Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

How Gf Should I Be?


hthorvald

Recommended Posts

hthorvald Rookie

Hi, I'm new to both Celiac Disease and this forum, so apologies if I make any faux pas. I was diagnosed on May 3, 2004, and am completely (or so I think) gluten-free. However, should I also use gluten-free shampoos and conditioners? I don't have DH understand that I don't need to be that careful with the topical stuff, but want to be sure. I love Aveda products, but the majority of their products are not gluten-free. I get really bad migraines and it was suggested that shampoos can get absorbed into the scalp and into the system. It sounds far-fetched to me, but would like to get opinions. Thanks!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

Technically, you do not need to use gluten-free lotions, shampoos, etc. However, many like to have a gluten-free shampoo in the event that it gets in their eyes or mouth, a gluten-free lotion since they might touch something after putting on the lotion, etc........so technically you don't need it, although for contamination purposes it can't hurt.

Link to comment
Share on other sites
GEF Explorer

Now, I never thought that shampoos could make a difference either... but I did get this shampoo called Nioxin from the salon, since my sylist said it makes your hair grow faster. I have a wedding approaching and thought I'd see if it actually worked. After a week or so of using it, I got a tremendous headache and had bad cloud-head, and I'm not one to get headaches and I don't have DH. Apparently has wheat something-or-other as one of the top ingredients and has peppermint oil that apparently helps with absorption. All I know is that I will never use it again.

Gretchen

Link to comment
Share on other sites
MySuicidalTurtle Enthusiast

I think it is important to be fully glutenfree. You never know when you might have a reaction to your shampoo, make-up, or lotion. When you start getting gluten out of your life you may notice that suddenly you have small or big reactions to those products. I don't have DH but after going glutenfree my shampoo started giving me problems that it hadn't before and then my make-up, too. It is up to you though. . .some people don't mind it.

I just think if I are going and being glutenfree, washing my hands, avoiding cross-contamination that I shouldn't use glutenproducts on my body at all.

Link to comment
Share on other sites
hthorvald Rookie

Can anyone recommend really good, gluten-free hair products? I've tried nutrogena shampoo and conditioners, with Pantene mousse. Not really good for my hair type. But, my headaches have subsided.

Thanks.

Link to comment
Share on other sites
Racheleona Apprentice

Kiss my face, and burt's bees make many gluten-free shampoos. I was wondering the same thing about going to the extreme of using gluten-free shampoos lotions etc., but when I took a shower this morning, I realized a lot of rinse off does go all over my face, and little in my mouth, so I don't want to take the risk, and plus sometimes my hair flies in my mouth when I'm in the wind. And if you use lotion with gluten, and eat with your fingers you might contaminate! So I would go the extra mile.

Rachel

Link to comment
Share on other sites
tarnalberry Community Regular

I don't have DH, and I know you can't absorb gluten through your skin, but I go with better safe than sorry.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

I don't jabe DH but i wouldn't want to accidenttaly be contaminated

Link to comment
Share on other sites
celiac3270 Collaborator

I actually haven't checked shampoo, which I should've........there are a few different brands in my house for different people -- I don't really care what brand I use, but does anyone know about Suave or Johnson & Johnson?

Link to comment
Share on other sites
CoolCat1 Rookie

I use Amplify from the salon and sometimes Sebastian. Is there a web site to find out about shampoos? Do I need to contact the manufacturer or is there an easier way. What makeup is bad? :(

Link to comment
Share on other sites
hthorvald Rookie

Make up. Wow, another consideration. Believe it or not, the Neutrogena lip sticks and gloss are gluten-free and look pretty good, too. As far as foundation, etc., I haven't made that switch yet. I use Bobby Brown and have tried unsuccessfully to reach them by email. But, I'll keep trying. I agree with all the responses about being better safe than sorry. Thanks for the input.

I practically live at Whole Foods and just bought their 365 Bath and Shower gel. I'll give that a shot. And, Burts Bees cuticle cream. I think as I run out of things, I"ll see if I can replace them with a gluten-free product. So far, so good (except the shampoo - but I have pretty fine hair).

If anyone has any other suggestions, please let me know. And, thanks again for all the great responses.

Link to comment
Share on other sites
  • 3 weeks later...
natalieb Rookie

I have had this question verified by several noted authorities both doctors and clinical nutritionists as when I first read some of the posts on this subject, I flew into a tizzy and went to whole foods on the search for gluten-free everything. Please.... everyone out there who is creating mass panic in telling people that they must have gluten-free shampoos, conditioners, lotions, etc, stop....The only thing that should be gluten-free is anything, and I mean anything thats goes into your mouth. This means lipstick, toothpastes, mouth rinses. I spent alot of money thinking that I had to watch every single thing.....obviously if you are getting a weird rash after using a shampoo, etc, then stop using it. I think we can create a huge mass hysteria by misinforming people.

Link to comment
Share on other sites
plantime Contributor

I use Matrix Curl Life Shampoo, Pantene conditioner for normal hair, and step #3 of the Curl Life line. For lotion, I use Suave Skin Therapy Cocoa Butter. If I use anything with wheat in it, my skin breaks out, and I itch horribly. I don't think it will cause any kind of mass hysteria or panic to inform Celiacs that they should be careful of everything they use. I do like to eat with my fingers sometimes, and I don't want to accidently contaminate myself.

Link to comment
Share on other sites
Dwight Senne Rookie

I read a similar post several months ago and laughed it off thinking people were getting a little paranoid. Then, about a month ago, my hairstylist gave me a hair gel to use. She put it in my hair and sent a tube home with me. Later that evening, I had a "Celiac attack" with severe bloating and diarrhea!

Normally, I am not real sensitive, and that day I did not eat anything any different than I have been eating for months. When I looked on the label of the tube of hair gel, I seen it contained wheat! I never would have believed this if I had not experienced it myself.

Needless to say, I no longer think it is paranoid to be concerned about such things! Nor do I think I am inducing hysteria by relating a personal experience.

Link to comment
Share on other sites
lovegrov Collaborator

Sorry, Natalie, but I think you're wrong. We're not saying you absorb this stuff through your skin because you can't, but ANYTHING you put on your skin, such as lotion, can get into your mouth. And most people get water in their mouth when they shampoo. I can assure you I know some very sensitive people who have gotten sick this way.

richard

Link to comment
Share on other sites
Guest gfinnebraska

hthorvald ~ I have thin, fine hair and I use Pantene for fine, thin hair. It is gluten-free and works great. Actually makes my hair feel and look thicker. Bonus!! :) I have been using Cover Girl foundation because I read on another thread that it is gluten-free.

Link to comment
Share on other sites
judy04 Rookie

I use Garnier Fructis(sp?), it is gluten free. I used to use Nexxus

and my head was always itchy. After I looked at the list of ingredients

and found it contained wheat!

Natalie, I'm sorry to disagree with you, I do not have a definite diagnosis

of Celiac, but I can't tolerate gluten in any form. I don't want to be

disrespecful of your doctor, but they have a lot to learn. A lot of my

symtoms were non-GI and I was under the care of one of the best

allergist on the east coast and he never considered testing me for

antibodies, even after I told him that I thought I had a wheat allergy

or intolerance. The only thing he did was a scratch test which was neg

for wheat. Had he done a Celiac Panel in 1993 I could have avoided

10 years of hell. I finally got so sick that I couldn't walk into the hospital

on my own, was referred to a GI doc who diagnosed me as gluten

intolerant, possible Celiac. As far as doctors, I had to educate my dentist

because I have had some nasty reactions from sitting in the dentist chair

and being" zapped" with gluten. I recently gave my family doctor a

list of gluten-free meds to keep in my chart. He was very impressed and asked

where I got it. My GI doc, who I respect ,didn't know if Prevacid and/or

Nexium were gluten-free and he prescribes them every day!

I don't think this forum is misinforming people. I find people who have

suffered for years have more knowledge of this disease than most

physicians. I have been a nurse for years and I don't believe in" bashing"

doctors, but a lot of us have been sick for a lot of years and have been

at the mercy of doctors who think that Celiac is very "rare" and is found

in only thin people. I hope that they are getting better educated in med

school.

Sorry to be ranting tonight... Judy :angry:

Link to comment
Share on other sites

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    2. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

    3. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

    4. - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

    5. - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748

    Suzi374
    Newest Member
    Suzi374
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
×
×
  • Create New...