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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Itching Worse In The Evening?
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18 posts in this topic

My DH is gradually (very gradually) resolving on a gluten-free diet. I do still have lesions that are in various stages of healing. More often than not, they blister again before they heal. Lately I have noticed that I wake up fairly comfortable. They are flat, not itching, and look like they are going to heal. Then by the evening they are raised up and bumpy looking and very itchy. Has anyone out there experienced this?

I don't routinely eat the same thing every evening or anything like that. I have even tried eating dinner in the morning and breakfast in the evening and still the same thing happens. I am strictly gluten free, iodine free, NSAID free and have eliminated any gluten in my toiletries so I am 99% sure I'm not getting contaminated. If I don't prepare it, I don't eat it. The dog is even eating a gluten-free diet!

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My DH is gradually (very gradually) resolving on a gluten-free diet. I do still have lesions that are in various stages of healing. More often than not, they blister again before they heal. Lately I have noticed that I wake up fairly comfortable. They are flat, not itching, and look like they are going to heal. Then by the evening they are raised up and bumpy looking and very itchy. Has anyone out there experienced this?

I don't routinely eat the same thing every evening or anything like that. I have even tried eating dinner in the morning and breakfast in the evening and still the same thing happens. I am strictly gluten free, iodine free, NSAID free and have eliminated any gluten in my toiletries so I am 99% sure I'm not getting contaminated. If I don't prepare it, I don't eat it. The dog is even eating a gluten-free diet!

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I find that my DH is always itching more in the evenings and I think I have seen others on this site that say the same thing. I don't have an answer as to why this happens but for me it is always worse in the evenings.

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In my experience, everything is worse in the evening. You're tired and your body can't fight back as much.

I don't have DH but I have had crazy full-body itching in the past (strawberry allergy) and it was always, always, always worse in the evening.

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Hopefull, your experience you outlined almost exactly matches mine.

Stinging is almost always worse in the evening and that was more pronounced when the lesions were worst. During the day, and at night, I barely noticed the stinging.

Also, I am on a very strict diet and have a lot of confidence that I'm not getting gluten from my diet. The lesions are mostly healed, and sometimes get very close to disappearing, then the skin breaks down and a sore remains. This cycle seems to have more to do with fatigue, stress, etc than diet but it is hard to tell.

Sometimes when I've had a really great, long relaxing sleep the sores almost disappear, then begin to sting again during the day.

BUT, I've notice that slowly things are getting better. I wonder if they will ever actually disappear completely.

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You can add me to the list! It is healing very nicely (one year later) but it will still starts to bother me at night!

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My DH is gradually (very gradually) resolving on a gluten-free diet. I do still have lesions that are in various stages of healing. More often than not, they blister again before they heal. Lately I have noticed that I wake up fairly comfortable. They are flat, not itching, and look like they are going to heal. Then by the evening they are raised up and bumpy looking and very itchy. Has anyone out there experienced this?

I don't routinely eat the same thing every evening or anything like that. I have even tried eating dinner in the morning and breakfast in the evening and still the same thing happens. I am strictly gluten free, iodine free, NSAID free and have eliminated any gluten in my toiletries so I am 99% sure I'm not getting contaminated. If I don't prepare it, I don't eat it. The dog is even eating a gluten-free diet!

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Hopeful,

I, too, experience itching and burning worse in the evening and sometimes nothing during the day and only in the evenings.

This week I developed a blister/lesion on my face and it's depressing me. I've had this condition for 4 years and only once or twice developed something on my face but it never lasted more than a day and never left a scar or bump. This one is acting like some of the lesions on my body and it is awful. I hope it will go away and not leave a scar.

I want to ask you if you think I should stop using the hair dye I use because it has wheat protein in it. I have been (as far as I know) completely gluten free for 5 months now and although my digestive system is doing considerably better my skin is not improving more than the initial improvement which was that I no longer wake up in the middle of the night feeling like my skin is on fire. I can sleep but I get an outbreak once a month really bad and it eases for a couple of weeks and then back again. So do you think I should quit the hair dye and check the other toiletries I use for gluten? Have you researched this and decided not to use toiletries with gluten because of researched data or just a hunch you have?

Thank you so much and I'm happy for you that you are beginning to improve. How long has it been since you started your diet?

I look forward to hearing from you,

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I've had this rash for over 7 years. Been gluten free for almost 9 months. Getting impatient!

I think most of the folks on this forum agree that gluten needs to be eliminated everywhere to avoid getting it in your system. I also have a comment on hair color. I worked in a hair salon for many years. I have seen people react to hair color all of a sudden after never having problems in the past. If you body is all wacko from the DH, it might be super sensitive and now is not liking your hair color. I would try changing the product to another brand (without the wheat stuff). Is it by any chance a red color? They are the worst for allergies. And here is another tidbit. If you have ever had a tattoo, you stand a better chance of reacting to red haircolor.

I'm curious to see what the others say about this.

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do u shower or bathe in the evening?? cause i always noticed HOT water totally making my DH worse

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I'm depressed about the fact that you are 9 months into this and still having lesions, sores, and burning at night.

My DH sores are on my face. They scar. It is distressing because I keep thinking if I am really good at avoiding gluten they will go away. But there you are 9 months in and still dealing with this.

I just had to stop taking Dapsone. I have about 10 lesions at any given time. Yes, every night the stinging itchin burning sensations start in. I will think the sores are healing and then they slough the skin off again and weep.

The site of lesions will appear to be healing and then just start up reacting again for no apparent reason.

I was hoping a few months would do it but it appears the 6 months to 3 years to heal statement must be true.

I feel for you.

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Hopeful,

I, too, experience itching and burning worse in the evening and sometimes nothing during the day and only in the evenings.

This week I developed a blister/lesion on my face and it's depressing me. I've had this condition for 4 years and only once or twice developed something on my face but it never lasted more than a day and never left a scar or bump. This one is acting like some of the lesions on my body and it is awful. I hope it will go away and not leave a scar.

I want to ask you if you think I should stop using the hair dye I use because it has wheat protein in it. I have been (as far as I know) completely gluten free for 5 months now and although my digestive system is doing considerably better my skin is not improving more than the initial improvement which was that I no longer wake up in the middle of the night feeling like my skin is on fire. I can sleep but I get an outbreak once a month really bad and it eases for a couple of weeks and then back again. So do you think I should quit the hair dye and check the other toiletries I use for gluten? Have you researched this and decided not to use toiletries with gluten because of researched data or just a hunch you have?

Thank you so much and I'm happy for you that you are beginning to improve. How long has it been since you started your diet?

I look forward to hearing from you,

Yes you need to stop using that hair dye. While gluten is not absorbed through intact skin if you have lesions you are keeping the antibodies going by using the hair dye or other topicals with gluten ingredients as it is entering your bloodstream through the open sores. I was lucky and my lesions healed pretty soon after I was finally diagnosed. But I was also super careful, some would call it paranoid, and avoided not just gluten in topicals and food but also in vinegars and alcohols. I should mention that for the first couple years even a small amount of gluten would flare the DH but after that I only get a couple little blisters when exposed.

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I've had this rash for over 7 years. Been gluten free for almost 9 months. Getting impatient!

I think most of the folks on this forum agree that gluten needs to be eliminated everywhere to avoid getting it in your system. I also have a comment on hair color. I worked in a hair salon for many years. I have seen people react to hair color all of a sudden after never having problems in the past. If you body is all wacko from the DH, it might be super sensitive and now is not liking your hair color. I would try changing the product to another brand (without the wheat stuff). Is it by any chance a red color? They are the worst for allergies. And here is another tidbit. If you have ever had a tattoo, you stand a better chance of reacting to red haircolor.

I'm curious to see what the others say about this.

Yes you need to stop using that hair dye. While gluten is not absorbed through intact skin if you have lesions you are keeping the antibodies going by using the hair dye or other topicals with gluten ingredients as it is entering your bloodstream through the open sores. I was lucky and my lesions healed pretty soon after I was finally diagnosed. But I was also super careful, some would call it paranoid, and avoided not just gluten in topicals and food but also in vinegars and alcohols. I should mention that for the first couple years even a small amount of gluten would flare the DH but after that I only get a couple little blisters when exposed.

Hopeful1950,

I use naturtint 4N, it's dark chestnut and it has wheat protein. I also use suave colorcare shampoo & conditioner daily which has wheat germ. No tatoos here.

Are you saying that even hair dye that does not contain gluten might be a problem? If yes, I'll just go gray. I NEED these itchy pimples (as my daughter calls them) to GO AWAY!

Ravenwoodglass,

I'm returning all of my stock immediately. I just stocked up last week and have no receipts :( Hopefully I will still be able to return them. I guess toiletries clean of gluten will be a forever thing too, just like eating gluten? I was hoping that once I heal, I will be able to go back to using gluten containing toiletries.

I've been on the diet for 5 months now. My digestive system is clearing up nicely, thank God, but my skin is lingering and I, too, am getting so frustrated, but my dermatologist told me it can take up to a year too. If the doc is saying up to a year I'm wondering if it can take longer too.

Hot water definitely causes flaring of the lesions. I try to take lukewarm showers & end my shower even a little coldish on bad days. I've told others on this site that my two methods for temporarily calming the itch is baking soda & ice. I either take a bath with baking soda or just make the area wet and rub on baking soda and then rinse with coldish water. It is a terrific solution, instead of scratching it to bleed.

I'm flying tomorrow to visit my new granddaughter and 2 yr old grandson (and their parents of course)and this is a first for me since I'm on the diet. I'm so nervous about the food issue, but I'm bracing myself and jumping in. I'm taking along lundberg rice cakes, & bakery on main gluten free granola bars (yum) & hard boiled eggs, and will buy tuna & mayo & fruits & vegetables over there.

praying for a full stomach while with my kids......:)

thank you for all your replies.

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I'm taking along lundberg rice cakes, & bakery on main gluten free granola bars (yum) & hard boiled eggs, and will buy tuna & mayo & fruits & vegetables over there.

praying for a full stomach while with my kids......:)

thank you for all your replies.

Be careful of the Bakery on Main Granola Bars as some of them contain oats. Some of us tolerate gluten-free oats okay but not all do. If you are still having any issues that are gluten related you may want to delete oats for a bit and see if they resolve.

Do drop the skin and hair products that have gluten ingredients. It may be what is keeping your itching active. And yes IMHO they should be dropped permanently. Garnier makes many safe products and so does Suave and Dove. Garnier will label clearly and I think they made the hair dye I used to use and never had a problem with, not sure though as it has been a while. If you have lesions on your scalp it would be a good idea to let them heal before dyeing your hair again even if the dye is gluten free.

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Be careful of the Bakery on Main Granola Bars as some of them contain oats. Some of us tolerate gluten-free oats okay but not all do. If you are still having any issues that are gluten related you may want to delete oats for a bit and see if they resolve.

Do drop the skin and hair products that have gluten ingredients. It may be what is keeping your itching active. And yes IMHO they should be dropped permanently. Garnier makes many safe products and so does Suave and Dove. Garnier will label clearly and I think they made the hair dye I used to use and never had a problem with, not sure though as it has been a while. If you have lesions on your scalp it would be a good idea to let them heal before dyeing your hair again even if the dye is gluten free.

I can not eat oats (proven after being gluten free for 6 months, but eating gluten free oat bread and not getting any better)but the bars I eat don't have oats. Do you think that I still should drop it because of possible contamination? I didn't think of this even though I knew that some of their bars contain oats. What do you think?

I don't have lesions on my scalp, but maybe I'll stop dying my hair for the time being, good idea.

I called the company that makes Dial soap bars on Friday and was told it contains no gluten and not contaminated either. I've seen comments about dial on this site about it being a problem, but I would think that if their customer service rep told me the above then it should be safe, I hope so anyway. What has been your experience with dial?

I'll check out the brands you mention, thank you so much. Does Suave label their shampoos etc. as gluten free because the one I was using has wheat germ oil.

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I can not eat oats (proven after being gluten free for 6 months, but eating gluten free oat bread and not getting any better)but the bars I eat don't have oats. Do you think that I still should drop it because of possible contamination? I didn't think of this even though I knew that some of their bars contain oats. What do you think?

I don't have lesions on my scalp, but maybe I'll stop dying my hair for the time being, good idea.

I called the company that makes Dial soap bars on Friday and was told it contains no gluten and not contaminated either. I've seen comments about dial on this site about it being a problem, but I would think that if their customer service rep told me the above then it should be safe, I hope so anyway. What has been your experience with dial?

I'll check out the brands you mention, thank you so much. Does Suave label their shampoos etc. as gluten free because the one I was using has wheat germ oil.

I haven't used Dial soap but I think it is a Unilever company and if so it should label wheat or oat ingredients clearly.

Suave does not label their products as gluten free but as you saw with the product you had been using they will tell you if it is in there. I like the Garneir products so much that they are all I use for hair and skin care other than a Jason Rose scented liquid soap that I even use as a shampoo if my hair is really dirty since I love the smell.

I have on occasion eaten the Bakery on Main products that don't contain oats but I don't eat them often enough to say for sure whether CC would be an issue. If you have any doubts the best thing to do is to drop the product for a month or two and then add it back in by eating it a couple times a day for a week and watching for a reaction.

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takeiteasy:

Yes, I have seen people react to a hair color after years of using it. And I have seen some reactions bad enough to send people to the ER with their face and head swelled up like a basketball. If you think you are reacting to the product stop using it. Wait a little while and try a different one. I recommend that you do the patch test before applying to your entire head.

eatmeat4good:

I know 9 months seems like a long time, but I was poisoning my body with gluten for at least 8 years before I figured out what this rash was. I probably have a lot of cells to clear out! I'm trying not to freak out until I have been gluten free for at least a year and 1/2 or so.

Regarding pre-packaged food: I have trouble with many of them because they contain salt which is likely iodized and that aggravates my DH. There is a bar (brand name KIND) that is sold at Starbucks and Whold Foods where I live. They are great. Many flavors. Mostly fruit and nuts. I always have a couple in my bag just in case.

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I haven't used Dial soap but I think it is a Unilever company and if so it should label wheat or oat ingredients clearly.

Suave does not label their products as gluten free but as you saw with the product you had been using they will tell you if it is in there. I like the Garneir products so much that they are all I use for hair and skin care other than a Jason Rose scented liquid soap that I even use as a shampoo if my hair is really dirty since I love the smell.

I have on occasion eaten the Bakery on Main products that don't contain oats but I don't eat them often enough to say for sure whether CC would be an issue. If you have any doubts the best thing to do is to drop the product for a month or two and then add it back in by eating it a couple times a day for a week and watching for a reaction.

You are probably right and I will do just as you suggest. I will miss those bars sorely as they were a terrific afternoon snack but as with everthing else I had to give up I'm sure I'll master this hurdle too. I'm at my children's/grandchildren ths week and I'm cooking dinners for all and not eating a thing, so I'm sure I'll be able to stay away from the bars :(.

I bought garnier shampoo and dove soap bar so I'm hoping to see results in the near future. I hope soooner than later because the itch is pretty bad now. I got them all over my back last week, something new. I never got any on my back in all the years that I've had this condition, oh well.

Again, thank you so much for your interest in helping me.

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takeiteasy:

Yes, I have seen people react to a hair color after years of using it. And I have seen some reactions bad enough to send people to the ER with their face and head swelled up like a basketball. If you think you are reacting to the product stop using it. Wait a little while and try a different one. I recommend that you do the patch test before applying to your entire head.

eatmeat4good:

I know 9 months seems like a long time, but I was poisoning my body with gluten for at least 8 years before I figured out what this rash was. I probably have a lot of cells to clear out! I'm trying not to freak out until I have been gluten free for at least a year and 1/2 or so.

Regarding pre-packaged food: I have trouble with many of them because they contain salt which is likely iodized and that aggravates my DH. There is a bar (brand name KIND) that is sold at Starbucks and Whold Foods where I live. They are great. Many flavors. Mostly fruit and nuts. I always have a couple in my bag just in case.

will do, thanks so much

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