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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.

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I started having this issue I *think* during jr high school. It has pretty much been a constant thing though it would get better or worse at times since then. I am now 27. I went gluten-free about a year and a half ago for unrelated reasons and it pretty much went away with just a couple lingering spots (I am awful and a picker of scabs don't even realize I'm doing it...) Once in a while I would get the insane itching but it wouldn't last super long and would stop. Now I have this going on. Have been getting takeout more often because I am lazy lately (see: pregnant) and then Thanksgiving. Been pretty careful I thought but who knows. Maybe pregnancy can make you more sensitive too? Anyway... Could it be related to gluten/dh? It itches like freaking crazy and drives me nuts. When I had them before they would end up getting scratched off and bleeding. Awful... Here is a picture... Sorry it is kind of poor quality... http://lh5.ggpht.com/-gjY_I2JxtGE/ULSJf-05GKI/AAAAAAAAAHc/u53zP_UiAHs/20121127_011233.png Also I have never had a problem with acne so I don't think it would be that, and I don't think acne itches like that. It has gone partially down the back of my shoulder before too. I don't know...

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It sure appears possible. My question is whether you have been completely gluten-free or just light? If it's DH it would suggest you haven't been totally gluten-free and you mentioned Thanksgiving and carryout. Were those foods prepared gluten-free as well?

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Based on what you said happened when you went gluten-free & it's return now with take out food & Thanksgiving plus the photo; I'd say it's dh. You can't trust take out food & taking risks also with Thanksgiving. And YES! pregnancy can have an effect also.

You need to be 100% gluten-free no doubts about it kind of gluten-free. DH is sensitive to the tiniest amount of gluten.

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We hosted Thanksgiving so the turkey and gravy were prepared gluten free. There were some desserts made by others that were made gluten free but don't know how those were prepared as it was not by me. Typically we very rarely eat out and I make everything from scratch. We actually eat mostly grain free. I am sure I have gotten less careful lately with the take out with the pregnancy and not feeling awesome. My husband was saying after thanksgiving his chest was feeling tight so it makes me wonder. He has pretty severe asthma which went away since going gluten-free and he hasn't had to take any meds for it anymore either. He decided to get tested for celiac so started eating it again for that and couldn't keep it up. Kept having to visit the er for asthma attacks. So this makes me wonder too if there may have been some kind of unknown source at thanksgiving or something. Who knows... To be honest I wish I had known before to get everyone tested before going gluten-free just to know. Would be nice to know for family to also get tested and for our kids to know for the future... May look into the genetic tests in the future...

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Welcome Undrznith,

Some people report that iodine in their diet makes their DH act up more when exposed to gluten. The way they test for DH (dermatitis herpetiformis) is to take a biopsy sample of the skin right next to a lesion, not the lesion itself tho. DH is a skin expression of celiac disease. So if you are diagnosed with DH then you have celiac disease too. They test the biopsy sample for antibodies to gliaden. There is a section of the forum for DH issues with more information. You came to the right place! :)

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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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