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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.

First Signs Of Dh After Going Gf?
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14 posts in this topic

I've felt "glutened" now for just over a week. I had severe stomach pain, and continue to have major brain fog, fatigue, dizziness, lack of energy, bloat, stomach "problems" ect... I haven't delibrately eaten gluten but I may be eating something that is contaminated (Or maybe I just had a single contamination... :unsure:). However, today out of no where I broke out in these itchy/mosquito/blister like things. I have two on my arm (upper and elbow), a whole bunch on my leg, and one on my neck... and they just keep appearing! I never had this while eating gluten before the diet and I was just wondering if anyone ever developed DH for the first time during an accident or a contamination on the gluten free diet? I'm just trying to figure out what these things are! :blink:

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I've been doing a lot of reading on DH in the last month, and from what I've read it sounds like a very few people can begin breaking out just after they go gluten-free. Not very common though, I would go to the doc and make sure it isn't something like impetigo or an allergic reaction to something else.

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I personally had DH before being gluten-free, so I didn't really do a whole lot of reading about it when I was researching celiac disease, other than to confirm that the rash I couldn't get rid of was in fact DH. But I do have something to add here.

My kids never had DH before going gluten-free. 2 months ago my husband (the only one NOT gluten-free in our house) decided to switch to ZOOM! whole wheat hot cereal for his breakfast. At about the same time he also relaxed on his kitchen skills and we got contaminated. After about a week of him eating this cereal and all of us being sick I convinced him to toss the cereal and he switched to grits (which are gluten-free). Now the point of my story is that what finally convinced him to stop is when my DH came back and he couldn't deny that I had been glutened (the digestive symptoms he passed off as a virus!), but even worse my daughter broke out with DH on her scalp. This is the first place I break out too, and it was very obvious to me that the bistery bumps on her head was DH. I wouldn't have thought you could suddenly develop it after being gluten-free, but maybe a large enough dose of gluten could trigger it. It takes more than a casual microscopic particle of gluten to trigger my DH (but not my digestive symptoms, those can't handle even the tiniest particle!). So it would have had to been a lot of repeat contamination over that week.

It would probably be a good idea to go to the doctor anyhow just to make sure...

And keep looking to see if there is something new that you have recently started using that has gluten, or something that might have changed their formula and added gluten.

God bless,

Mariann

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Thanks for your replies :)

I have had a few suspicions of things around my house being contaminated like my peanut butter for example, since I'm the only gluten-free person in my house (I'm trying to get to the bottom of it). I'm going to have to clearly label things from now on B) However, I have tried a new product in the last week that said gluten free/wheat free on the label... so maybe it is contaminated... ??

Or....I may be having an allergic reaction to something else... I sure hope not though ;) I'll have to go see my doc if I don't start feeling better soon though.

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Mariann- What does your daughter's DH on her scalp look like? Does is get scabby or is it more like little pimples ??

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They were raised blisters about 1/8 of an inch round, very itchy, a little bit reddish around the base and a liquidy center. To me it almost look like a large chickenpox blister. Here is a picture of a lot of DH blisters. Hers looked just like them, but only three blisters (that we could find) separated by inches on her scalp. They pop easily and then scab over.

http://wwwils.nlm.nih.gov/medlineplus/ency...llsize/1406.jpg

God bless,

Mariann

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Medaka,

I totally understand what your going through. Since being diagnosed with Celiac your so much more in tune with your body and know when your getting reactions from the bad stuff. What I have to do in my house is put printed labels with Mom's name on it or I get those color dots and tell everyone that they're off limits. Just think when you spread anything with a knife & you stick it back in the jar ex. peanut butter, mayo or mustard, your getting exposed. Get you a toaster just for you. I always tease my husband and tell him he's trying to make me sick on purpose. Hahaha. One of the things about DH is that you body is trying to get the exposure out of it quick. When this happens to me I drink lots of water eventhough I really feel bad and don't want any but it helps and I double up on my Reliv shakes which will push all those toxins out of your system.

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Eloisa, Thanks for your reply and for your advise.

My spots are almost gone and my symptoms are getting better. I ended up giving my peanut butter away to the rest of the family and buying a new one. I have clearly labeled the new peanut butter, mayo, and margerine! Hopefully this helps ;) And I eliminated that product that I just started eating just in case that was the problem.

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That's great. Peanut butter is a funny thing and we sometimes have problems just because its made from peanuts. I always have problems eating M&M peanuts and I always feel funny when I eat peanut butter.

Take care,

Eloisa

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are you allergic to peanuts?

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No, but sometimes I wish I was so I wouldn't eat so many of those good M&M's.

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This is an interesting thread... I've never had DH before, to my knowledge, and have been gluten-free for 18 months.

At about the same time I went gluten-free, monthly acne outbreaks became a problem. I'm not a vain person, I work with dogs, they don't care what I look like! :lol: However, the acne did start to scar my chin and it was also painful. I finally decided to start a topical treatment and began using a product called Clear Logix. It works quite well, but quite honestly I never checked with the manufacturer to see if it is gluten-free! :unsure:

Not long after I started using this, I developed an occasional blister (almost cold sore like) on my top lip. My doctor called it peri-oral dermatitis and prescribed a ridiculously expensive drug that I declined. Next visit she gave me samples of Rosasol which is gluten-free, but didn't do anything for me.

Is it possible that this little blister is DH? It doesn't hurt, itch, or last very long. It has appeared on occasion even after I stopped using the Clear Logix so I'm thinking that had nothing to do with it. I know it's not a cold sore, for some strange reason I'm immune to cold sores! :rolleyes:

Any suggestions?? I'm on the waiting list to see a dermatologist, however in the meantime my doctor prescribed the antibiotic Minocycline which unfortunately is not guaranteed gluten-free! :angry: Since the top side effect is diarhea I've decided not to try it since I wouldn't know if I was getting diarhea from the possible gluten, or the side effect! :blink:

So, any suggestions for the acne?? I'm in a wedding party next month and would love to get a handle on it! Also, any suggestions on my little blister? Does it sound like it could be DH?

Carriefaith, I found it helpful to label my cupboards at home too! I have SAFE cupboards for the things we share that are gluten-free, gluten-free Products ONLY cupboard to help me keep track of my inventory of specialty foods, and a NOT SAFE cupboard for my hubby's stuff! For margarine, we use completely different brands, so there isn't any mix up, lids getting swapped etc. I have also gone to squeeze bottles for mayo and such to eliminate contamination from spoons and knives going into the bottles.

Hope this helps you! :)

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I think that it is possible that the Clear Logix may have had gluten and caused the blister. For acne, I've of people using birth control pills to control their bad acne. Just a suggestion :)

Thanks for the info! I try and keep my stuff separated in cupboards, but it's hard when you're living with people who eat gluten! I just recently bought a squeeze mayo bottle too! I thought that would help if someone accidently used mine instead of theirs!

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I sometimes get DH blisters on my face. They are like little pimples, but the top layer of skin sort of sloughs off. They don't really hurt, They heal very quickly. The blisters are most often on my forehead and close to my hairline. I don't use anything on them except astringent to dry them up. As for the squeeeze bottles: don't forget jelly. I don't share any jars with the rest of my family.

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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