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-   -   Curlies with Gluten sensitivity or intolerance (http://www.naturallycurly.com/curltalk/general-discussion-about-curly-hair/93657-curlies-gluten-sensitivity-intolerance.html)

buttrflys 12-22-2009 10:25 AM

Curlies with Gluten sensitivity or intolerance
 
Hi,

I am new to posting but wanted to share a recent experience with you. I was diagnosed with Celiac disease in May 2009. For those of you that don't know what Celiac is, it is basically an intolerance to gluten(wheat,barley,malt,etc) that has an autoimmune response in the body making the person very sick and often vitamin deficient.

Anyway, I have changed my diet completely (and my BF's unfortunatley for him) and am extremely careful of anything I eat and even put on my face and lips. However, I never really gave much thought to my hair products and had never had a reaction...until today :(

I used my Aubrey organics GPB conditioner this morning (have used it before with no prob) and about 20 minutes later broke out in intensely itchy "hives" on my elbows, knees, ears and scalp. I never thought to check my conditioners ingredients for gluten, but when I checked my AO, I discovered "wheat germ oil" was the second ingredient! VERY bad ingredient for celiacs!!

So long story short, I just wanted to share my experience with all of you, and if any of you have had a similar experience, please feel free to share :)

nicolewoods1 12-22-2009 11:59 AM

My mom has Celiac disease and im glad you said somthing because she is concidering going cg, and she is going to want me to get all of the stuff for her, and she is not as "on top of what ingredience she consumes" as you are. soooo as i am geting stuff for her i will have to keep this in mind.
Thank you agian for this post!! :toothy8:

Draakje 12-22-2009 12:23 PM

Are you sure that gluten contact with the skin is the issue here? As far as I know, celiac disease is a contactdisease of the small intestine. Some celiacs can have skin symptoms, but this is all related to the small intestine.
It is also kind of unusual that gluten remain in oil. I would not advice to eat it, but I doubt GPB is that tasty... :laughing9: There should be very, very little gluten in the amount you would use (small amount of oil, small amount of gluten if any). "Gluten free" products can also contain small amounts of gluten, or at least in Europe that is the case (regulated by law). This is because lower doses don't create symptoms. I disagree with this law, though, because no symptoms =! no damage.
Finally, you never had a reaction to it before.

You might want to reconsider where your symptoms came from?! Since your immune system is also effected by the intestines, you are more sensitive to "real" allergies.

I might be dead wrong, this is just what I know of celiacs and I wanted to help :)

buttrflys 12-22-2009 01:34 PM

I hear you Draakje, and actually I always thought the same thing about gluten, which is why I didn't pay much attention to my hair products. But I called my Doctor this am after having the reaction, and she stated that what I had was a form of dermatitis associated with "contact with gluten". She also told me that whether we like it or not, we do somtimes injest our hair and body products (not on purpose, I hope, lol) so anything is really possible.

Not really sure if this morning was a result of injesting or just contact, but I definitely will not be using that conditioner again!

oddityofwings 12-22-2009 01:41 PM

If you want to be sure, do a skin patch test - try putting a teeny bit of GPB on a patch of skin, and leave it there for a day or so (under a band-aid/plaster). If you're allergic to it, you'll either know right away, or you'll notice a localised allergic reaction. :) If not - you're safe to use it.

pe476206 12-22-2009 01:52 PM

I have celiac disease but make sure that you have test done. I loss weight before I was tested. You need to be careful with products for skin, hair, diet, etc. You cannot tell if you are gluten intolerance or celiac disease, because the symptoms are similar. I have the exact same symptoms as gluten intolerance. The diet is not bad but is expensive. They do two test. The first test in very inaccurate, but the second test is very accurate.

buttrflys 12-22-2009 01:53 PM

Thanks oddityofwings, I may try that, but I'm a little scared :( The reaction this moring was awful, it felt like a combo of sunburn and poison ivy!

The official name by the way is called Dermatitis Herpetiformis and one of its trademarks I guess is that it tends to affect the knees and elbows and any other areas symetrically.

There is unfortunatley ALOT of misinformation about celiac and gluten, and as Draakje mentioned, misprinting of whether foods contain gluten. McDonalds for example had always claimed their fries were gluten free, then a few years ago they had to retract it and say "ooops it has gluten".

Anyway, some research suggests that Dermatitis Herpetiformis can be caused by touching gluten, and other research says in "rare cases" so maybe I am a rare case...

Thanks for letting me babble :toothy8:

pe476206 12-22-2009 03:01 PM

If you have a reaction from the product that says gluten free, and have a reaction you can sue the company. Your health is important, but unfortunately heared about some cases. My mom is in the health field and manage to diagnose me. Any site that is org, edu, or gov is a reliable site. I did a speech on gluten intolerance, and disease that are similar. You can find alot of accurate information. All about the reactions to gluten is new. Even doctors overlook possible reactions to gluten. It is hard to diagnose anything with gluten, because gluten is a hard substance to digest. You will win if you have enough prove. Anyways always read the box even if it says gluten free. I read that 80 % of patients with dermatitis herpetiformis also have gluten enteropathy, which is the most common type of coeliac disease. It is not similar to celiac disease because of the symptoms. They have two different symptoms. The symptoms of Dermatitis Herpetiformis may perceive have red bumps and blister. The symptoms of intense burning, stinging and itching cannot be overemphasized. It is common for DH lesions to be symmetrically distributed on the extensore surfaces of the body: over the elbow,knees, buttocks, scalp, posterior, neck, sacral (lower end of the spinal column) and shoulder areas. The face and facial hairline are occasionally affected. And rarely, the lesions occur within the mouth. Although its severity may vary, it persists indefinitely and is a lifelong condition. There are only a few patients in whom the disease remits for long periods of time. Sorry the post was so long, but hope it helps. Also it might not be Dermatitis Herpetiformis after talking to my mom.

buttrflys 12-22-2009 05:35 PM

Wow, thanks for all that info pretty in curls!
Have you ever had a reaction to gluten in hair products?

pe476206 12-22-2009 08:06 PM

No, but that never mean I will. I am very careful on the products that I use. I might end up using a product one that that has that ingredient, if the ingrediences change. As far as I understand not everyone with celiac disease will have possible reactions.

Zinnia 12-22-2009 09:15 PM

Here is a gluten free line of products that a curly here uses.

pe476206 12-23-2009 01:21 PM

Quote:

Originally Posted by pretty in curls (Post 1204139)
No, but that never mean I will. I am very careful on the products that I use. I might end up using a product one that that has that ingredient, if the ingrediences change. As far as I understand not everyone with celiac disease will have possible reactions.

Today I went to get my nails done and came out with a itch rash. I am wondering if the product had gluten in it or not? I also take vitamin which seem to help for me. I am very careful, but I might have a skin reaction because I have sensitive skin.
I was first diagnose two years ago, and celiac disease runs in my family. My mom watches out for gluten now that I am on college break. At school, it is hard to avoid all gluten, and normally eat salads. I was in high school when I was diagnose.

eklecktika 01-11-2010 06:14 PM

My son and I both have celiac.

The Codex Alimentarius does allow up to (I believe) 20 ppm, but that amount CAN and DOES trigger reactions in some folks.

It's all a matter of how sensitive you-or more accurately, your immune system- are.

Some folks, like me, can handle touching it (good thing, as I work in a grain warehouse!), but can NOT ingest it, while others can't even touch it.

DH, if truly DH (meaning biopsied and verified for the IGa antibodies) is ALWAYS gluten-caused. There are Rx's for it, but that's masking the true cause (as are most other Rx's, but that's another soapbox:angry5:)

Neither my son or I had the classic symptoms, he had failure to thrive, anemia, growth delay, and chronic, severe constipation....I just had autoimmune thyroid/adrenal issues. After testing through enterolab for immunoglobin though, we're both positive. Docs were worthless-I was an 'overanxious mother'-right up til I pulled him off gluten and he went from being below the 3rd percentile in height and weight (having not gained any weight from age 16 mos to 27 months) to being in the 10th for each after about 9 months gluten free.

Anyway. www.celiac.com is awesome, and there are a bunch of blogs with good recipes, etc. It's my opinion, from experience, that anyone with persistent anemia should trial a gluten free diet for about 8 weeks to see if they feel better.

My .02! :happy7:

rudeechick 01-11-2010 06:25 PM

This thread is a great service!

I was (mis)diagnosed with celiacs about 3 years ago, so I am fairly well versed on what to avoid ingestion-wise but this was a surprise.

I'm glad you figured it out right away!

yennimarie 10-19-2012 07:34 PM

Quote:

Originally Posted by Zinnia (Post 1204185)
Here is a gluten free line of products that a curly here uses.


I have issues with allergies (corn, which can be found in pretty much anything..and I was positive on gluten and dairy through Enterolab) and have been using this line for many years. I CO wash with their conditioner and use it as a leave in.

Been making flax seed gel for styling product. Works well. :)

(I "cheat" and use Devacurl No-Poo when I feel I need a "bigger" clean (contains wheat), but I could probably get away with adding chia seeds or sugar to the conditioner and clean my scalp that way instead.)

MojoDojo 10-19-2012 11:37 PM

I've been diagnosed as Celiac.... but mine's not skin sensitive (I also have a fairly low sensitivity to gluten, but so does my grandmother who I inherited it from).

But yes, there are some Celiacs with skin contact symptoms. It's an auto-immune disorder and can affect more then just the intestinal tract.

kleinehexe 07-03-2013 06:23 PM

I also have celiac. I can touch gluten but I get sick from inhaling it as well as ingesting it (of course). I can use a product with gluten only if it will be rinsed well from my hair. I have a habit of putting my hair in my mouth so I don't want gluten from my hair or hands to get in my mouth. I cannot do any spray product with gluten.

I also suffer from dermatitis herpetiformis if I ingest or inhale gluten. It is not pleasant. So for the most part I look for gluten free products.

curlytwirlykate 07-03-2013 08:38 PM

Quote:

Originally Posted by kleinehexe (Post 2187148)
I also have celiac. I can touch gluten but I get sick from inhaling it as well as ingesting it (of course). I can use a product with gluten only if it will be rinsed well from my hair. I have a habit of putting my hair in my mouth so I don't want gluten from my hair or hands to get in my mouth. I cannot do any spray product with gluten.

I also suffer from dermatitis herpetiformis if I ingest or inhale gluten. It is not pleasant. So for the most part I look for gluten free products.

I'm glad that this thread got started again... I was going to bring this up eventually.

I'm also celiac, but on top of that I have both wheat and soy allergies. Two very different things, and the wheat allergy is very contact based!

My question to you curlies is this: is there something similar to the Aubrey Organics Protein Balancing Conditioner that doesn't have wheat germ oil or hydrolyzed wheat protein? I'm specifically looking for a lightweight, natural, protein-rich conditioner that doesn't have wheat or soy.

Any ideas?

Firefox7275 07-04-2013 06:29 AM

It would be worth running an advanced search, there was a thread on wheat recently and likely it wasn't the first. http://www.naturallycurly.com/curlta...t-protein.html

My response
"Because it's cheap and vegetarian - plenty of people don't eat one meat or another for religious or ethical reasons - wouldn't surprise me if it's made from wheatgerm left over from making white flour.

I don't know if you can purchase it where you are but Schwarzkopf Gliss (Kur) Ultimate Volume conditioner has hydrolysed protein but it's keratin and collagen, ditto Mill Creek biotin conditioner.
Mill Creek Biotin Conditioner -- 16 fl oz - Vitacost
Adee Phelan and Schwarzkopf Gliss Hair Repair Ultimate Volume with liquid keratin Conditioner | Curly Hair Forum by British Curlies
"

You could consider sourcing a grain-free, gluten free protein filler or some gelatin and doctor small batches of other conditioners.

A final option if there is a group of you is to band together and contact a small company that you know manufactures their own CG friendly products in small batches - an Etsian, Spiral Solutions or Komaza Care for example - and ask for a grain/ gluten free hydrolysed protein conditioner.


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