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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.

Early Signs Of Dh?
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6 posts in this topic

Are there any?

I'we been on a gluten challange the last two months due to celiac testing.During that time I have had an itch that comes and goes. It itches really bad. It wakes me up at night. But there is no rash...

I finished the challange four days ago, and today the itch is back, worse than ever. My uper and lower arms and my hands itch like crazy, there is now way to keep fram scrathing. My skin in red and sore form scratching, but can't really see any rash, just two little bumps on my upper arm. Is it posible that this is an early stage of DH?

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I haven't been able to find much on early symptoms of DH, but I can completely relate.  I got glutened at a restaurant three weeks ago.  It took me seven days to recover (thankfully it wasn't longer), but what I did notice was an extremely itchy forearm that I was unconsciously scratching all the time.  No rash.  Just an insane itch.  I tried  remedies for mosquito bites, but it didn't help.

 

The itch took another week to end.  I really think it was start of DH.  I never had DH symptoms before my diagnosis (symptoms were anemia and Hashimoto's Thyroiditis) but the glutening brought on intestinal symptoms, headaches and body aches.  Yuck!  It was such a violent reaction.  Who knew?  

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It's hard to say. One of those could be, couldn't be things. There really isn't any research or med texts on that subject so we can only go on what we have experienced personally. There are so many rashes associated with celiac disease that it could be any of those. There is plenty of evidence that states you will get itches 12-24 hours before blisters ever appear & I found that to be very true in my case. I used to ask ppl I knew if they ever got itches that drove them insane but there was nothing, absolutely nothing there even if you looked with a magnifying glass --- the ppl I asked always looked at me like I was nuts & said that no, they don't get that. I used to get that long before I ever got the first blister following the itchy area. So, from my personal experience, it fits dh or pre dh which ever way you care to term it. Perhaps it's the antibodies building up under the skin making the itchies.

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Are there any?

I'we been on a gluten challange the last two months due to celiac testing.During that time I have had an itch that comes and goes. It itches really bad. It wakes me up at night. But there is no rash...

I finished the challange four days ago, and today the itch is back, worse than ever. My uper and lower arms and my hands itch like crazy, there is now way to keep fram scrathing. My skin in red and sore form scratching, but can't really see any rash, just two little bumps on my upper arm. Is it posible that this is an early stage of DH?

My Dermatitis Herpetiformis was diagnosed after I started having problems with blister-like outbreaks on my elbows.  My Dermatologist did a biopsy of the blisters and the test was positive for DH. (I also have the 'internal' Celiac.)  Now, several years later, I start getting blisters, or cold sores, around my mouth if I've consumed anything with gluten in it.  Hope this helps.

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I'm pretty sure my itchy sting rash is DH. I'm not celiac but diagnosed gluten intolerant. My symptoms were first Gastro problems but now that has cleared up fairly well and I get an uncontrolled itching to the bone rash when I intake even small amounts of gluten. By dermatologist agrees its DH although my biopsy was inconclusive (I need to have another one done). For me the DH rash starts out without blisters just an intense itching. They itching seems to move around but mine is rash blister are the worst on my forearms elbows and wrist. I get the intense itching on my palms and the bottom of my feet but a rash breakout have never happened on them. Maybe because the skin is thicker??? So I'm thinking that gluten is leaving my gut unscaved for now and showing up outwardly as a rash. I'm allergic to Daspsone which is the treatment of choice, because it contains sulfa. I've been icing the areas and taking hydroxyzine to relieve the itching. It just an antihistamine.

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If you have dh you are celiac ---- PERIOD. You are not gluten intolerant --- you are celiac. And it certainly sounds like it's dh. Biopsy schmiopsy. If you are gluten free then no dh biopsy will come up positive -- not the first time & not the second time. Sorry. Your derm should know that. Dh also keeps presenting for 2 years (or even longer) after you have been STRICT gluten free. Also, once you begin presenting with dh then the gut issues most often "take a back seat" b/c now the celiac is presenting in your skin. This does not mean that gluten is not or will not do harm to your gut but only that the overt symptoms now present as the skin rash.

DH is extremely sensitive to the smallest amount of gluten so you need to be RABID about not getting cross contaminated.

 

And welcome to the board no one ever willingly wanted to be a part of! :lol:

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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