Do I Have Dh?

[running-girl]

I'm looking for some REAL experts to help me. Who could be more familiar with DH then the folks in here?

I have had a nasty, extremely itchy rash for about 3 months. It started on my upper thighs, elbows and lower arms. Over time it has spread to my upper back, and the outside of my hands and fingers. It is symmetrical. When I get a patch on one arm I get one on the other arm shortly afterwards. The bumps seem really deep. I haven't noticed any blistering, but that might be because I've scratched them so badly. They take forever to heal.

I was diagnosed with IBS a few years ago. I haven't been bugged too badly with intestinal issues in the past couple of years. As long as I keep my diet simple, weight down and keep fit, I feel OK.

I was searching the internet to see what looked similar to my rash and came across DH. My doctor thought is was reasonable and did a blood test, which came back "normal". I find this difficult to believe. Everything I've read just makes so much sense to me. The pictures on the web look just like my rash (I would upload a picture if I could figure out how to).

SO Is it common to have false results from the blood test?

My doctor sent me to a dermatologist. The derm has taken a biopsy of one of the bumps off of my back. I'm waiting for the results. Will this be conclusive?

He has given me some ointment that I hope will clear things up. Both doctors have advised me NOT to limit my gluten intact.

I appreciate any advise you can give me.

Thanks!

[eatmeat4good]

I was never tested because they thought they knew by looking at my rash. Anyway, to answer your question about the biopsy, it is my understanding that the biopsy has to be taken from clear skin next to the lesion to obtain the antibodies. That is where they are. So a biopsy of the lesion itself will not be positive.

Another point is that gluten free is a long term deal if you are going to trial it anyway. It takes 6 months to 2 years to clear up the rash and the gluten free has to be very strict. In addition iodine can activate the rash and iodized salt and iodine in vitamins and fish need to be avoided. I hope your rash clears with the med they gave you but if it doesn't and you still believe it is DH....go for it. Gluten isn't required for health so you have nothing to lose but the rash.

[running-girl]

That's interesting. The dermatologist did agree that it looked like DH. The biopsy was taken from my back, so I'm not sure if he took both the lesion and some material from beside it. It will be interesting when the results come back. I will certainly ask him about it.

I'm shocked - but not surprised - that it can take that long for the rash to heal. I don't see any signs of it slowing down. I assume they wanted me to keep eating gluten while they were doing some testing, but I will definitely try to go off it. Giving up salt will be a tough one for me. I am a real salt-aholic. It looks like I have a lot of homework to do.

thanks for your response. I'll keep sifting through the forum. It has so much information.

[ravenwoodglass]

False negatives on blood tests are unfortunately common. The biopsy as the previous poster stated needs to be from skin next to the lesions not the lesion itself.

My DH was severe and I stopped getting new outbreaks within a couple weeks gluten free. However even a tiny bit of gluten would flare the rash for a couple of years as the antibodies take a long time to leave the skin. I have been gluten free now for eight years and after the first couple years gluten went from giving me a nasty outbreak to giving me just a single blister or two.

As mentioned do avoid iodine for a while after you go gluten free as that will keep the antibodies active. Since iodine is a needed nutrient after my DH got to the point where my outbreaks were very mild I added it back in to my diet.

[eatmeat4good]

I have only been at this 4 months but still have my sores. They are way less intensely itchy painful though. Wow, I hope yours clears up fast like Ravenwood Glass did. I don't know what your Dr. would say about it, but when the pain is bad, I use Walgreens brand of Pain Relieving Ointment which is Benzocaine. It numbs the pain and doesn't bother the sores. Just wanted you to know. Also if you are a salt-a-holic you could switch to uniodized table salt. I did.

[rosetapper23]

By cutting out BOTH gluten and iodine, my DH cleared up in about a week. Of course, it took about a year for the scars to fade away...but I had no new lesions after eliminating both gluten and iodine. I know that everyone heals at a different rate, though. However, if I ingest even the smallest particle of gluten, I get a few lesions immediately.

[itchy]

My experiences are more or less consistent with the other posters.

It is common that tests come back negative. Unless the doctors have specific plans to test you again, I encourage you to go gluten free. (Maybe after getting your results back) I say this because, like me, you seem to have symptoms of both DH and coeliac.

I also had moderate GI symptoms for years while testing negative for coeliac. I was eating mostly gluten free, but not 100% gluten free. Then I got DH and took all gluten out of my diet. Within days ALL my GI symptoms were gone and the DH was getting better.

Having been avoiding gluten for a few years, it wasn't hard to go the rest of the way.

If any ointment clears up your bumps, I suspect you do not have DH. When my DH flare up I take aspirin which seems to reduce inflamation and I use ointments to make the lesions softer and less irritating, but they do not seem to have much effect on the lesions.

I declined to ask for Dapsone because my symptoms were manageable and I didn't want to risk the side effects. My DH was on a plane of improvement for 10 months, then suddenly flared up and I am trying to determine why.

You mention that your bumps are itchy. Many people, including myself, report intense stinging, rather than itching. And at its worse your skin may hurt. I'm not sure if all people with DH experience this.

[running-girl]

Thank you all for your replies!

My family doctor prescribed Elocon Ointment 3 weeks ago and it did nothing but make the skin softer. The dermatologist has given me Clobetasol Propionate which I've only been using for a couple of days. It does seem to have some effect. The lesions are still all there, but some of the inflammation has been reduced, so the really active ones don't seem to be as red. However, I do see a couple new bumps this morning though.

My rash is intensely itchy. At the beginning of each little bumps life cycle it seems to be the itchiest. Actually I generally get itchy before I can see/feel the bump. I have a number that have "calmed down" and they can be sore when I touch them. I had attributed the pain to the damage my scratching has done. I haven't experienced any feelings of burning.

I did have one interesting observation that, I've learned from this forum, also seems to be a symptom of dh. A couple of weeks ago I scalded my arm with steam while cooking a pot of stew. About a week later it started to get VERY itchy and bumpy. The bumps weren't like the blisters I would expect to get from a burn, but rather like the rash I have. They also appeared long after burn blistering should have happened. I've read that skin trauma seems to proliferate the rash. How's that for adding insult to injury.

I will definitely go gluten and iodine free, regardless of what the tests say. I'll wait and let the doctors finish with their tests, and then I will do my own. As much as eliminating gluten sucks, this all makes a lot of sense to me. I want to remain open minded, but I just haven't seen or read anything that explains what I am experiencing like this does.

Thank you,

Brenda

[itchy]

Best wishes. I'm sure that others will agree that eating gluten free isn't that unpleasant and one tends to eat healthier. Eating out is filled with pitfalls.

[YoloGx]

From another point of view I wanted to mention other causes for skin problems such as other allergies or sensitivities like salicylic acid sensitivity as a possible contributing cause for your skin problems.

For instance I get a rash with swelling and crusty itchy patches. Sometimes it blisters if it gets really bad. I also get hive like painful, itchy red bumps. This happens on one side of my crotch, the backside of my bottom and in my ears. Ouch!! I call them the itchy b%$@#ies. I used to get pimples all over my back and in my scalp (which also gets crusty) and along my neck.

I think this reflects a variety of conditions. Going off gluten got rid of the latter symptoms (scalp, back, neck, pimples etc.)

However my other symptoms flared up these last 4 years, 3 of which I have been entirely gluten free. What seems to finally be resolving this issue is going off salicylic acid. I knew I was "allergic" to aspirin--which apparently is entirely salicylic acid. Aspirin makes me get bruises.

What I didn't know is that salicylic acid is in all kinds of fruits and vegetables--and that it was at the root of my current itchy b%$@#ies. Fortunately another poster on celiac.com suggested this might be a real possibility. It turns out to be true. I am way better. It is hard to be entirely salicylic acid free. However I was eating a diet very high in it--with lots of zucchinis, peppers, basil, broccoli and tomatoes from our wonderful garden this last summer.

Turns out salicylic acid was also contributing to my fibromyalgia like symptoms at night, with painful joints and nervous system heebie jeebies that made it so I couldn't sleep. And yes over summer it was even worse!! Now if I happen to have ingested too much salicylic acid (as in almost any for me at this point--which can easily happen)I take an antihistamine so I can sleep. Otherwise it can take hours. It also lessens the skin reaction. Baking baking soda also helps, but usually not enough. I brush my teeth with baking soda by the way.

A reaction to salicylic acid is not technically an allergy--its considered an overdose of medication....nevertheless antihistamines help take the swelling etc. down. What helps even more is just to avoid it of course.

Anything made with almost all herbs can be a problem--especially if they are dried. Peppermint is really bad. I had no idea. In fact this discovery is huge for me since I have been using herbs intensively for years. Go figure! The ironies of life. They both helped me and it appears they were also poisoning me.

Salicylic acid sensitivity can also contribute to ADD like symptoms. I think it was discovered by a Dr. Feingold.

I seem to need fewer supplements finally as a result--which is wonderful!

I can also now eat all kinds of gluten free grains without a reaction, whereas before I couldn't tolerate even brown rice. I can also now eat peeled ripe pears and peeled golden delicious apples, whereas previously I thought I couldn't eat any fruit at all. So this is a vast improvement for me. In addition I find I can tolerate peeled white or yellow potatoes--whereas previously I thought I couldn't have potatoes at all. It seems a lot of the salicylic acid is in the skin of the fruit or veggie.

I also have to be careful of the oils I use. Coconut is out entirely (I even avoid most water purifiers since they run the water through coconut derived charcoal), as are most nut or seed oils. Sunflower, safflower and canola oil are fine, as is butter.

So--consider allergies and sensitivities as well as DH in your investigations. Good luck.

[running-girl]

Wow Yolo, that's quite a story, thank you for sharing it with me. Figuring this out will take an awful lot of dedication.

Your comments about allergies are interesting. I do eat a lot of fruits and veggies, but have never considered a connection. I think I'll have to work through the process of illumination.

This forum is quite amazing - I'm learning so much. It's a little overwhelming.

Thanks for your help.

[mushroom]

In support of Yolo's theory, my celiac sister is also very intolerant of salicylates. I will ask her, can you eat tomato? and she will say, just a taste. She finds a taste is okay but a serving will set her off. She never eats baked potatoes and monitors her salicylate intake very carefully. As an aside, we used to kid our mother about the way she peeled all fruit - maybe she had a problem she had figured out without knowing what it was; she was quite picky about what vegetables she ate too. Will never be able to ask her now. I used to tell her she was peeling off all the goodness

By the way, Elocon and Clobetasol Propionate are medications I am prescribed for my psoriasis.

[YoloGx]

In support of Yolo's theory, my celiac sister is also very intolerant of salicylates. I will ask her, can you eat tomato? and she will say, just a taste. She finds a taste is okay but a serving will set her off. She never eats baked potatoes and monitors her salicylate intake very carefully. As an aside, we used to kid our mother about the way she peeled all fruit - maybe she had a problem she had figured out without knowing what it was; she was quite picky about what vegetables she ate too. Will never be able to ask her now. I used to tell her she was peeling off all the goodness

By the way, Elocon and Clobetasol Propionate are medications I am prescribed for my psoriasis.

Hi Mushroom,

I do think this salicylate thing and celiac or gluten intolerance often goes together. It amazes me how interrelated all this stuff is.

As an aside to you, I still don't tolerate sugar very well. But now I understand why honey is even worse (high in salicylates). Agave gives me horrific migraines--which makes me wonder if it doesn't have a high salicylate content too. Now I wonder if cane (and beet) sugar is high in salicylates also or not.... Am going to look it up now.

[mikyraso]

I am writting this posting after reading some of the postings about DH and celiac disease. My 6 yr old daughter was just recently diagnosed with celiac disease I am wondering if I could have celiac disease given my history. I have been SUFFERING since childhood with EXTREMELY "bad ears". Every doctor I have ever been to has diagnosed my condition as eczema but I am really questioning this.

My story starts from the time I started wearing glasses (about 18 months.) My skin condition first appeared on the back of my ears. They looked like your sliced my ears open with a knife. The eye Dr. told my mother that I was allergic to the bows so her gave her covers for them .That NEVER worked. Then when I was school age the condition moved into my ears as well as the back of my ears. Around high school the back of my ears cleared up but I have NEVER been able to clear up the inside of my ears. I have been suffering for reoccurring ear infections, flaking, scabs that drain and bleed, and EXTREMA ITCHING (I want to rip my ears off & it feels like I have bugs crawling inside my ears), and HORRIBLE PAIN!!

I have NEVER had any time when my symptoms had gone away, my symptoms may have subsided for a couple of weeks or at most a month. In 40 yrs I have NEVER had more than 4 weeks of relief. I have had a LIFETIME of UNSUCCESSFUL treatments. I have more bottles of Cortisone and many other types of drops, topical ointments, even had my ear canal filled with ointments (that treatment lasted on and off for 2-4 years.) I feel like my life is not my own and my ears are in control. I am so EXHAUSTED and I am hoping someone has some advice.

I was also diagnosed with Epilepsy as a child, and I have suffered with endometriosis and unexplained infertility. I know that from reading many books on celiac disease these can be symptoms of celiac disease and I was just wondering if I could have celiac disease. Thanks

[itchy]

Mikyraso, I also have an intensely itchy ear that began to itch at the same time as I started getting DH at the edge of my hairline. It's never gone further than that. Nothing like what you are describing.

Why not stop eating gluten, along with your daughter, and see what happens?

[mikyraso]

Mikyraso, I also have an intensely itchy ear that began to itch at the same time as I started getting DH at the edge of my hairline. It's never gone further than that. Nothing like what you are describing.

Why not stop eating gluten, along with your daughter, and see what happens?

I started today :-) I will see how it goes.

[eatmeat4good]

Yes, you could have Celiac disease.

DH can be anywhere on the body and it can present in many forms.

I was reading the really old posts on here about DH last night.

There were a few people who had their DH primarily in their ears....some had it in their nose.

They had been diagnosed with eczema but only when they went gluten free were they able to heal.

It is well worth a gluten free try. You must realize it can take several months to clear up though, so you kind of have to commit to the diet if you want to see results. You could also see if a Dermatologist will biopsy your sores next to the lesion if you want to be tested for it.

I just wanted you to know that historically on this cite, there ARE people who had their DH lesions primarily in and on their ears. The way you describe the pain is very consistent with Celiac DH.

[mikyraso]

Yes, you could have Celiac disease.

DH can be anywhere on the body and it can present in many forms.

I was reading the really old posts on here about DH last night.

There were a few people who had their DH primarily in their ears....some had it in their nose.

They had been diagnosed with eczema but only when they went gluten free were they able to heal.

It is well worth a gluten free try. You must realize it can take several months to clear up though, so you kind of have to commit to the diet if you want to see results. You could also see if a Dermatologist will biopsy your sores next to the lesion if you want to be tested for it.

I just wanted you to know that historically on this cite, there ARE people who had their DH lesions primarily in and on their ears. The way you describe the pain is very consistent with Celiac DH.

Thanks for responding to my post. It is really good to hear that there ARE some out there with DH in their ears. I have been searching for so long for some answer. Now I have a place to start. Do yo think that I should call my gen Dr. or the dermatologist to ask for a Biopsy? There are so many posts out there and being new it is a little overwhelming trying to figure out where to look for what I need. But I am slowly figuring it out.

[mushroom]

Many primary care doctors are reluctant to do biopsies and will refer you to a specialist for a biopsy (not to say yours is one of them - gp's used to do a lot more than they do today.

[eatmeat4good]

To be honest, I saw 3 dermatologists who refused to do the biopsy.

Even seeing a specialist is no guarantee of getting the biopsy.

It all depends on who you get and how confident they are of their own diagnosis.

The fine line you walk is that DH is not tested for unless there is a high degree of suspicion that it is DH. The high degree of suspicion should be from the Dr. not from you. I had a very high degree of suspicion but couldn't get the Dr.'s to have it.

I was diagnosed with all sorts of things, eczema, acne, fungus, neurotic excoriation, Herpetic Whitlow, Herpes, and back to acne again.

Your GP might be able to make a referral to a Dermatologist and maybe "plant" a high degree of suspicion of DH for you. That is, if you GP believes that it could be DH.

Sorry I didn't answer for so long. Didn't see your post until Mushroom answered ya.

And once you do find a Dermatologist willing to do the biopsy, then you have to be sure they do it right...biopsy the clear skin next to a lesion, and not the lesion itself. Not many know about DH or how to biopsy for it.

Good luck and you are right, it can be overwhelming so feel free to ask anything else you may need to know.

[JodyLee]

I have a very itchy back (no rash) between the shoulder blades and a little lower; since...can't remember not having it. Actually, my back is so itchy that I have grown accustomed to that and deal with it, until someone brushes up against me or scratch a spot, then I scratch til it feels like i'm tearing my skin off.

I have not been tested for celiac, but my uncle (dad's brother) has it and all 4 of his children. I am certain my 9 year old has it too (his test was negative, but he has had a distended belly since he was 1 year old and both of us live with constipation and severe stomach problems along with other issues...

Anyone???

[eatmeat4good]

You might want to consider getting tested.

Or just go gluten free and take your son there too.

It just may resolve all of your problems even if neither of you test positive.

It is so well worth it if your symptoms go away. If they don't you can always go back to eating gluten.

However, you may want to give it a "good strict try" as RavenwoodGlass would say.

It can take several months to get the results you need to see. So I wanted to add the "good strict try" because you wouldn't want to give up 5 minutes before the miracle!

Good luck!

[DenaCP]

I have been gluten free for 10 days now. I have asked my dermatologist for DH testing and am going for biopsy next week. Is it true that the results may be incorrect if I don't have gluten in my system?

[eatmeat4good]

That is what Dr. Peter Green says in his book Celiac the Hidden Epidemic.

It is supposedly the same as intestinal biopsy. Negative tests are likely if you are not eating gluten. The archives here on DH are full of testimony by people who tested negative for DH because they had stopped eating gluten, however, it still took months to heal their DH