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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, But Not Eczema, Or Dh, Or Shingles,....
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36 posts in this topic

One of the main reasons I was not that surprised when I was diagnosed (via biopsy) with Celiac Disease is that one of my worst symptoms was itchy skin. This was primarily in the winter, and there is never any sign of a skin ailment, other than the marks I leave from scratching that burning, itchy skin.

No dry skin --believe me, I have tried lotions and ointments and antihistamines....

There is absolutely no sign of any skin rash or blisters or anything!! But I itch and it feels like it's on fire.

This is happening right now and has been going on for 48 hours at this point.

I do not know whether to call the gastroenterologist or the regular physician.

It's driving me crazy! Is this part of the celiac disease?

Have I been gluten-ed and not realized it?

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You may be sensitive to iodine. Do you take a thyroid medication (which would, of course, contain iodine). It took me years to stop itching, but, unfortunately, I'm sensitive to iodine because of the celiac disease....and the itch was incessant, since I couldn't stop taking my medication.

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This is going to sound really stupid, but it is actually possible to be allergic to the cold. No, as dumb as that sounds I'm not making it up. I would certainly go see a doctor. I'm sure there are a lot of possibilities.

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This is going to sound really stupid, but it is actually possible to be allergic to the cold. No, as dumb as that sounds I'm not making it up. I would certainly go see a doctor. I'm sure there are a lot of possibilities.

Yes, it is possible to be allergic to the cold - my hubs is. But he gets real evidence of it - huge welts like humongous chilblains all over.

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Yes, it is possible to be allergic to the cold - my hubs is. But he gets real evidence of it - huge welts like humongous chilblains all over.

That would make me criminally insane. I was under the impression it is one of those "your reaction may vary" sort allergies where some people are like your husband and others only itch enough to appear crazy. I have been known to be wrong. I know more about the whole being allergic to water thing. (Which is equally stupid and crazy.)

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I could 'buy' allergic to the cold, but I don't believe that to be my problem. Although wearing more layers of clothing to keep warm enough may have a little to do with this, in my opinion.

As for allergic to water --lord only knows what may be in the water!! any place and every place. Where I live the water that comes out of the faucets has been through the water "treatment" processing plant of the community and it sometimes smells like chlorine to me.... so

allergic to water can open a huge "can of worms".

I do not take (or need) thyroid medication, and I don't think this itching is caused by iodine.

As of this morning I would say that I do now have what may be a rash. It is still tough to even know if it is a rash because I have been rubbing the itching area (a lot) rather than scratching it. It is still driving me to distraction.

I do appreciate the input folks. Any other ideas?

I know of 2 things that I have eaten since Tuesday that are things I have not eaten in a long time....

One is fudge, I ate some chocolate fudge on Wednesday.

The other is beans,... kidney beans and black beans, which are in some chili I made, along with a can of Rotel mild.

So, I am aware that one of these, very likely the beans :(may be the cause of the itching -- I ate some chili on

Wednesday evening and had it for lunch on Thursday. I am now avoiding eating the chili --and it's wait and see from here....

I have an appointment with the nurse practioner at my doctor's office, but not until next Wednesday.....

So, yes, wait and see...what happens with the itching in the meanwhile.... and also paying close attention to any

other symptoms that may crop up or get worse. (I can still go to a walk-in clinic...)

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It sounds to me like "winter itch". You may not think your skin is dry, but it is. The outside air is dry in winter, and inside with the heat on it is even worse. I have gotten winter itch every year now for the past 20 or so years, and lotions really don't help much. One thing I have found that helps a little is that I have replaced my anti-perspirant with milk of magnesia. I know it sounds crazy, but it works better than any anti-perspirant and it doesn't dry my skin in that area. My back and my belly and my legs still itch, but if I don't scratch I'm usually OK. It's scratching that first time that makes the itching get worse. If I can just ignore it for a while the urge to scratch goes away after a few minutes.

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Ummm - I am allergic to heat but not why I am posting - I got my first insanely itchy session that lasted several weeks just prior to my celiac diagnosis. I had two more before dx and have only had one such occurance since I removed gluten almost four years ago. And I live in southern California - our "winter" isn't much different than the rest of the year.

I would make sure you have removed all sources of gluten along with keeping a food log to see if any other foods are the cause.

For me - soaking in a tub of epsom salt and baking soda calms the itch to tolerable levels.

Hang in there - itching is the pits!

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I do have what appears to be a rash. I cannot figure out why though.

it itches all the time and nothing relieves it. nothing.

I have tried lotion, scrubbing, baby oil, anti-itch cream,..... nothing changes this at all.

I have been keeping track of what I eat (and drink), but since I have taken all new

foods out of the diet there has been no change. I am now going on the assumption

that the itching is not caused by anything I consume.

The only thing on my mind is shingles. I did have chicken pox as a child.

the only pictures I find of shingles look absolutely ghastly and nothing like what

my skin looks like right now.

I am wearing a t-shirt and I scratch the shirt -NOT the bare skin. However, scratch

or not it just itches all the time!!

I see a nurse practitioner on Wednesday. not soon enough for me!

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I do have what appears to be a rash. I cannot figure out why though.

it itches all the time and nothing relieves it. nothing.

I have tried lotion, scrubbing, baby oil, anti-itch cream,..... nothing changes this at all.

I have been keeping track of what I eat (and drink), but since I have taken all new

foods out of the diet there has been no change. I am now going on the assumption

that the itching is not caused by anything I consume.

The only thing on my mind is shingles. I did have chicken pox as a child.

the only pictures I find of shingles look absolutely ghastly and nothing like what

my skin looks like right now.

I am wearing a t-shirt and I scratch the shirt -NOT the bare skin. However, scratch

or not it just itches all the time!!

I see a nurse practitioner on Wednesday. not soon enough for me!

If it is DH - gluten can stay active in the skin for a very long time - hopefully the experts can add better info than I.

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One of the main reasons I was not that surprised when I was diagnosed (via biopsy) with Celiac Disease is that one of my worst symptoms was itchy skin. This was primarily in the winter, and there is never any sign of a skin ailment, other than the marks I leave from scratching that burning, itchy skin.

No dry skin --believe me, I have tried lotions and ointments and antihistamines....

There is absolutely no sign of any skin rash or blisters or anything!! But I itch and it feels like it's on fire.

This is happening right now and has been going on for 48 hours at this point.

I do not know whether to call the gastroenterologist or the regular physician.

It's driving me crazy! Is this part of the celiac disease?

Have I been gluten-ed and not realized it?

I don't think its a part of Celiac, but maybe in association of a compromised system, or

DH itself. Liver enzymes can be out of wack due to Celiac. It can be very common with a diagnosis (some can itch, others not). Meds, could also be a cause. Blood pressure meds or cholesteral meds could also be a player. Simply easy scratching can leave whelps. Add a cool compress to the agitated area.

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My DH manifested as intense itching beyond anything I ever imaged before the rash appeared. I do not know if this is normal or not, but it is what happened to me. Best of luck with the doctor.

I blew through about half a bottle a day, and didn't find that it relieved the itching completely but I did find that Calamine lotion helped take the edge off enough that I wasn't driven criminally insane. It must be pink and not clear. Have you tried Benadryl? I don't know if it will help or not, but I don't see how it can hurt.

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It's possible that it is dh rearing it's ugly head. I certainly hope not!!!!!!! But it is possible. The antibodies get into the skin & it can come & go at will until such time as all the antibodies get out of the skin.

We have had quite a few long time celiacs who never presented with dh (gluten-free for 8, 10 years these people) get cc'd or glutened & suddenly they break out in dh rash.

I'm going to excerpt a portion of this by Dr. Joseph Murray & also give the link for the entire paper.

http://members.ozemail.com.au/~coeliac/sprue.html

Excerpt:

What happens when a DH patient ingests gluten? In the intestine the

body's immune system mounts a response to the gluten. Part of that

response is the production of antibodies, which are like little

chemical messengers the body produces to attack things and help defend

itself. In DH patients those antibodies often get dumped under the

lining of the skin, where they just sit like little land mines for

days, months, or years. Then one day something triggers them

(sunlight, iodine in a cleanser, etc.) and you get this little

bursting forth as the skin's immune system begins attacking these

deposits thus forming the blisters. But the deposits occur originally

due to the intestine being exposed to gluten.

So you can understand better from this exactly how one can present with dh long, long after having been gluten-free or after being gluten-free & getting cc'd or glutened & then suddenly presenting with dh when you never did before.

Understand, I'm not saying your rash is dh but it could be.

Does it itch more at night & wake you up?

Is it symmetrical? Presenting on both sides of the body ie: both arms, both legs, both hands, both elbows?

Can you take photos & post them?

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It is possible that there may be other causes for itching? :) I understand that there is a common theme here connecting DH with Celiac, but there are others causes,too. I am currently undergoing a variety of options, as I stated earlier.

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Thanks Squirmy!

I never said "it is" only "if it is".

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I had skin BURNING and an insane itching -drive -yourself -mad skin issue including red blisters, canker sores and small oozing red bumps on my scalp.

My very celiac-savvy GI doctor said:

"There are many kinds of celiac rashes and they are not all full-blown DH. The burning was possibly a pre-cursor of the blistering rash of DH and your skin was affected"

All I know is I was bright red from head to toe and felt like I was on fire for 3 years.

DH manifests for YEARS in the skin layers.

but, yes, this intense itching could very well could be a part of celiac.

There are many skin conditions associated with celiac disease:

Chronic Urticaria (Hives) and Keratosis Pilaris for example.

http://celiacdisease...-Many-Forms.htm

and yes, it could be dry skin. But is it Flaky? if not, that's not it.

I get itching and burning sensations any time I get glutened.

By all means, have yourself tested for allergies, just in case.

Shingles is neuropathic pain and you would be crying and in agony if you had that.

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Thanks Squirmy!

I never said "it is" only "if it is".

YVW. And I totally understood what you said. You make yourself clear when you post. Just as I said it's possible it is; not *it is* but some people don't understand what they read. ;)

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I don't think its a part of Celiac, but maybe in association of a compromised system, or

DH itself. Liver enzymes can be out of wack due to Celiac. It can be very common with a diagnosis (some can itch, others not). Meds, could also be a cause. Blood pressure meds or cholesteral meds could also be a player. Simply easy scratching can leave whelps. Add a cool compress to the agitated area.

My DH manifested as intense itching beyond anything I ever imaged before the rash appeared. I do not know if this is normal or not, but it is what happened to me. Best of luck with the doctor.

I blew through about half a bottle a day, and didn't find that it relieved the itching completely but I did find that Calamine lotion helped take the edge off enough that I wasn't driven criminally insane. It must be pink and not clear. Have you tried Benadryl? I don't know if it will help or not, but I don't see how it can hurt.

It is possible that there may be other causes for itching? :) I understand that there is a common theme here connecting DH with Celiac, but there are others causes,too. I am currently undergoing a variety of options, as I stated earlier.

Multiple other causes for itching do exist. But with a confirmed diagnosis of celiac disease it would be reasonable to connect the dots and think that that Dermatitis Herpetiformis, a manifestation of celiac disease that presents in the skin, would be the cause.

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For me - soaking in a tub of epsom salt and baking soda calms the itch to tolerable levels.

My first thought was low magnesium. It can cause itching. That would explain why your epsom salt baths help. Epsom salts are magnesium sulfate.

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My first thought was low magnesium. It can cause itching. That would explain why your epsom salt baths help. Epsom salts are magnesium sulfate.

The epsom is for sore joints and muscles - the baking soda is for the itchies.

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The epsom is for sore joints and muscles - the baking soda is for the itchies.

Sorry 'bout that. I was pretty tired when I wrote that. I didn't mean for the statement to be definitive, more speculative. Meaning that the epsom salts MAY have helped some IF your magnesium was low. :)

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Sorry 'bout that. I was pretty tired when I wrote that. I didn't mean for the statement to be definitive, more speculative. Meaning that the epsom salts MAY have helped some IF your magnesium was low. :)

No worries...it is a valid thought -- most of us are low on many nutrients :)

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Wow, there are many issues that can cause itchy skin w/o rash. My Dad had renal failure and would sit for hours rubbing his skin with those bath gloves. I wouldn't assume it as DH without seeing a rash. I have had Shingles and believe me they are usually along a nerve run and look like Chicken Pox . . . itchy but very sore to touch due in part to the nerve pain. . .

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Same thing with my Dad. He scratched himself silly. No visible rash.

He was surely an unDxed celiac, given his many symptoms of severe anemia

requiring transfusions, GI problems, etc.......

but he also went into renal failure near the end of his life and one of the complications is insanely itchy skin.

No topicals worked for him at all. Poor guy.

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I happen to be experiencing major week of itch -- this morning I woke up with a great big DOH!!!

My folks have a new washing machine that they do not wish to use their old supply of liquid tide, so I brought it home to use it up.

We use inexpensive Kirkland powdered detergent -- just under a week ago I put sheets on my bed that I had washed in the liquid detergent -- DOH!! Hoping a sheet change and re-washing a couple loads will remove the incessant itching -- I'm tired of baking soda baths!

Here is an interesting article with regard to itch & pain:

http://www.hopkinsmedicine.org/news/media/releases/itchy_wool_sweaters_explained

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