocopheryl acetate for instance. I found that it's in my favorite lotion and perfume. I looked at the bottle of Dawn dish detergent and it's also in it. I'm reading that I need to be so careful as to the laundry detergent I use as well due to the chance of transfer of gluten from my dish towels to my dishes. It's soooo frustrating because I try VERY hard to make sure I'm not putting gluten in or near my mouth, but do I really need to watch the dish detergent and laundry detergent as well?

My husband's aunt has celiac disease also but REALLY does not follow the diet at all (cheats all the time) and I don't want to be like her. I want to do this right. She did tell me, however that she can't use any makeup etc due to having celiac disease. So, when I was dx'd I asked my doc and he told me I could only get gluten if I ingested it. He made me feel kind of silly, but now I don't feel so silly any more.

I was dx'd with celiac disease in October and had apparently been suffering from severe gas/bloating bouts for several years. So, I never have the big D everyone refers to on here...so, I'm not sure if this stuff is actually bothering me or not. I also hear that even though I don't have a reaction to gluten that it's still damaging my villi.

Ugh! What do I listen to? I feel like I'm driving my family crazy.

Mamaw---I'm hoping to come to your Celiac support meetings when the church in Butler is available...

It's so nice to find this site and talk to others who are going thru the same thing.

I know how you feel!!! I am only at day 5 but I feel like my diagnosis has taken over my life! I am on the internet several hours a day researching. Many people I have spoken to have a friend who is also a celiac but I haven't met one in person. I feel like I have so many questions to ask. So sorry that I don't have any answers for you but I do feel your pain of questions.

Juliebove Rising Star
Juliebove
Posted

Dawn is not gluten-free? Hmmm... I just bought some. Haven't used it yet on the dishes but daughter has used it on her oily hair. Could explain the weird rash she now has on her face.

Juliebove Rising Star
Juliebove
Posted

Hmmm... I just did a seach and although the links it turned up are old, it indicated that Dawn is gluten-free.

brigala Explorer
brigala
Posted

Here's my opinion:

Start with the food, and any cosmetics or lotions you're likely to ingest. If you regularly slather your hands with lotion during the day, make sure it doesn't contain wheat. Your lipstick and any lip gloss or lip balm should be gluten-free. Any vitamins, supplements, or medications that you take must also be gluten-free. Your toothpaste and mouthwash should be gluten-free (fortunately, most of them are, but do check).

Then, if you continue to have symptoms, you may need to start eliminating other things. My sister has had to get rid of all shampoos and cosmetics which contain gluten. She'd been wondering for years why everything gave her a rash. I have a very sensitive scalp and I have only found a couple of shampoos that don't make my scalp bleed -- both of which happen to contain wheat germ as an ingredient. I'm not about to go through the pain and suffering of trying all the gluten-free shampoos in an effort to find one that works for me, because the wheat in my shampoo doesn't seem to bother me.

Just my $0.02.

jerseyangel Proficient
jerseyangel
Posted

Dawn Dishwashing Liquid is gluten-free.

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

Celiac.com Sponsor (A8-M):


momtopa Rookie
momtopa
Posted
  • Author
Dawn Dishwashing Liquid is gluten-free.

I've seen that on here too,but according to the Gluten-Free Diet book, tocopheryl acetate is listed as an ingredient that could indicate the presence of gluten and my bote of Dawn includes that ingredient. I don't get "sick" b/c of gluten contamination

. I'm just worried about the damage that's being done to my body as a result of it. So, if I don't get an itchy rash I shouldn't worry about it?

psawyer Proficient
psawyer
Posted

Tocopherols are not a concern, according to the Canadian Celiac Association. I certainly don't give them any thought.

Which book are you referring to? The recent one by Elizabeth Hasselbeck has a lot of misinformation in it.

momtopa Rookie
momtopa
Posted
  • Author
Tocopherols are not a concern, according to the Canadian Celiac Association. I certainly don't give them any thought.

Which book are you referring to? The recent one by Elizabeth Hasselbeck has a lot of misinformation in it.

yes, that's the one! Is that why I'm goin crazy? Lol

sunnybabi1986 Contributor
sunnybabi1986
Posted

I haven't read Elizabeth's book, but the comments I've seen regarding it are less than complimentary. Elizabeth seems to make it seem as if you should be paranoid 24 hours a day and that's just not true. I've been gluten free for...3 months now, and I'm still figuring this this thing out myself, but what I understand, the true damage to your body occurs when you ingest gluten and your immune system is activated in your small intestine to attack the gluten and to attack your own tissue. I've never had a skin reaction to gluten, so I don't really pay much attention to soaps or shampoos, since I'm very careful not to get them in my mouth, eliminating the chance of ingesting them.

I may be wrong, but I think that a skin reaction to gluten is different from person to person, and if you don't have a skin reaction, you don't need to be overly worried about products that will only come in contact with your skin. You just want to make sure they don't make it into your mouth.

As far as being overwhelmed and feeling as if gluten is everywhere, just take a breath and start with food. I started out with brown rice and veggies and grilled chicken for awhile and have added hundreds of foods in the past few months. Eliminating gluten is not a process that will happen overnight, don't expect it to. Give yourself time and you'll start finding so many ways to adapt and change. I'm amazed at how different things are for me since I began just 3 months ago. I started out feeling like you do, frustrated and confused, but slowly, it all comes together and you'll get more and more confident. Read your labels, call the companies (I call them in the grocery store, standing in the aisles, with the product in my hand!) and keep focusing on what you CAN eat! PM me if you want a list of recipes/foods that I love, it might help.

You can do it!! Pulling for you,

Janie

Mtndog Collaborator
Mtndog
Posted
I've been doing a ton of reading lately on the topic of Celiac Disease. I'm finding that not only do I need to watch what I eat, but is it true that I have to watch what I wash myself and my dishes as well? From "The Gluten-Free Diet" book I'm reading that I need to watch for certain other ingredients used in things that aren't foods...tocopheryl acetate for instance. I found that it's in my favorite lotion and perfume. I looked at the bottle of Dawn dish detergent and it's also in it. I'm reading that I need to be so careful as to the laundry detergent I use as well due to the chance of transfer of gluten from my dish towels to my dishes. It's soooo frustrating because I try VERY hard to make sure I'm not putting gluten in or near my mouth, but do I really need to watch the dish detergent and laundry detergent as well?

It's so nice to find this site and talk to others who are going thru the same thing.

Hi there- welcome to the site! It's not nearly as scary as that book makes it sound. As far as I know as well, tocopherol acetate is not a problem.

I don't know of any dish soaps that contain gluten. That doesn't mean there are none, but I have yet to encounter one in 5 years of being gluten-free. Same with laundry detergents.

Like someone else said, worry about food first. Then, cosmetics and body products. Wheat is found in many things that need an emollient quality like moisturizers, hair conditioners. But I have found that it is usually clearly labeled. I've also noticed that since people have become more aware of celiac and allergies, some companies have switched gluten out of their products. For example, bath and Body Works shower cream used to contain oat. It no longer does.

I am wrecked about my lipstick...a girl's gotta have her lipstick! :D There are several gluten-free makeup lines, and I am in the processing of checking them out too. Does anyone know about Jane Iredale? I have roscea and it works well with my redness, so I hate to give it up.

The Jane Iredale I have has soy, but no gluten. Read the label or call the company (or do a google search for your particular product).

Gemini Experienced
Gemini
Posted
I haven't read Elizabeth's book, but the comments I've seen regarding it are less than complimentary. Elizabeth seems to make it seem as if you should be paranoid 24 hours a day and that's just not true. I've been gluten free for...3 months now, and I'm still figuring this this thing out myself, but what I understand, the true damage to your body occurs when you ingest gluten and your immune system is activated in your small intestine to attack the gluten and to attack your own tissue. I've never had a skin reaction to gluten, so I don't really pay much attention to soaps or shampoos, since I'm very careful not to get them in my mouth, eliminating the chance of ingesting them.

I may be wrong, but I think that a skin reaction to gluten is different from person to person, and if you don't have a skin reaction, you don't need to be overly worried about products that will only come in contact with your skin. You just want to make sure they don't make it into your mouth.

This is pretty good, common sense advice and it's too bad people are still getting all kinds of misinformation about how to live gluten-free. No wonder there is so much paranoia!

A topical reaction to gluten is not a Celiac reaction. That's an allergic reaction and has nothing to do with Celiac Disease. It's usually caused by a wheat allergy or another sensitivity to something in the offending product. Unless a person eats their shampoo or make-up or chooses not to be careful about ingestion, it is not necessary to use gluten-free products, period. Lotion for the hands and lip products are the exceptions, as they stay on and are not washed off. The whole dish detergent worry is just plain laughable. Unless a person does not wash off the soap they use to do their dishes, and lets it dry on and then eats off that plate, you won't be suffering a gluten hit anytime soon. ;) No wonder people freak out on diagnosis if this is what they are reading!

In fact, according to the top Celiac doctors in this country and elsewhere, the skin version of Celiac, DH, is also not caused by touching gluten products. It is a reaction from within from ingesting wheat, barley or rye. Anything else is an allergy, which makes sense.

To any of those new to Celiac out there....read Dr. Peter Green's book entitled: Celiac Disease: The Hidden Epidemic. It's the most timely source of information

out there and it's all correct.

jerseyangel Proficient
jerseyangel
Posted
To any of those new to Celiac out there....read Dr. Peter Green's book entitled: Celiac Disease: The Hidden Epidemic.

I agree--if you only read one thing on the subject, make it this :)

momtopa Rookie
momtopa
Posted
  • Author

Thanks to all of you. I was really beginning to feel paranoid until I read these responses today. I got some inaccurate info from the book I was referring to and some other stuff I saw online. It' scary how much research we're left to do on our own and when we're newly diagnosed and reading inaccurate information no wonder there's so much confusion.

Up until this weekend, I was really feeling like I could do this just knowing the damage that would be done to my body IF I consumed any gluten. So, I feel confident that I CAN and WILL do this having the correct information in my hands. I will def try to locate Dr. Green's book. It's so nice to have a good reference to go to.

mamaw Community Regular
mamaw
Posted

momtopa

welcome, I guess if you are planning on attending the Butler gluten-free ministry you must be close to Butler?????? I must say I agree with Peter, Jersey Angel.....& a few others who have posted.....please send me a personal message with your name & phone number I will call you. Even though the church is not yet available I'm still working with newbies one on one..... I will say I'm not fond of Elizabeth Hasselbeck's book! Its great that a celebrity is talking about awareness but the info presented must be valid & correct. Since her book , I think she has seen & heard the anger from the celiac community & has tried to be more correct. When she was on Dr Oz I didn't hear her state she cheats!!

I do believe that if you are a very sensitive person you may be one who must completely stay away from gluten in all forms. As you go along you may find that you are very sensitive to things that have nothing to do with celiac disease...this is not the case for everyone.

Again I extend an invitation to help you so you don't become confused & angry over misinformation....

blessings

mamaw

Archived

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

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy. Benfotiamine and other forms of Thiamine do not bother me at all. There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes. The sulfur in thiamine is in a ring which does not trigger sulfa allergy...
    2. Wheatwacked
      - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped. It sounds more like you are suffering from malnutrition. Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here. Malnutrition...
    3. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well. I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given...
    4. Wheatwacked
      - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

      Hello @Scatterbrain, Are you getting enough vitamins and minerals. Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D. By the way you should get your mom checked for celiac disease. You got it from your mom or dad. Some studies show that following a gluten-free diet can stabilize or improve symptoms...
    5. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748
    SarahZ
    Newest Member
    SarahZ
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • 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.