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 SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Wow. The doc that gave me the Neurontin never said anything about weaning off of it! (No surprise there). I think the dose I took was 100mg and I only took it intermittently (not every day) so I didn't have any problems, thank goodness. Thanks for giving us the heads up.
Here's something I found that might provide some relief from the symptoms of DH. It's called Neurontin (gabapetin). It is used for restless legs, fibromyalgia etc. It was given to me years ago because of insomnia and fibro. A while back when I was having a really big awful flare of helllish itching, burning DH, I decided to see if it would help and it did! It really mellowed out the night time itching (I took it at bedtime) and seemed to have a lingering effect the next day. It is not a horribly sedating drug so it can be taken during the day if you don't have to drive or anything. It doesn't have any direct effect on the rash itself, just relieves that overall tingling, burning, itching that makes a person want to roll around on astro turf to make it stop.
These photos look like my DH when it first started 10 years ago. I initially thought that my skin was sensitive, or that I was getting some kind of bug bites. Over time it got worse and worse and spread over more and more of my body in larger patches that blistered over and over again.
Try to get it figured out ASAP because you might be able to avoid the years of suffering that many of us have dealt with. You skin looks pretty good at this point and you don't want to end up with the scars, dark spots and white spots that years of DH can cause.
My rash is always the worst early evening and at night.
The psychiatrist I consulted after 3 dermatologists told me I was crazy explained why (and it's not because little bugs are coming out at night). Although scabies will be more active at night, most rashes will also itch more during the evening hours.
Here's why: When we wake up in the morning our body's natural steroid levels are at their highest and they decrease as the day progresses. This is why fevers are higher at night, flu symptoms are worse, DH ITCHES MORE, etc. etc.
Why does a psych know this when regular docs don't?
I think "non-celiac" means that all testing is negative and there are no GI symptoms. She did say that they are not sure whether it is due to the fact that DH patients often have patchy (or no) damage in the small intestine and a positive skin biopsy requires hitting the right "target" so biopsy could be negative much of the time. They haven't figured it out definitively. She supports me remaining strictly gluten free since I have improved so much over the last two years.
10 years with blistering insanely itchy rash.
8 years of being told I was "stressed" "neurotic"
A little over 2 years strictly gluten free after being evaluated by a really caring allergist who by process of elimination and many years of seeing folks with DH made a diagnosis and agreed to help me try to manage it because I could not bring myself be shamed by yet another dermatologist.
2 celiac genes, Enterolab testing showed positive reaction to gluten.
Two years of gluten-free has resulted in a reduction in itching, oozing lesions from about 150 to 24.
Recently consulted a new derm to see if there was any help for the ravages DH has wrought on my skin.
I'll try to be brief, but thought this was important information to share:
This doctor actually asked me how certain I was that it is DH and when I told her 95% and my reasons,she agreed with me. Can you believe it !? She listened and heard me! She also called one of her partners and a nurse practiioner to have a look and we all discussed my history and experience with the rash. They were awesome.
Based on the appearance of my skin (after 2 years gluten-free) she said that I could have something else going on in addition to DH. After many years of trying different things to control the itching, and the damage from scratching in my sleep, the mantle of the skin can become damaged which can leave one open to a secondary eczema. So she biopsied my most recent itchy spot and a place adjacent to it (yeah!). BUT only after she made me go three weeks without any steroid cream anywhere on my body. I was so jazzed because I knew instantly she was looking specifically for DH on one of the biopsies.
I blistered everywhere on and around the biopsy site and sent her an e-mail with pix attached. She called me in right away so whe could have a look because it had the classic DH appearance. As luck would have it my test results were back by the time I got to the office, but they were negative for DH! This after a big ole itchy blister rose up right between the biopsy sites! She said that doesn't mean I don't have DH. The results were positive for eczema.
Now here is the part that is interesting to me: We have read over and over that DH is a diagnosis of celiac disease. Recently on this forum I have seen a few posts where doctors have said that DH is strongly "associated with" celiac. This doctor, who is very experienced with DH, who actually "likes the challenge of rashes", said that about 10% of people with DH do not test positive for celiac (either in the gut or in the skin), but it is still considered DH and the treatment program is essentially the same. They are not sure why this is. Does this mean a variant of DH that is not celiac...again they're not sure. These are observations of derms who are seeing patients with DH. This doctor is not B.S.ing me, I'm sure of it.
She supports my decision to remain gluten free and is now helping me to try to achieve final healing on the spots that remain on my skin by implementing a program of skin care that is used with eczema patients.
If only all those who have suffered years with this miserable curse could have found someone like her early on. Even at this late stage I feel so lucky to have someone partnering with me going forward.
Oh man. I wanted to scream after I read your story.
It took me 8 years to get diagnosed and I got blown off and told I 1) was a "picker", 2) I had "stress eczema 3) "neurotic excoriations". "Use this cream and stop scratching"....
All along I was seeing a good psych doc who kept telling me that they were full of bull and to keep trying. I found an allergist who was knowledgeable and he helped me. He was surprised at how I had been treated since it was obvious to him that I was blistering and THEN scratching.
And, by the way, opiates can make the itching worse. They can cause itching in people who don't normally have any skin problems. I was prescribed a short course of hydrocodone when I hurt my back a few years ago and my "spots" itched even worse. I know you have chronic pain so you might not have a way around it.
Just a side note about how they treated you at the hospital. Here's a good story. My husband recently had open heart surgery (5 by-passes). He was on the heart/lung pump for 6 1/2 hours. Apparently being on the pump that long can cause severe anxiety for a few weeks after. My brother (a doctor) told me to ask for some medication to calm him when they released him from the hospital. The hospitalist refused to give him anything stating "that's the kind of drug that is worth a lot on the street". I was shocked! I think they are just paranoid and ignorant. When I told the surgeon about it he was livid and heads rolled. So it's not just you who is getting treated this way.
Welcome. You'll get great info and support here. This forum helped me keep my sanity.
Is there a way to pin it at the top of the DH forum so newbies can be sent there? I sure wish I had had this wealth of information all in one place when I started my long education about DH and how to deal with it.
Oh man. Your pictures look like me a year ago. I really feel for you.
Regarding the stool tests: I did the EnteroLab testing because my blood tests came back negative (as is common with DH). I ordered the package that tests for gluten, casein and also does genetic testing. What I really wanted was the genetic testing because I wanted to find out if I even have the genes that predispose to celiac. My intestinal antigliadin antibody was elevated and they recommended going strictly gluten free permanently. My genetic testing indicated that I had TWO celiac genes. I took the results to my doctor (who believed it was DH all along) and he agreed with the lab's recommendation to go gluten-free. He stated that having two predisposing genes, along with the elevated antigliadin antibody, along with the appearance of my rash warranted going gluten free for at least two years to see if I could clear it up. His opinion was that I have DH and that because I had gone undiagnosed for about 7 years it would likely take a minimum of two years to get the antibodies out of my skin.
I am now at the two year mark and the horrible rash (like your pictures) is 95% better. I am still struggling with the skin damage that many years (pre-diagnosis)of scratching and using steroid creams have caused.
Your pictures look like DH to me. The fact that it is presenting on your elbows (a location that is mentioned quite often in the medical literature) could be a clue as well as the extreme itchiness and your gut symptoms.
If it is DH, steroids will only provide relief when you are taking them. It comes back with a vengeance as soon as you stop the medication. Almost like it is waiting for the meds to be over so it can pop out again.
There is a skin biopsy that can diagnose DH, but you must be still consuming gluten for the test to even stand a chance of being diagnostic.
I'll defer to the other members of the forum who will chime in with lots of good information for you. They know more than most doctors!
You pictures look almost exactly like my DH as well. Mine started on my shins and my upper back and because I went undiagnosed for so long, it moved up my neck into my hair in the back, my outer arms, my behind cleavage (not sure what this area is really called ) and the tops of my feet sometimes.
My understanding of prurigo nodularis is that it is a result of scratching something that is constantly itching (like DH). Seems like the docs just stop at the DX of prurigo nodularis without getting to the bottom of what is causing the underlying itching and skin eruptions. Even eczema has triggers that need to be identified and eliminated. Steroid creams help relieve symptoms in the short term, but can cause the skin to become fragile and thin which invites problems later.
Your pictures look like your skin is a little raised and thickened. Mine looks like this until a lesion is done erupting. Once it is done, it will flatten out completely and stop itching and heal. Then it will eventually fade often leaving a white mark behind.
I see that the others on the forum have given you great feedback. Good luck in your quest.