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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dh Playing Games?
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dani nero    49

I'm starting to get a little confused about my DH because it has changed ever since I went low sals and iodine. Perhaps it's not even DH? It feels like it's playing a game sometimes! I know I got glutened recently but I've had no blisters at all this time.. just lots of dryness and burning.

It used itch in many places all over my body but mainly my nose and scalp, the rash itself though would show up on one finger only, and it would wake me up at night from excessive itching and burning sensation.. My finger would feel like it's throbbing.

Lots of tiiiiiiiny blisters that release water would show up on the finger, then the skin would get really dry and irritated and would break up.

Now if it shows up, I itch in many places (nose, scalp, hands, feet, and arms), but no blisters anymore, and my finger would not itch. It would just get seriously and hopelessly dry and the skin would be very pink and covered with mall hard lines that go in the same direction. It would ache and burn like crazy but nothing else. No matter how much I put cream on my finder it still gets dry again.

  • Has anyone ever had a similar rash that would change behavior like this? Could this be something other than DH?
  • Edit (The following point is already covered in a different post, so no need to respond to it :-) The post is at ):
    I'm curious to know about ALL the different shapes and forms of DH, so can anyone who has had DH at any point please describe what it looked/ felt like if you fee up for it? :-)

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Go to the DH forum, click on a permanent post at the top. A link will describe DH in many forms.

Yes, DH changes.

Yes, it looks different on different people.

Sounds like your hand is trying to heal. You need a water resistant barrier on that finger - like Vaseline. Multiple times a day. I have THE SAME THING ON MY FINGER. Wear gloves when washing dishes/cooking. Cover it with a band aid to keep it from getting irritated.

The other itchy spots- itch without rash, occur to me when I've been in contact with an irritant - usually topical gluten but it's different for everyone. Even seasonal allergies do it. It's like a DH "threat". Iodine did that to me (sushi).

It could be anything - sals, iodone, amines....it could just be part of healing.

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dani nero    49

Go to the DH forum, click on a permanent post at the top. A link will describe DH in many forms.

Oh I completely missed that! Go figure, I always miss the biggest buttons on pages too :-)

THanks! I'll edit my post

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dani nero    49

Yes, DH changes.

Yes, it looks different on different people.

Sounds like your hand is trying to heal. You need a water resistant barrier on that finger - like Vaseline. Multiple times a day. I have THE SAME THING ON MY FINGER. Wear gloves when washing dishes/cooking. Cover it with a band aid to keep it from getting irritated.

The other itchy spots- itch without rash, occur to me when I've been in contact with an irritant - usually topical gluten but it's different for everyone. Even seasonal allergies do it. It's like a DH "threat". Iodine did that to me (sushi).

It could be anything - sals, iodone, amines....it could just be part of healing.

Thanks for the feedback Prickly :-) although you'd probably wish it wasn't the case but you're the DH queen :-)

I'm glad to know that the intense and painful burning means is the dying face of my DH lol! Thanks again!

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Thanks for the feedback Prickly :-) although you'd probably wish it wasn't the case but you're the DH queen :-)

I'm glad to know that the intense and painful burning means is the dying face of my DH lol! Thanks again!

Well, the burning means one of two things to me: starting or stopping. Since its been there a while I'm betting on stopping.

I noticed mine tried to heal then I get careless and don't use gloves or don't moisturize then it comes back. So baby it. Mine also is changing how it looks. Ugh. I thought it was eczema/psoriasis but now it looks like herpes. I'm betting DH. It's not whitlow herpes or it would have spread across to my other finger, I think.

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dani nero    49

Well, the burning means one of two things to me: starting or stopping. Since its been there a while I'm betting on stopping.

I noticed mine tried to heal then I get careless and don't use gloves or don't moisturize then it comes back. So baby it. Mine also is changing how it looks. Ugh. I thought it was eczema/psoriasis but now it looks like herpes. I'm betting DH. It's not whitlow herpes or it would have spread across to my other finger, I think.

Its hard for me not to wash my hands since I'm also obsessive compulsive, but I'll try really hard to take extra pampering measures.

Doesn't herpes type a only show on lips or nose?

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Its hard for me not to wash my hands since I'm also obsessive compulsive, but I'll try really hard to take extra pampering measures.

Doesn't herpes type a only show on lips or nose?

I'm not sure of type a but herpes whitlow is what is supposed to show up on hands (and feet, elbows?).

Of you can stand a band aid on it I think it helps tremendously, with a bit of salve.

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squirmingitch    495

Dani, yes, dh mutates. I swear it mutates just to frustrate us! Just when you think you have it figured out it goes & does something different on you. Your finger does sound like it's in a healing phase. Covering it will help like Prickly says. And then you may get slapped in the face (figuratively) when dh blisters pop back up on the finger. Darn stuff is vexing. But hopefully you have been gluten-free long enough that it's just not reacting that badly to the glutening. Maybe the antibodies are leaving your skin quickly. I sure hope so. Then again, the dh may leave your finger alone for months but decide to show up as blisters (or itchies w/o blisters) somewhere else on your body.

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dani nero    49

Dani, yes, dh mutates. I swear it mutates just to frustrate us! Just when you think you have it figured out it goes & does something different on you. Your finger does sound like it's in a healing phase. Covering it will help like Prickly says. And then you may get slapped in the face (figuratively) when dh blisters pop back up on the finger. Darn stuff is vexing. But hopefully you have been gluten-free long enough that it's just not reacting that badly to the glutening. Maybe the antibodies are leaving your skin quickly. I sure hope so. Then again, the dh may leave your finger alone for months but decide to show up as blisters (or itchies w/o blisters) somewhere else on your body.

I'm glad others have had the same DH character changes.. I was starting to think maybe it was never DH because the blisters were gone.. err not that I'm not glad they're not showing up, and I hope they don't decide to make an appearance months later because that would make me think I'm being glutened!

Thanks for the advice you two! I didn't expect the rash to start improving so rapidly :-) My finger's skin is less stiff today.

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squirmingitch    495

I think that's what's so tricky about this dh stuff. It can make an appearance (or not) at any time glutened or not until all the antibodies are out of your skin. Makes it darn hard to know if you've been glutened!

Now, in my particular case, I have few (external) GI issues from celiac. The last time I was glutened, I had terrible sudden onset of cramps before running to the bathroom where the cramps got worse to the point you can't hardly catch your breath & I will not explain the TMI that followed. And this happened once or twice a day for the next 3 days. Now, as weird as it sounds, I am hoping this is how I will react from now on when I get glutened b/c at least then I will KNOW I had been glutened you see. Of course, the dh followed but at a much slower pace, many days later. If I have to depend on the dh alone then it will be almost a case of anyone's guess type of thing. But if my sign is going to be GI symptoms presenting then I won't have to question a possible glutening or cc; you follow my thought process?

And yes, when dh starts improving, it can be lightning quick! (or not)huh.gif

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dani nero    49

I think that's what's so tricky about this dh stuff. It can make an appearance (or not) at any time glutened or not until all the antibodies are out of your skin. Makes it darn hard to know if you've been glutened!

Now, in my particular case, I have few (external) GI issues from celiac. The last time I was glutened, I had terrible sudden onset of cramps before running to the bathroom where the cramps got worse to the point you can't hardly catch your breath & I will not explain the TMI that followed. And this happened once or twice a day for the next 3 days. Now, as weird as it sounds, I am hoping this is how I will react from now on when I get glutened b/c at least then I will KNOW I had been glutened you see. Of course, the dh followed but at a much slower pace, many days later. If I have to depend on the dh alone then it will be almost a case of anyone's guess type of thing. But if my sign is going to be GI symptoms presenting then I won't have to question a possible glutening or cc; you follow my thought process?

And yes, when dh starts improving, it can be lightning quick! (or not)huh.gif

Yeah I get what you mean. I know that many people consider the GI symptoms a curse but they do have one advantage: If you've been glutened, you can tell. Did you not get GI symptoms in the beginning?

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squirmingitch    495

Hindsight being 20/20 the short answer is yes. Now that I have learned about celiac I can look back & see the correlation between events & celiac. To summarize: I had celiac since childhood & believe I went into remission until teen years & experimentation with beer which I HATED. I used to tell my friends it felt like a garden rake had been used on the lining of my stomach after drinking beer. YES! I absolutely had GI/bathroom symptoms then. And then when my hubs & I got married we pretty much ate a lot of whole foods b/c they were cheaper than junk & processed. Hubs hates sandwiches so we didn't do much bread at all. He also didn't care for breakfast pastry so we didn't do much of that. I would from time to time have GI symptoms like what the beer did to me. Those may well have been times when I had cake or cookies & such. Then about 8? years ago I began to have more along the lines of GI stuff but not to the extent that I was really concerned about it. I DID have a lot of major indigestion or actually what I would describe to my hubs --- "it feels like I don't have ANY acid rather than too much in my stomach". I used to call it NON digestion rather than indigestion. And I got horrid bloat; such that there were 3 occasions when I came a hair's breadth from calling 911 in the middle of the night. I talked to docs about this & they blamed it on menopause. Then about 4 or 5 yrs. ago I began to get one or two tiny itchy blisters. They would resolve in 1 to 3 days. And then more & more in more places & then the big major outbreak which covered my entire torso. And the rest is history.

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dani nero    49

Hindsight being 20/20 the short answer is yes. Now that I have learned about celiac I can look back & see the correlation between events & celiac. To summarize: I had celiac since childhood & believe I went into remission until teen years & experimentation with beer which I HATED. I used to tell my friends it felt like a garden rake had been used on the lining of my stomach after drinking beer. YES! I absolutely had GI/bathroom symptoms then. And then when my hubs & I got married we pretty much ate a lot of whole foods b/c they were cheaper than junk & processed. Hubs hates sandwiches so we didn't do much bread at all. He also didn't care for breakfast pastry so we didn't do much of that. I would from time to time have GI symptoms like what the beer did to me. Those may well have been times when I had cake or cookies & such. Then about 8? years ago I began to have more along the lines of GI stuff but not to the extent that I was really concerned about it. I DID have a lot of major indigestion or actually what I would describe to my hubs --- "it feels like I don't have ANY acid rather than too much in my stomach". I used to call it NON digestion rather than indigestion. And I got horrid bloat; such that there were 3 occasions when I came a hair's breadth from calling 911 in the middle of the night. I talked to docs about this & they blamed it on menopause. Then about 4 or 5 yrs. ago I began to get one or two tiny itchy blisters. They would resolve in 1 to 3 days. And then more & more in more places & then the big major outbreak which covered my entire torso. And the rest is history.

Rake stabs! That sounds so painful I don't like to even think about it. I only had such pain twice in my life and they were due to food poisoning. I never want to ever feel that pain again :-( Talk about a VERY pricy gluten-alarm!

Summing everyone's symptoms up, it seems that antibodies can't make up their mind. They can't decide how they want to react!

Your hubs seems like a healthy eater :-) Mine thrives on sandwiches, pasta, and any type of processed carb possible ;-(

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squirmingitch    495

Rake stabs! That sounds so painful I don't like to even think about it. I only had such pain twice in my life and they were due to food poisoning. I never want to ever feel that pain again :-( Talk about a VERY pricy gluten-alarm!

Summing everyone's symptoms up, it seems that antibodies can't make up their mind. They can't decide how they want to react!

Your hubs seems like a healthy eater :-) Mine thrives on sandwiches, pasta, and any type of processed carb possible ;-(

I think you summed it up quite nicely = antibodies don't have a clue!

Nah, my hubs is a meat & potatoes guy. he doesn't eat nearly enough veggies. I grew up eating very balanced I think. Lots of veggies & fruits in there.

And thank goodness I've (fingers crossed) never had food poisoning! Hubs has & like you is deathly afraid of it ever happening again.

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