Another "could This Be" Case

[susan-2424]

I think I may have DH. I broke out in a rash beginning of November, mostly on my arms and hips. Went to the doctor, he said it was eczema, and prescribed a cream, told me to use a lot of moisturizer, and gave me a script for prednisone because it was pretty bad. The prednisone helped, but as soon as I went off it the rash spread all over.

I've done searches on the internet for pictures of different rashes, hives, skin conditions. Nothing looked really like what I have. Went back to the doctor again, and he agreed with me that it wasn't eczema. He prescribed prednisone again, except I took it in a different way. (start out with a high dose and taper down) Again it got a little better, but didn't go away totally. After I went off the prednisone, it didn't seem to be getting a whole lot worse this time. One week I ended up eating a lot more bread products than normal, and I noticed the rash got a lot worse. I looked up gluten intolerance rash and it looks identical! Seems to act the same too. I guess I don't notice a burning sensation so much, mostly after scratching but I attributed that to scratching too much.

Went back to the doctor, he did a blood test and of course everything came back normal. I should also add that I've had some intestional issues for about 14 years, have been diagnosed with irritable bowel and have issues that tend to come and go.

I was referred to an allergist and am waiting for the appointment. I am getting desperate here, I just want something to work to take this away. I have tried antihistamines and they do absolutely nothing. I have noticed that I have random bruising around the itchiest areas as well. Anyone experience this?

I will upload a picture later to see what you all think. I was also wondering if anyone knows of any skin conditions that can mimic the look of dh? I am practically in tears over this. I am so sick of itching all the time, and these scabs are awful looking! It keeps me up at night, I've ruined some clothes from scratching and the bleeding that comes from it.

Advice, thoughts?? Thanks for taking the time to read this. Oh, and do you think I should find a good dermatologist and schedule an appointment for a biopsy? If I were to just go gluten free on my own, how long would it take for the rash to show improvement?

[eatmeat4good]

DH is very difficult to diagnose unless you are one of the lucky ones who walk in to a dermatologist and they say "Oh that is DH." There are a couple of people here who were that lucky. I wasn't one of them. My DH was atypical in appearance, so you cannot always rely on the pictures or the tests. The telling thing is the severe itchiness that is worse at night. Mine was more painful than itchy. It moved from my legs and elbows to my face where it made it's worst appearance. It lasted 7 years with many many prescriptions and Dr.'s and dermatologists not able to diagnose it. This too is typical.

You could schedule an appointment with a dermatologist and try to get a skin biopsy of the clear skin next to a lesion as that is where the IgA antibodies will be found.

To answer your question about how long it will take to go away. It can vary from a few weeks to a few months to a few years. When I realized it was DH and went gluten free, I saw no relief in the rash at all until I eliminated iodine. Iodine can keep the antibodies reacting just as if you had ingested gluten. I was gluten free for 3 months and was limiting iodine, but it wasn't until I got rid of every conceivable source of iodine for a full 3 months that I started to heal. I am now 6 months gluten free and 3 months strictly iodine and gluten free and I have only one small spot left that doesn't hurt. It has been a beast.

The sources of iodine I had to eliminate are asparagus, fish, shellfish, iodized table salt, canned goods (there is iodine in the lining of cans) any processed food that contains salt (and almost all of them do) no salty chips or nuts, eggs, and dairy can contain iodine. Carageenan is made from a seaweed and it too caused my sores to react. It is in most dairy, cheese, ice cream, milk and sometimes other products. I had no idea I would have to be so strict but DH is one of the most sensitive conditions and it is slow healing. Be strictly gluten free and limit iodine until your sores heal. For me that was several months. Iodine is necessary in the diet and for good thyroid function, but I had to not worry about that for a while if I wanted to get relief from this rash. And since it was on my face, I was strict aobut iodine and gluten and STILL it has taken months.

Even the slightest accidental ingestion of gluten will make my sores react...not just for a day but for weeks. I'm sorry I don't have any quick solutions for you. I use Walgreens brand of pain relieving ointment that is benzocaine for the pain and itching, but it is very temporary. Others have had success with Ionized Silver Ointment from Whole foods.

I am now starting to reintroguce iodine and so far have not had any reaction other than a slight swelling of the one lesion I have left.

If you know this is what you have you can go gluten free now. If you want to try to get tested, you should keep eating gluten until the testing is over. But even if you do eat gluten up to the testing time, the skin biopsy can also be negative even if it is DH.

I spent thousands on Dr.s, medications, ointments, and tried to get tested but it didn't work They wouldn't test me for DH even the dermatologists. I hope you have better luck, but wanted you to know my experience with this rash which is maddening to say the least. I hope your course of healing is a bit easier than my own was.

[susan-2424]

Thanks for your response!! But holy cow, what can you eat? I did schedule a dermatologist appointment, and I am hopeful that they are knowledgeable in DH, so I can get a definitive answer one way or another. (Of course I can't get in for a month) I keep searching for other possibilities and I'm not coming up with anything.

Here are a couple of pictures

Open Original Shared Link

Open Original Shared Link by Open Original Shared Link, on Flickr

Open Original Shared Link

Open Original Shared Link by Open Original Shared Link, on FlickrOpen Original Shared Link

Open Original Shared Link by Open Original Shared Link, on Flickr

[eatmeat4good]

Yes, that is what mine sometimes looks like. Of course I'm not saying for sure that is what it is and I'm glad you have an appointment, but the sort of looks like bug bites and sort of looks like welts is exactly the presentation I had on my legs. On my face it was rather larger lesions that constantly weep and ooze and never really heal. The edges are raised and reddened and it always would break out in larger rings around the original lesion.

I forgot to tell you that sunshine if very bad for DH. It causes mine to flare.

What do I eat? Plain chicken breasts or burgers or steak. Little bit of rice and lentils but not much. Unsalted corn tortilla chips with salsa. Mangoes, berries, and more meat. Extra protein helps with the healing. Oh! And chocolate chip cookies made with almond flour and no salt. Snickers bout once a week. Pretty boring diet and really maddening condition to live with, but when you feel better you realize it is worth every bit of it. I no longer itch and burn at night.

As for the bruising you are experiencing, if you have DH then you have Celiac and that is notorious for vitamin malabsorption. Your bruising could easily be a result of vitamin K or C deficiency and probably other vitamin deficiencies too. You could have your doctor check your blood for A,E,D,K, potassium, calcium,, C zinc, B 12 other B vitamins and folate and iron to get an idea if you are absorbing vitamins properly.

[itchy]

Hi Susan,

As eatmeat4good says, there is a wide variation in how DH presents.

There are some symptoms that are quite typical, but just because yours might be different doesn't mean it isn't DH.

Some examples: stinging or hurting rather than itching; stinging/itching/hurting worse in the evening; lesions running in lines; often worse on elbows, knees, stress areas, around the hairline; sores filled with watery red fluid; dark red or purple blotches around sores;

I'm not as sensitive to iodine as eatmeat4good is. But I live in the UK where table salt isn't iodised, so perhaps I don't get as much.

Like you, I had digestive problems for a years before the rash broke out. Digestive problems went away immediately after I stoppped eating gluten completely.

One of the factors in how long it lasts will be how quickly you learn to eliminate gluten from your diet. I seem to be extremely sensitive to gluten, and it has taken a long time to learn all the pitfalls and hidden sources of gluten. Personally, at home I prefer to eat food that can't possibly contain gluten (meat, fresh vegetables, rice, quinoa, etc) Any manufactured food presents a risk of being contaminated or that I might make an inadvertent mistake. So I prefer to take those risks only when the benefit is high, for example eating out with friends.

I choose to avoid any baked goods, even when they are claimed to be gluten free simply because I have to put my fate in someone else's hands. But don't worry, there is a lot of great food you can eat and enjoy if you are prepared to be open minded. For me, it is the pressure to eat risky foods in social situations that is the greatest challenge. ("Of course you can eat this cookie I made especially for you using this flour that is certainly not wheat, I think maybe it's spelt, or something like that. I'm not sure, but it's definintely not wheat.")

Best wishes. I suggest that you look through the archives of this forum as there is a lot of information there. It won't take long before you are more knowledgeable about DH than most of the medical professionals you encounter, so be assertive and don't be put off if you are convinced by your own experiences. Most of us have been given wrong diagnoses before we finally figured out what it was.

[susan-2424]

Thanks so much for your response. I have decided to go gluten free on my own. I have been told that even though it could take a very long time for the rash to go away completely, I will know in a couple weeks to a month if gluten is the culprit. I am only on day 2 of being gluten free, and I know it won't be easy, but I will figure it out. Luckily I'm a person who doesn't eat a whole lot anyway. I love my bread, but it will be totally worth it if I feel better!

I have a lot of learning to do to know what is gluten free and what isn't. I had read that non dairy coffee creamer contains gluten and I was so bummed! But after doing a quick internet search I learned that my coffeemate creamer is gluten free, it even says so on the packaging! I was pretty excited about that, since I love my coffee, and it just isn't the same without the creamer.

I guess if anything I'll lose a few pounds. Have to look at the bright side, right? If this doesn't work, I guess I am at a total loss as to what could be causing my rash (or whatever it is)

I have an appointment next week at an allergist (which I fear will be a giant waste of time, but I guess it can't hurt since I haven't seen an allergist in probably 20+ years and I do have lots of allergies and asthma). I wasn't able to get into a dermatologist until the end of the month.

As far as it presenting differently in people, my husband talked to a coworker whose wife and kids have it. All three of them have extremely different issues if they ingest gluten. It's all very interesting. What really baffles me is how common this is becoming.

[itchy]

Yes it is increasing, and that's not just anecdotal.

I don't know whether you've read about the study that compared the blood samples of WW1 soldiers with a modern sample and found that antibodies to gluten are several times more common now.

Since the genetic predisposition hasn't changed that quickly, there is some factor in our lives or our environment that is triggering the coeliac response. I haven't heard of a good explanation why.

My own speculation is that it results from the much higher levels of gluten in our wheat now. Conventional plant breeding has changed wheat a great deal in this century. (Not genetic engineering, just regular breeding by selection). Perhaps the extra/changed gluten is causing the genetic predisposition to be expressed more often. As I said, I'm just speculating.

[Hopeful1950]

Don't think of the allergist as a huge waste of time. I went to three dermatologists and they all blew me off as a "neurotic picker". My gut told me that the blistering was caused by something I was ingesting, so I then consulted an allergist who tested me for all the common food allergies plus he tested for other things that I commonly eat. He also tested for environmental allergies. All the allergy tests came back negative. He suspected DH so did a celiac panel which came back negative, but as we all know with DH that happens alot. It just so happens that I had big blistering patches at the time of my appointment, so he could see that something was going on. I sent off a sample to EnteroLab and confirmed that I was reacting to gluten. I brought the test results to the allergist and he agreed that the behavior of the rash + the EnteroLab results meant DH. This allergist crossed over into dermatology for me and I am so grateful. I have not gone back to the dermatologists.

In your case, being able to find out whether your symptoms are caused by allergies would be a step closer to a diagnosis by elimination. I say this because I have had such rotten luck with dermatologists. I think they are all about money and I would have gotten much better treatment if I had been coming in for Botox or Restalin or some of their other "fluff" procedures. (Sorry...soap box)

Best of luck to you.

[susan-2424]

I was almost thinking of skipping the allergist appointment, as I don't want another copay, so I'm glad you posted this. I will still go and see what he has to say. I am now on day 4 or 5 of being gluten free and I am seeing zero improvment, but that's too soon anyway, right? I am getting discouraged. I am honestly hopeful that this is it, just so I can have an answer and know hot to treat this.

What is the EnteroLab that you are talking about? Is it something you do yourself, and if so how do you do it?

[itchy]

Susan, hang in there. :-)

My GI symtoms were markedly better in 4-5 days, but my DH symptoms weren't detectably better until a couple of weeks or so. But after that they improved quite quickly for a while, and the relief was great.

That was with complete elimination of gluten. If you are going gluten free for the first time it is easy to ingest gluten accidentally, as it can take some time to learn to identify all the hidden gluten.

I was surprised how sensitive I was to gluten. As eatmeat4good suggested you might get a quicker response if you also eliminate foods with high iodine content.

[Hopeful1950]

Enterolab does a stool test. You order the supplies on-line then mail your sample to them and they send you a report with the results. It is a little expensive, but I decided it was worth it. I did a package where they do a gene test, a test for gluten sensitivity and a test for casein sensitivity. Some insurance companies will pay for this, mine did not.

There are people on this forum have used EnteroLab. Do a search on the forum to see what their experience has been.

Here is a link to the site so you can check it out:

Open Original Shared Link

Your photos look like the patches I get. Then they blend together into nasty lesions that never seem to heal.

[susan-2424]

I had some bowel issues just this morning, not long after I had my coffee with creamer. I have coffeemate, which claims to be gluten free, but I was wondering if maybe I could have issues with casein as well. This rash did start not long after getting my new Keurig machine, and I have doubled if not tripled my coffee/creamer intake.

I would be really sad to have it go, but I am so miserable itching all the time that I dn't even care anymore! I am going to cut out the creamer completely and see what happens.

[Hopeful1950]

You might be on to something...my daughter breaks out with all the flavored, powdered, coffee-mate type creamers. She also breaks out with the coffee drinks dispensed by the machines at convenience stores. Years ago, before my DH rash, I stopped using fake creamers because I broke out with them. I use only organic Half and Half to make my cappuccino and have no problems with it. Our breakouts from the creamers were usually on our faces and not on our bodies like yours. We think is was the palm kernel oil or one of the other many things that they contain.

Maybe you could call Keurig and see if they have put anything in the formulas that contains gluten. We have a Keurig machine at work and I won't touch it. Don't know what additives are in the drinks.

[kmag]

Hi Susan,

I could have written most of your post. Your rash looks identical to mine, though mine is more forearms and back of calves and has been ongoing for almost two years. My mom has Celiac Disease and suggested it could be DH, and once I read about it I thought the symptom picture mostly fit.

I saw a Dermatologist just last Monday, told him what I thought it was, and he seemed to think it was feasible. His first reaction was that the rash was scabies, but he talked himself out of that afterward. He took a biopsy sample right that day and I go back in two days to find out. I've also had the blood test and scope, both of which came back negative (that was about 3 years ago).

I've been eating gluten free for 5 weeks now (except for some rookie mistakes), and it seems like the rash is improving slightly. The intensity of the itch is down and the biggest bumps are much smaller. I don't have any bruising, but have noticed that anytime I've chafed my skin, that spot will get horribly itchy as well. Since eating gluten free, my GI symptoms are way better, too. Even if my skin biopsy comes back negative, I'm just planning to not eat gluten ever again.

I don't think an Allergist will be much use to you if it's DH. I saw one last week and he pretty much told me there's nothing he can do to help.

Good luck to you!