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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

http://s1285.beta.ph...html?sort=3&o=1

http://s1285.beta.ph...html?sort=3&o=2

http://s1285.beta.ph...html?sort=3&o=0

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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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And this is mild! I'm searching for a derm with experience with DH...I'm having a difficult time.

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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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