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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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Could This Be Dh?
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7 posts in this topic

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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    • Welcome!   Sorry to hear that you had been gluten free when you were tested for celiac disease.  The only way to get an official diagnosis is to do a gluten challenge under a doctor's care: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ As far as recovering from a glutening?  Everyone is different.  It can take a week or months to recover.  There is no speedy way...rest, stay hydrated....  
    • 🤗.  Okay.....but what is the cause for the low ferritin?  A glutening?  When was the last time you had a celiac antibodies test or do you use DH flare-ups as a gauge?  
    • Ok... drum roll.... Cyclinglady wins! I am just anemic - ferritin is quite bad (10ng/mL), but hemoglobin still intact. Didn't get a look at the full results (Canada problems - doctors only give you the full print-off if you harass them for it), but everything else was apparently ok. I'll be downloading the full results for my file tomorrow from the lab. Not too worried about this, as I've been much more anemic in the past and managed to recover pretty quickly via supplementation. I'll be back for a second blood test in 6 weeks to check it's worked. So while this certainly answers the question of why I've been feeling so crappy for the last few months, the iodine thing still remains a bit of a mystery. I have been avoiding large hits of iodine for about a week and will probably keep at it for a few more to see what (if anything) happens. But for now... more steak and liver haha.
    • I only test positive to the DGP IgA (even in follow-up testing) and my biopsies were a Marsh Stage IIIB.  Thankfully, my GI ran the entire panel!  Most doctors prefer the good, but cheaper TTG IgA test, but it does not catch all celiacs like me.   In fact, it often does not catch young children and really old people based on a few pretty recent studies.  I would also suggest requesting the rest of the celiac panel.   Keep advocating!  😊
    • Just search for GIs in your area.   Usually doctors post biographies.  Look for someone who mentions celiac disease in his/her bio.  Then call the office to confirm.   Sacramento is a pretty big city.  If you are not successful, there is a celiac disease center at Stanford University.  
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