Am Not Sure What Is Going On...

[momxyz]

I really wasn't sure what forum to post my query in because:

a. I do not have an official diagnosis

b. the symptoms that prompted me to go gluten-free weren't GI at all but an itchy itch rash

So bear with me. I went gluten-free in Aug 09 and found that by doing this, a persistent and itchy rash of 10 months duration started to subside. After months of trying various topical treatments, this seemed to be the answer. And, in the first two months, exacerbations following an intake of pasta on one occasion, bread on another, confirmed this, in my mind.

so the rash has continued to heal, and I have been having lots of fun in the kitchen, relearning how to cook. We even had a fairly successful holiday season. (my daughter is also fairly recently gluten-free)

So now in the last three and a half weeks, I have been notcing subtle reactivation of the rash, a few new spots cropping up, not the crazy bad itching, but itchy nonetheless.

I had been eating more oatmeal. I had not considered myself super sensistive, and hadn't had problems eating an occasional breakfast of oatmeal, from not necessarily wheat free production lines. but being winter, I had started eating more. I stopped for a week once I first noticed the new spots... I did have one breakfast with Bob's redmill gluten-free oatmeal this week but that's it.

Ok, my husband has been buying pistachios (NOT the red ones) from Sam's club the past two weeks, I haven't been able to stay away from those.

and, since new years, of course there is that post holiday grazing at work.... candy. I am a chocoholic and can't resist what's in my coworkers cubicles. I have limited myself to the hershey's spsecial dark bars... 1 or 2 a day but am wondering...

On top of the rash reactivation, I am finding - and this is new - that within a half hour of eating any meal, I have to "go" Not diarrhea but lets just say I am using the bathroom more often and "producing" more frequently.

Whats up with this???? what I have been doing I know is not entirely purist, but I had been able to get away with before this past month....

[Reba32]

I don't eat Hershey's chocolate normally, just because I dont' particularly consider it "good chocolate". However I have seen others here post that they have had reactions from eating Hershey's, and that possibly those "fun size" bars are not likely cross contaminated, even if the ingredients themselves do not contain gluten.

Are you using any body lotions, soaps or shampoos that may contain glutens that could be making the rash worse? I've recently noticed myself, that even though I don't have DH, that the psoriasis on my scalp can be made more itchy if there's wheat products in my soaps and shampoos. Plus my hands were being torn to shreds by the soap at work, so I stopped using it and I put a bottle of alcohol hand wash in the ladies room.

[momxyz]

I don't eat Hershey's chocolate normally, just because I dont' particularly consider it "good chocolate". However I have seen others here post that they have had reactions from eating Hershey's, and that possibly those "fun size" bars are not likely cross contaminated, even if the ingredients themselves do not contain gluten.

Are you using any body lotions, soaps or shampoos that may contain glutens that could be making the rash worse? I've recently noticed myself, that even though I don't have DH, that the psoriasis on my scalp can be made more itchy if there's wheat products in my soaps and shampoos. Plus my hands were being torn to shreds by the soap at work, so I stopped using it and I put a bottle of alcohol hand wash in the ladies room.

well, I have made no changes in any of my bath productss.. I have a pretty simple routine. I use Pantene shampoo and conditioner, and Loreal facial products.....

[boysmom]

I do know that the fun size bars usually come in a variety bag, including at least one variety with gluten krispies in it. If that's where yours come from it may just be a case of cross contamination that will clear up quickly once you quit eating those. I would suggest keeping a supply of safe candies handy, either in your purse or your cubicle, so when you're tempted you have easy access to something you can eat safely.

[Roda]

I can sympathize with you. It can be very aggrivating to try and find hidden sources of gluten. I have been on a hunt for awhile and changing some rules in the house. I think I am getting somewhere. I would not eat oats for awhile especially the non certified gluten free ones. Maybe even go without the gluten free ones to see if that helps. I miss oatmeal, I am envious of those who tolerate gluten free oats. As far as the chocolates, who knows what is on the wrappers from the other peoples hands. When you open them you could be getting contamination from the wrappers.

[GFinDC]

Whats up with this???? what I have been doing I know is not entirely purist, but I had been able to get away with before this past month....

Oh she's not pure! Everyone get around her in a circle and point! Not pure not pure! Nah Nah Nah! Eeew!

Just kidding!

I used to eat oatmeal every morning, had lots of neat ways to make it too. After a while I realized oatmeal wasn't liking me so much anymore. I tried the gluten-free oatmeal too and it didn't help. Some of us just can't do oatmeal it seems. So, it could be you developed a reaction to oatmeal now. I suggest you cut it out for a month or 2 and see if it helps.

[tatersalad]

well, I have made no changes in any of my bath productss.. I have a pretty simple routine. I use Pantene shampoo and conditioner, and Loreal facial products.....

Hi, thought you might need this...I was using Pantene too. Me, personally...I'm not taking any chances, even a small amount is not worth the risk for me.

Thanks for contacting Pantene.

We know Celiac is a serious disease, so we want to give you clear information regarding the use of our beauty care products. If wheat and/or gluten aren't directly added to a product by us, these ingredients won't be listed on our packages. Like many companies, we often purchase the scents for fragranced products from outside suppliers, and the components of these substances are proprietary information belonging to those companies. Therefore it's possible that a very small amount (generally parts per million) of gluten may be present.

We sought advice from physicians; they told us it would be very unlikely a person with Celiac disease would have a reaction from a trace amount of gluten coming into contact with his skin or hair. This is because wheat, rye, barley and/or gluten generally cause symptoms when they're ingested. Since our beauty care products are designed to be used externally on the skin, their use shouldn't be an issue for someone with this disease.

Since gluten sensitivity can vary among people, it would be best if you consulted with your physician about the use of all types of consumable goods, if you haven't already. You might even consider using one of our fragrance free products that doesn't list gluten or wheat extracts on the label.

Thanks again for getting in touch with us. I hope this response has been helpful to you. For more information about Celiac, you may want to check out Open Original Shared Link and Open Original Shared Link

John

Pantene Team

[momxyz]

Oh she's not pure! Everyone get around her in a circle and point! Not pure not pure! Nah Nah Nah! Eeew!

Just kidding!

I used to eat oatmeal every morning, had lots of neat ways to make it too. After a while I realized oatmeal wasn't liking me so much anymore. I tried the gluten-free oatmeal too and it didn't help. Some of us just can't do oatmeal it seems. So, it could be you developed a reaction to oatmeal now. I suggest you cut it out for a month or 2 and see if it helps.

Thanks for making me laugh!!!!

Guess its bye bye oats.....

[AKcollegestudent]

Oh, that information about Pantene's products is *special*. As someone who actually reacts fairly badly to fragrances in general, especially those that contain gluten, I'm so glad that I went off of Pantene after less than a week. And do they comprehend that if the fragrance contains gluten and the formula gets in our mouths--which it will eventually--there will actually be a reaction? (Besides, Pantene and my hair don't actually get along. My wavy hair kinks up and snarls when forced to put up with Pantene.)

I use sleek.look from Matrix now and haven't had any problems with it. Fair warning--it's about 60 dollars for about 5 months worth of shampoo and conditioner. But I also don't have a problem investing in expensive shampoo and conditioner if that's what it takes to keep my hair healthy. (And for the past 8 years, that's exactly what it's taken.)

[momxyz]

OK, the verdict has been returned....

my coworker with all the chocolate?? She's on vacation this week. This chocoholic is going thru a bit of withdrawal...and guess what. No more itching. (I've even had some of Bob's Redmill gluten-free oatmeal...)

Now to find some "safe" chocolate to stash at work....any tried and true suggestions?

[Gemini]

Oh, that information about Pantene's products is *special*. As someone who actually reacts fairly badly to fragrances in general, especially those that contain gluten, I'm so glad that I went off of Pantene after less than a week. And do they comprehend that if the fragrance contains gluten and the formula gets in our mouths--which it will eventually--there will actually be a reaction? (Besides, Pantene and my hair don't actually get along. My wavy hair kinks up and snarls when forced to put up with Pantene.)

I use sleek.look from Matrix now and haven't had any problems with it. Fair warning--it's about 60 dollars for about 5 months worth of shampoo and conditioner. But I also don't have a problem investing in expensive shampoo and conditioner if that's what it takes to keep my hair healthy. (And for the past 8 years, that's exactly what it's taken.)

The information that Pantene replied with is 100% correct. I don't know about you but I do not make a habit of ingesting beauty products. Why do you assume that these products will end up in your mouth? There are many, many Celiacs who do not screen their topical products, except for lip balms, and never have a problem. It is a choice issue and not mandatory to use gluten-free products on your skin, unless you have an additional allergy. People should not be given incorrect advice.

[ravenwoodglass]

The information that Pantene replied with is 100% correct. I don't know about you but I do not make a habit of ingesting beauty products. Why do you assume that these products will end up in your mouth? There are many, many Celiacs who do not screen their topical products, except for lip balms, and never have a problem. It is a choice issue and not mandatory to use gluten-free products on your skin, unless you have an additional allergy. People should not be given incorrect advice.

People may not need incorrect advise but as there are many of us who do react to topicals whether it be through accidental injestion or rinse water accidently getting into our mouths it is a good idea to let people know that it is possible for some of us to react. I am really glad for you and others that don't react but there are plenty of us who do. If someone is having issues and has eliminated all other possiblities of things that could be causeing a reaction it is not out of line at all for folks to suggest deleting gluten from all products applied to the body. For some of us it was the key to finally not having 'mystery' glutenings.

[jerseyangel]

For some of us it was the key to finally not having 'mystery' glutenings.

This really is true for a number of us. I have had GI reactions from topical products--no question. For the more sensitive, it does not take much--just a few molecules perhaps get into the corners of our mouths--and boom, we get sick. Personally, I choose gluten-free topical products because I don't want to have to worry about this every single time I step into the shower, apply lotion or cosmetics, etc.

I think the best advice for someone new, as regards this matter, is this: try not worrying about the gluten in topical products if you don't want to, and see how it sits with you. If you continue to have problems, try substituting with gluten-free products and see if that helps. There's no cut and dried answer to this--it really depends on your personal level of sensitivity.

[Takala]

OK, the verdict has been returned....

my coworker with all the chocolate?? She's on vacation this week. This chocoholic is going thru a bit of withdrawal...and guess what. No more itching. (I've even had some of Bob's Redmill gluten-free oatmeal...)

Now to find some "safe" chocolate to stash at work....any tried and true suggestions?

++++++++++++++++++++++++++++

Enjoy Life Chocolate Chips

Ghiradelli baking bars, but they have some soy lecithin, I think. Other than that, they're gluten-free

Some Lara bars have chocolate, the chocolate mint ones are good

So do a few special kinds of clif bars, read the labels

[Roda]

++++++++++++++++++++++++++++

Enjoy Life Chocolate Chips

Ghiradelli baking bars, but they have some soy lecithin, I think. Other than that, they're gluten-free

Some Lara bars have chocolate, the chocolate mint ones are good

So do a few special kinds of clif bars, read the labels

I just had over valentine's weekend, some strawberries and gluten-free pretzels all dipped in Ghiradelli chocolate. The store had 2/ $5.00 on the bags of milk chocolate chips. I melted it in a double boiler and made myself and the kids a special treat. I had some left so I stirred in some whole almonds and spread it out on waxed paper to cool. I broke it into chunks to snack on later. Very tasty. You could do that and keep it in a container at work!

[momxyz]

I just had over valentine's weekend, some strawberries and gluten-free pretzels all dipped in Ghiradelli chocolate. The store had 2/ $5.00 on the bags of milk chocolate chips. I melted it in a double boiler and made myself and the kids a special treat. I had some left so I stirred in some whole almonds and spread it out on waxed paper to cool. I broke it into chunks to snack on later. Very tasty. You could do that and keep it in a container at work!

Cool! I hope they make dark chocolate as well as the milk!!

[boysmom]

Cool! I hope they make dark chocolate as well as the milk!!

If you like dark chocolate, we've used both Ghirardelli and Lindt dark chocolate bars (from the candy section, not the baking) and had no problems. We usually melt them to use in a cake, but they're good just on their own too. I will qualify my recommendation by saying I bought them based on my reading of the ingredients and the fact that I haven't reacted to them so far, but I have not contacted the company to ask about potential cc. I do react to Lays tortillas and other sources of cc, so...