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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 Celiac.com's FREE weekly eNewsletter   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

Could This Be Dh?

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Hi everyone, I'm new here. I have never been diagnosed as celiac or gluten intolerant, but for the past 6 years, I've come to my own conclusion that there is a good possibility I am. I do not have insurance, so going to the doc for multiple tests isn't an option. It took about 4 years for me to determine gluten may be the cause of the health issues I've been having. The first time I ever went gluten-free, and I say first time because I've gone on and off several times over these last 2 years, but the first time I took it out of my diet, I was a new person! But without an "official" diagnosis, I find myself around holidays or birthdays, talking myself out of it, thinking maybe it's all just in my head. I've had gastrointestinal symptoms for the full 6 years, hair loss, even tooth enamel loss! Muscle weakness and soreness, etc., etc., etc...I'm sure the roller-coaster of going from a gluten-free diet back to eating gluten, only makes matters worse. So after being gluten-free for some time, again, I decided to be in denial 6 weeks ago, right before Christmas, and start eating gluten again! Well now for the same amount of time, I have developed this insane "rash" that won't go away!

After living on benadryl for 4 weeks, I had to cave and pay to see the doc, the itching was making me lose my mind! The flares were severe, sometimes painful, and very widespread...always bilateral too...well, of course she didn't know what it was...sent me on my way with a treatment cycle of prednisone and zyrtec to take nightly...for...ever, I guess! That was 2 weeks ago. The rash remains, I have not had one rash free day, but the meds have lessened the severity and frequency of these flares....but since finishing the prednisone, it comes back a little more and a little stronger each day. I am still eating gluten currently, thinking maybe I should see if I can get this biopsied and checked for DH...and this way I would know for sure whether I'm celiac or not. I have just read that a biopsy positive for DH, automatically confirms a celiac diagnosis...which is a lot cheaper that a colonoscopy!

I've attached a few pics, this is very very mild and really doesn't give an accurate picture of how severe this has been....but I thought it would be worth a shot and see what others have to say. Any input would be appreciated! Thanks:D




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Yes, could be. Infact I have DH and those pictures look very similar. I've had it for >2 years and it pre-dated my Celiac diagnosis by almost as much. Since going gluten-free four months ago I've now tested negatively for Celiacs i.e. the diet is working. I still have DH though, it's not too bad - elocon used very sparingly calms it down pretty well. I get it mainly on top of my back, shoulder, and abdomen at the sides, and head/face much more mildly. Used to get it on the legs too but not now for some reason.

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I'm not an expert by any means, and I only found out what I have is DH less than 2 months ago, but your spots look exactly the way mine did in the early stages. I've had this current outbreak for over a year now and have only been gluten-free for a few weeks at this point, but I've had some marginal relief after switching all my bath and body products to gluten free ones meant for sensitive skin. At the very least, my body wash has aloe as the first ingredient, so when the itching is really terrible I take a lukewarm shower and clean the rash gently and I have an hour or two of relief. It has also helped with the drying and peeling stage of some parts of my rash. I have also been trying to go low iodine as has been suggested on the forum here, but I think it's too soon to notice a change.

So, as I said, I can't diagnose you or anything, but the raised bumps and welts are very familiar to me, and I have confirmed DH with a dermatologist. I followed advice given here and asked the derm to biopsy healthy skin near the rash, so I definitely suggest making sure your doctor does that if you do decide to get a biopsy.

Good luck!

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Thank you guys so much for the input! Now I just need to find the right Dermatologist that will hopefully listen to me.

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Dang...you should try to find a dermatologist that can get you in today. That's a pretty bad flare up. It looks like mine have in the past. I have an appt this afternoon with a derm.

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    • His diabetes educator is not an expert in celiac. IMHO the lets wait 3 months is cruel and unneeded.  Ask his GP if he will give the 'formal' diagnosis if you put him on the diet and those numbers go down with retesting in a few months.  Or ask for an immediate referral to a GI doctor knowledgeable in celiac. With numbers like that there really is no doubt about his need for the diet.
    • You finally know what has been slowly and painfully killing you. Recovery will not be quick but it will come. You will find yourself running up the stairs in 6 months and will sit sobbing at the top for half an hour. It will be about 5 years and lots of PT before you will walk normally again but not long ago you remodeled the bathroom because you were told you would be in a wheelchair soon. The nightly agonizing hours in the bathroom will be replaced with a solid eight hours sleep now except when you accidentally get glutened. Those glutening will come farther and farther apart though as you get better at the lifestyle.  It seems like there is nothing you can eat right now but that will change as more folks are diagnosed and more foods become better labeled.  Your skin will heal and your hair will grow back. That early gray isn't going away but eventually you will prefer it to having to dye it every three weeks or so because it now grows faster than it has at any time in your life. You will have lots of times that you feel sorry for yourself but a quick trip to look at that tackle box full of meds you no longer need will be a comfort. You will have some residual damage even years later but nothing you can't handle. You will be able to work again and to go back and finish those degrees but you will go back to school too soon. Don't be too hard on yourself as a couple years after that you will have recovered enough to take and pass those classes. Your life isn't over with this diagnosis it is just going to be different. But it will be a better different without the pain and moodiness. Eventually your family will understand and stop the eyerolls because they will see you healing. It will be hard socially but your social life was always tough anyway.  The important thing is you will get your health back and that is more important than grabbing a quick meal at a take out joint. Hang in there.
    • I can understand doctors being cautious and wanting certainty before diagnosing a youngster with a lifelong condition that will limit their already limited dietary choices. Even so, his figures seem to make a very strong case and I wonder what their rationale is for waiting 3 months? That seems to be time that could be better spent getting him healthier on a gluten-free diet. I wonder if you can ask them what clinical advantages the delay will bring? Either it could speed the process along, or at least you'd get a better understanding of why they advocate a delay? 
    • He had the dpg igg as well. That came back at 50, normal is under 20.   It's the waiting that is hard and the reluctance of Drs to diagnose. His diabetes educator has already said they won't pay attention to those results for 3 months and then they'll test again. If they're still high they will look at the next steps. Gp seems a bit more ready to proceed now so hopefully he will get the referral sorted so we can have a definite answer before too long. 
    • You find a magic typewriter in an old musty box in the attic. It will allow you to write a message to yourself on the day that you found out you had celiac (or gluten sensitivity etc). You can include anything you've learned about yourself, handling celiac, good strategies for coping, how to deal with emotional issues, hostile reactions from friends and family, travel, work, dating. etc.  You may not include details of who won the World Series / next weeks lottery numbers etc as this would break the space time continuum and the typewriter will give you a nasty shock if you even try it, so just keep to the celiac insights.      
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