Dr. said shampoo shouldn't affect gluten intolerance???

beks · Joined: 27 Feb 2007 Posts: 2

Hi ~ I am new and am trying to understand all the information.
I have what I think is DH on my scalp. They are pimple and boil like bumps that get much worse when I am using any shampoo with any kind of wheat product in it. However, it does not really ever itch. I found out what DH was when I googled scalp problems after I started suspecting a gluten intolerance due to gastric problems. I was amazed at how many people on the DH forum described my scalp problem exactly. I had a recent bout of the scalp problem that was severe. I had been using a new shampoo for about a month along with new hairspray. After reading about DH and CD I ran upstairs to look at the labels. Sure enough both products contained wheat and one of them had two different types of wheat product in it. I have sinced stopped using them and my scalp is almost healed. However, I went to the GI for the first time today to discuss Celiacs and ask for the blood tests. I left extremely upset and of course burst into tears after I got in the car. I was told by the GI (after he laughed with his PA) that shampoos and external products wouldn't be a problem unless ingested I then asked him directly "You mean if you have Celiac's you don't have to worry about lotions, shampoos etc...that contain wheat/gluten products." He replied that it was a matter of an internal problem not external. And acted like the scalp problem was totally unrelated. He spent less than a minute with me. His PA had already requested the tests. I questioned the nurse what was the difference between an IgA and a complete Celiac Panel which was written on the lab form. She didn't know and I went down to the lab to get the test. I was shaken up by the doctors attitude and couldn't think straight until I got to the Lab for the testing. I then had the lab call back up to the Dr's office and find out what the difference was ~ no one knew ~ so I requested to get the complete panel. The doctor apparently said it wasn't necessary but I was insistant with the nurse in a very polite way and after she put me on hold she came back to tell the lab to do all the test. I know it may be typical to just do the initial screening but I am positive gluten is my problem. I have so many of the symptons and have for years and I am getting worse so I just want to get the DX over with and start becoming GF! Is it worth it for the diagnosis? It sounds as if the lab enterolab may be the better option even if it is expensive. Everything I read on the post inidcates most of the Doctors are so ill infomed about CD and usually end up being mean and dismissive. I can only imagine what people did before these forums and the internet. Thanks for any response and thank you for your stories. ~ Sorry this was so long.
Blessings,
beks

nancw · Joined: 04 Oct 2006 Posts: 909 Location: Denver, CO

Hi Beks,
Wow - what a horrible experience! I promise you won't be treated like that here, and *way to go!* standing up to that ridiculous doctor. I only have a moment, but wanted to welcome you and encourage you to keep on reading. Others here will no doubt go into detail on the difference between DH & CD, and yes they are distinct diseases but both are treated the same way: living gluten-free.
There are lots of good reasons to get a firm dx. You will have your answer, or the beginnings of it anyway, when you get your blood results.
Hang in there, and yes, what did gluten intolerants do before the internet?

Topher28 · Joined: 20 Aug 2006 Posts: 30 Location: NJ

I'm sorry you had a rough doctor visit. Sometimes it's frustrating when doctors don't take us seriously, because they only have to deal with our problems for 5 minutes.

In theory, gluten intolerance IS an internal thing, and the gluten only hurts us when it's ingested. That said, most people avoid all products with gluten, like shampoo and lotion. This, however, is mostly to avoid the product accidentally getting in their mouths, like shampoo in the shower.

I'm pretty sure that skin contact with gluten alone can't cause skin issues; at least that's my opinion, because it's a systemic condition and response. But perhaps, at least in some cases, it can cause a reaction.

Either way, your doctor should recommend not using shampoo with wheat in it. Good luck figuring stuff out!

-Chris
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Somebody told me that this is the place
where everything's better, everything's safe

Eeyorific · Joined: 13 Mar 2005 Posts: 812

Beks,

Welcome to the board.

Well done on both the self educating, and standing ground with the doctor!
Hopefully, they did run the whole panel. Please come back and share the results.

I hope you feel better soon!
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Kristie M.

"The truth of God's love is not that he allows bad things to happen....
it's his promise that he will be there with us when they do!"

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1499 Location: GF Kitchen

I admire your spunk for standing up to the dr! I hope that you get clear answers to the blood testing.
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HadassahSukkot · Posted: Thu Aug 23, 2007 6:32 am Post subject:

I will definitely suggest you find a different shampoo, and see if your problem clears.

I have BAD topical reactions to gluten now... I don't know if it is DH or what, but it is an awful rash and looks like what we used to call "sweat blisters" back home.. just way tinier.

I have removed all wheat containing products, and I live above a bakery. the worst "outbreak" I had was when I went downstairs to sign for a package in the bakery and used their pen, and put my bare hand on their paper to sign my name (per law if you miss a package, you have to show your Ausweis - for me that means my passport with the ausweis in it, and sign for the package in person at the post office)...

The "blister rash" was on my left hand where I touched the paper, and on my right hand, where my hand touched the pen.

Awesome! I need to invest in wet wipes and handkercheifs from now on.... maybe even gloves Sad

The hairspray that was used during my wedding contained wheat, and I had a BAD bout with psoriasis on my head that would not go away. I finally got rid of it, but it took two months Sad

People thought I wasn't washing my hair properly, but DH saw that I was and even helped once when I was really feeling sick...

I'm sorry to hear your doctor gave you such a hard time. I hope you find the answers you are looking for!
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forinajoy · Joined: 01 Aug 2006 Posts: 219 Location: Texas

Good for you standing your ground with the Dr., nurses and lab tech's! Very Happy

whether or not an official diagnosis is necessary is a personal choice...the gold standard medically is a biopsy...the gold standard with most people is how you feel after going gluten free.....

Let me ask you a question... are you able to wash your hair without getting even a tiny amount of shampoo in the vacinity of your mouth? I am not able to do that and have never figured out how to do it without ANY contamination! So from that standpoint alone, I feel that celiacs should avoid shampoo with gluten...

Also, I have a neighbor who has CD in the form of DH, and from what I understand, when you have DH, you cannot have any skin contact with gluten....I am sure that AL will pipe in here soon and pull up a thread on the subject...

hang in there and I hope that you will get to feeling better really soon. In the mean time, peruse the recipe section
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Connie, mom to Ina, 13 y/o with CD

HadassahSukkot · Posted: Sat Aug 25, 2007 3:19 am Post subject:

digmom1014 · Joined: 18 Jan 2008 Posts: 34

Hi-

I agree with folks about the bumps-feel like ingrown hairs. (since they are on your head, maybe they are!) Today, after washing my hair, I had a burning sensation and a constant annoying headache all day.

My question is; does anyone use an inexpensive GF shampoo? I also need a conditioner, that controls frizz. (every since we moved down here, NC, from Chicago-my very straight hair curls in the summer)

Sarah

forinajoy · Joined: 01 Aug 2006 Posts: 219 Location: Texas

Many Suave shampoos and conditioners are GF....You will need to call the manufacturer on a specific product....I use Suave "blueberry smoothers" on Ina with no problem, it is a shampoo and conditioner combination....she has very fine and curly hair that gets really damaged in the summer when she swims and this product is the best that I have found to help with the tangles and frizzies and straw like effect that chlorinated pool water causes... but it is a childs product....however, there are no laws to keep an adult from using it Very Happy

....
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Connie, mom to Ina, 13 y/o with CD

sarahceliac · Joined: 18 Jun 2006 Posts: 189 Location: MA

That just blows my mind that the Dr. was brushing this issue off and even chuckling about it!! It is sad to say that many Dr's are just not informed about CD, but it is becoming such a common thing now, they are learning with time.

I know first hand that the wheat in shampoos, body wash, and face wash do....... have effects on us. I could not figure out why my head and neck were so... itchy until I looked at the lables a 2nd time. It was something contained in another ing. which I had missed! No more itchy neck/head when I stopped using them. And even my shaving cream!!!
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Sarah

luvscowznh · Joined: 23 Dec 2004 Posts: 327 Location: Groton, MA

Doctors can be very uninformed about Celiac. I had to go to 2 different doctors before I found my current nurse practitioner who knew within the first meeting that I probably had Celiac. Blood tests and biopsies confirmed it.

I have always had issues with tiny blisters under my skin - especially on my hands. I was working in a computer lab with some of my coworkers a couple of weeks ago and used the mouse on one of the test computers. After that, my thumb and forefinger broke out in a bunch of these blisters. My theory - they had sandwiches for lunch on the same table then touched the mouse. Since it was really hot in the lab that week, my skin was more open and got glutenated. I am still trying to get my fingers to clear up. I need to wipe down my laptop to make sure I get rid of any residual gluten.

After my initial bout with DH several years ago, I have eliminated ALL gluten from my daily life. I read all beauty products, I get GF paper products (some paper products use gluten to bind the fibers together - I got sick after microwaving safe food on a paper plate...), and I use GF band aids. (After my DH test, you could see a red outline of the non-gf band aid after I took it off....I also found out I am allergic to topical anti-biotics...)

I wish you the best of luck with your current doc. If his attitude doesn't change, switch docs until you find one that knows about Celiac or is at least willing to learn. Someone might be in you area to recommend a good doc. And just because someone is a doctor doesn't mean that they know more about your body and how it reacts to things better than you do.

Good luck, Beks!!

--Manda
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