Curlies with Gluten sensitivity or intolerance

buttrflys · 12-22-2009, 09:25 AM

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, 10:59 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!!

Draakje · 12-22-2009, 11:23 AM

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...

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, 12:34 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, 12:41 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, 12:52 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, 12:53 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

pe476206 · 12-22-2009, 02:01 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, 04:35 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, 07:06 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, 08:15 PM

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

pe476206 · 12-23-2009, 12:21 PM

Quote:

Originally Posted by pretty in curls

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, 05:14 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

)

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!

rudeechick · 01-11-2010, 05:25 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, 06:34 PM

Quote:

Originally Posted by Zinnia

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, 10:37 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.