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Help Please - Is This Dh? Nasty Rash On My Lips

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Try to make this short and to the point...

The summer before I was diagnosed my lips were a mess, all broken out with a rash that looked just like a little kid that had been licking their chapped lips. It finally just went away. Then about three months after I was diagnosed it came back. My lips become embarrassingly red and inflamed for a couple of weeks then heal up, go back to normal only to break out again.

I have been gluten-free for 21 months now and my lips still keep breaking out with the red rash badly chapped lip look.

My skin care products are all gluten-free, I have changed products in case that was the problem, thought it might be hair spray so I wore a mask when spraying, used Burt's Bees then stopped cause thought it might be the soy, our home is 98% gluten-free (my son has a bowl of cereal now & then). I am at a loss as to what to do. The dermatologist is not celiac knowledgeable and not much help.

Everything I have read says that you don't break out with the DH if you are gluten-free. So that leaves a skin allergy? I have kept a food diary but can't find any correlation between any foods I ate before going gluten-free and now. Hoping someone has some advice. Thanks!

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Have you checked make up? Sunscreens? Toothpaste?

My skin doesn't like xanthan gum (E412) so you might want to check for it also.

It sounds like a classic food allergy reaction. My sons face was like that a couple of weeks ago. I suspect wheat but we are still working it out. You might want to consider having a week or two on a very simple diet of fresh meat/veg then reintroducing one food/drink/product at a time. Have you had thorough allergy testing?

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Are you careful to avoid iodine? If what you have on your lips is actually DH, you need to eliminate BOTH gluten and iodine. Iodine can be found in iodized salt, salty products (such as crackers, chips, and fries), seafood, asparagus, and sometimes dairy products (depending on where you live).

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You can't eliminate iodine completely, except for a short duration, since it's a necessary nutrient. But you could try it for a few days and see if it helps (there's a list of high-iodine foods as well as recipes from www.thyca.org )? And if that helps, you can certainly reduce it in the future. Unless you've already done that.

I was also going to comment that the food diary doesn't necessarily need to correlate with things you ate prior to going gluten-free, but just see if there's some correlation before you have the rash break out. Particularly things you ate anywhere from a few minutes to about 2 days before the rash. There may be a pattern.

They do say it can take 2 years for DH to heal after going gluten-free, but you're pretty close to that, so if it were that it should show some improvement I think... I also had the idea that perhaps it's from physical contact (kissing) from someone else who has consumed something gluten-y ?

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You're sure it's not cold sores (herpes simplex 1)?

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Vitamin B complex may help.

Vitamin B deficiency can cause skin/lip problems.

Try supplementing and if this is what it is it should go away in a fairly short time.

If it is DH, you may have to use the low iodine diet from thyca mentioned above.

Eggs and dairy cause my DH to flare due to the iodine content...but a few days of elimination was not enough for me to clear my skin. It took months. But it did work eventually.

Anytime there is the slightest trace of gluten you can get a reaction of DH for several weeks. That is what happens with my skin. I hope this helps.

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Try to make this short and to the point...

The summer before I was diagnosed my lips were a mess, all broken out with a rash that looked just like a little kid that had been licking their chapped lips. It finally just went away. Then about three months after I was diagnosed it came back. My lips become embarrassingly red and inflamed for a couple of weeks then heal up, go back to normal only to break out again.

I have been gluten-free for 21 months now and my lips still keep breaking out with the red rash badly chapped lip look.

My skin care products are all gluten-free, I have changed products in case that was the problem, thought it might be hair spray so I wore a mask when spraying, used Burt's Bees then stopped cause thought it might be the soy, our home is 98% gluten-free (my son has a bowl of cereal now & then). I am at a loss as to what to do. The dermatologist is not celiac knowledgeable and not much help.

Everything I have read says that you don't break out with the DH if you are gluten-free. So that leaves a skin allergy? I have kept a food diary but can't find any correlation between any foods I ate before going gluten-free and now. Hoping someone has some advice. Thanks!

I cant use Burt's Bees. It doesnt sound like DH, but I can not use Burts Bees pomegranite on my mouth. It does the exact opposite of what I want it to. It makes my lips get bright red, chapped, and peel.

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Thank you for all of your suggestions. Sorry to not acknowledge your responses but I started back to work part time and find myself falling asleep on the couch embarrassingly early! ;)

I have not had an allergy testing and believe that is what I am going to push for. I only wear some eye make-up and face cream is gluten-free so it can't be that. I had not thought of iodine but will start checking for that.

I did see a dermatologist who really knows nothing about celiac. She wanted me to take steroid shots and I said no. I don't want steroid shots when we have no clue what it is! She did give me some cream which I haven't picked up yet as pharmacy is checking on the gluten-free status. Looks like I will be starting with cutting out foods and trying that.

Thanks! :)

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Try to make this short and to the point...

The summer before I was diagnosed my lips were a mess, all broken out with a rash that looked just like a little kid that had been licking their chapped lips. It finally just went away. Then about three months after I was diagnosed it came back. My lips become embarrassingly red and inflamed for a couple of weeks then heal up, go back to normal only to break out again.

I have been gluten-free for 21 months now and my lips still keep breaking out with the red rash badly chapped lip look.

My skin care products are all gluten-free, I have changed products in case that was the problem, thought it might be hair spray so I wore a mask when spraying, used Burt's Bees then stopped cause thought it might be the soy, our home is 98% gluten-free (my son has a bowl of cereal now & then). I am at a loss as to what to do. The dermatologist is not celiac knowledgeable and not much help.

Everything I have read says that you don't break out with the DH if you are gluten-free. So that leaves a skin allergy? I have kept a food diary but can't find any correlation between any foods I ate before going gluten-free and now. Hoping someone has some advice. Thanks!

I'm a new member, and newly diagnosed, so I don't know a lot yet, except what I've read and experienced, but I have the identical lip thing.  It happens to me when I eat sugar.  I originally thought it was gluten, but having eliminated all glutens, 100%, even the cat's food!, I'm still having it from time to time.  It happens when I eat sugars of any type, whether natural fruit sugars or lactose from dairy.  The most recent bout was after eating 3 Cocomels, gluten free caramels from the Gluten Free Mall - so you know there's no gluten in it!  Also happened 2 weeks ago when I had, seriously, no more than 3 teaspoons of Talenti tahitian vanilla gluten free gelato.  Before that it was Virgil's all natural cream soda.  So, look into sugar.  I feel your pain.  Isn't this a nuisance?!

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It might not be your lip stuff or make up at all--it could be something else your lips are coming in contact with too, not sure what though :D--or a food allergy.  Do you have photos you can post?  That might help someone identify what is going on.

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