Just discovered DH and it's what my husband has

[TDZ]

Hello, new here and new to the whole thing!

My husband has been battling this rash and assorted digestive issues for years. He was diagnosed with contact dermatitis by the dermatologist, had some steroid injections and various creams over the last couple of years, and then in November he went to the ER and they said eczema and gave him steroid pills. This was after a huge bloom that pretty much hit him from head to toe, where it had been mostly arms and legs before. He finally concluded he was having problems with gluten and dairy, and made an effort to drop those from his diet. It wasn't perfect, but we got him mostly gluten-free and dairy-free. 

Then he finally went in to the doctor for a food allergy test. Celiac came back negative (although a pretty high negative, over a hundred points higher than my own and I'm not allergic to anything), and the food allergy panel came back with everything lit up except the fish -- and "highly allergic" on wheat and cow's milk, along with a high "moderate" on shellfish. All the nuts, all the proteins, everything. 

However, when I started looking at the celiac test yesterday, I realized it says a gluten-free or low-gluten diet will normalize it -- and he'd been mostly gluten-free for at least a couple of months. So I started digging, and suddenly came up with this DH thing. I cannot imagine why we've never run across it before, because we've googled everything to do with rashes that anyone could imagine, over the last year or so. But lo and behold, there it is -- everything about it is exactly what he has. You all sound just like him, with the cold water and the ice packs and every other thing that everybody is doing to try and stop the itching. 

Now the problem is how to get the diagnosis -- I'm assuming it takes a diagnosis to get the Dapsone prescribed, and he would apparently have to go back on gluten for two or three months to get the skin biopsy test to come up positive, which he REALLY doesn't want to do, because it has been getting better with this experimenting. Still a lot of infuriating bits that aren't going away and keep flaring up, but he doesn't want to blow up again and have to start over. I work in the doctor's office, and I did put a note through to the doctor to ask him to look into it, but that's always risky because doctors don't like when patients say, "Hey, I did your job for you, here's what we want." But there's a chance he might be willing to try the Dapsone, and it appears that we'd know pretty quickly if it was working. 

Anyway, I'm looking forward to mining this place for tips and advice in figuring out where we go from here and how to accomplish it. Sorry you're all suffering from this hideous thing, but thanks for being here!

[GFinDC]

Hi TDZ,

My understanding is the same, a full gluten challenge is needed for the DH diagnosis.  The method the use for DH is to take a skin biopsy from next to a lesion, not on it.  They check the biopsy for IgA antibodies.

I don't know of any way to shortcut the process and avoid eating gluten to get tested.  There may be a test some  day that doesn't require it, but for now I don't think there are any out there.

One thing he might not have tried is avoiding iodine.  Some of the members with DH find iodine makes the rashes worse / longer lasting.  He'd need to look up iodine containing foods and avoid them.

I suggest talking to the doctor and asking for a dapsone RX.  He may as well try it since it might help  Dapsone is a temporary treatment though and not a long term solution.

Welcome to the forum!

[squirmingitch]

And he needs to be super strict in his gluten free diet! SUPER strict, not just low gluten. No cross contamination, NONE. 

I am so sorry, there are no short cuts with the testing. It flat out sucks but there you have it. 

Welcome to the forum!

[TDZ]

I was just reading some of the biopsy threads, and I wonder -- he has lesions, all over, and has had for a couple of years to varying degrees, so even if the celiac blood test was negative due to his recent gluten-free diet, would they still be able to find it in the biopsy? Because there are lesions to biopsy next to -- those haven't stopped. Maybe he wouldn't have to go back to gluten to get the biopsy?

[Alaskaguy]

TDZ, I am not a doctor nor any sort of expert here, but my experiences have largely mirrored those of your husband, except that I am 12 months ahead of him on the gluten-free diet (and now recently on the Fasano Gluten Contamination Elimination Diet --- you can look it up here).  But one thing that I have repeatedly read is that neither the blood test nor the skin biopsy are conclusive for a diagnosis of DH, with a relatively high "false negative" rate, of maybe 20% to 40%.

In my case, I consider the complete resolution of my former life-long GI symptoms, and the significant (but not yet complete) improvement of my skin condition, on the gluten-free diet to be a positive diagnosis of Celiac (there is also my lifelong problem with weak and brittle dental enamel, which went unrecognized by both my dentists and my doctors).  And note that while many different GI problems can masquerade as Celiac "Disease" (it is really more of a syndrome and not a disease, in my opinion), there is little if anything that I have ever been able to find that can mimic all the symptoms of dermatitis herpetiformis.  And having dermatitis herpetiformis IS by its very nature a definitive diagnosis of having celiac disease as well.

[TDZ]

Yeah, I think the only reason to bother with trying to get a diagnosis is if it's needed in order to get the Dapsone, which would be a lifesaver for him in stopping or helping the itching while he gets his diet more in order. He's had continuous rash and lesions and blisters over large to larger parts of his body for a couple of years, and the itching is driving him insane. 

We do have an appointment with his PCP this afternoon, to try and talk him into trying the Dapsone -- seems it would tell the tale within a matter of days, so it couldn't hurt much to try, and it would hopefully be a godsend.

[Alaskaguy]

17 minutes ago, TDZ said:

Yeah, I think the only reason to bother with trying to get a diagnosis is if it's needed in order to get the Dapsone, which would be a lifesaver for him in stopping or helping the itching while he gets his diet more in order. He's had continuous rash and lesions and blisters over large to larger parts of his body for a couple of years, and the itching is driving him insane. 

We do have an appointment with his PCP this afternoon, to try and talk him into trying the Dapsone -- seems it would tell the tale within a matter of days, so it couldn't hurt much to try, and it would hopefully be a godsend.

Well, TDZ, I certainly hope that your husband is able to get some Dapsone to quickly ameliorate his DH (and that it does not have too many adverse effects on him, either). 

It sounds like your husband's DH is worse than mine ever was, so I can only imagine the ongoing agony that he's been dealing with.  To call DH "just an itch" would be like calling am amputation "just a scratch", i.e., probably nobody who has not experienced it can imagine how frustrating, distracting, maddening and depressing it can really be.

[squirmingitch]

4 hours ago, TDZ said:

I was just reading some of the biopsy threads, and I wonder -- he has lesions, all over, and has had for a couple of years to varying degrees, so even if the celiac blood test was negative due to his recent gluten-free diet, would they still be able to find it in the biopsy? Because there are lesions to biopsy next to -- those haven't stopped. Maybe he wouldn't have to go back to gluten to get the biopsy?

NO. Just like for the serum panel, you have to have been eating a full gluten diet for 3 months prior to testing. The dh biopsy requires the same time frame.

http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/

http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

And ask me how many times people have thought that because there are lesions, they would still be able to get a positive biopsy. And ask me how many dermatologists don't know either. 

[squirmingitch]

60% of those with DH test false negative on the celiac serum panel. 

http://www.cureceliacdisease.org/faq/what-is-dermatitis-herpetiformis-dh/

A positive dh biopsy is a dx of celiac disease, no further testing is needed. The dh biopsy alone is definitive.

http://www.cureceliacdisease.org/faq/how-is-dermatitis-herpetiformis-dh-diagnosed/

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

Now, I want to talk a little bit about Dapsone. It's not a magic potion. It carries a lot of risks. It has some real negative points. There are a lot of potential side effects of Dapsone, including a (gulp) skin rash. Lots of people who have come through this forum have tried Dapsone & many had to quit it b/c of side effects. Some do okay on it but many more do not. 

https://www.mayoclinic.org/drugs-supplements/dapsone-oral-route/side-effects/drg-20063327

 

You need to have labs done periodically to make sure Dapsone is not interfering with your platelets or liver as it can do such, also your iron needs to be monitored as Dapsone can cause anemia.

NOTES: Do not share this medication with others.Laboratory and/or medical tests (e.g., complete blood counts/platelets, liver function tests) should be performed periodically to monitor your progress or check for side effects. Consult your doctor for more details.Iron, folic acid, and vitamin C might reduce the risk of developing a certain serious side effect (anemia). Ask your doctor for more details.If you are using dapsone for dermatitis herpetiformis, a gluten-free diet may improve the condition. Consult your doctor for more information.

https://www.medicinenet.com/dapsone_dds-oral/article.htm

 

Finally, while Dapsone may work to relieve the dh rash, that can fool you into thinking you are doing very well with making sure you are eating completely gluten free. We've actually (I swear!) had one person on here who was on Dapsone for 20 years!!!!!! Since childhood, but their doctor NEVER told them they had to eat gluten free, that they were celiac. So, they ate gluten all those years & the Dapsone kept them from knowing they had a problem b/c the Dapsone kept them from getting the rash. She ended up with lymphoma from the untreated celiac.

My point is that you won't know when you're getting glutened or cross contaminated. That carries it's own risk. You will have no canary in the coal mine. 

 

 

 

[TDZ]

Thanks for all that!

No luck from PCP anyway -- just a referral to GI to go along with the referral to dermatology, and we're not sure about going to either one if it's just going to require months more of gluten. He's already at the end of his rope with two years of itching all over, so it's a bit much to ask.

Presumably endoscopy would show intestinal damage, though, without adding more gluten, since it should take a lot longer to heal? He definitely has intestinal issues along with the DH -- he's had far more years of bloating, discomfort, diarrhea, constipation, the works. So the GI might still be of use. And a good idea, even if the Dapsone turned out not to be, just for finding out the extent of the damage and if anything else is needed.

[squirmingitch]

He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh. 

Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten free diet. Period. No one is going to give him any special meds to heal his gut --- they don't exist or we'd all be on them. 

Unless your hubby is willing to do all the gluten challenges then my advice would be to go absolutely, pristinely gluten free and I mean be rabid about it. No eating out, no eating at other people's houses unless he's brought his own food. No exceptions! I don't care if your daughter made it. Friends & relatives mean well but they do not know all the rules & it's super easy to screw up w/o knowing it. Take ZERO chances. DH is ultra sensitive to the tiniest amount of gluten. If you haven't already, then I would highly suggest you take the household gluten free. That will keep him safest. 

[laf2005laurie]

I had itching after being diagnosed, that nothing otc helped. Then I got anxiety and was treated for that with HCL the ingredient in anti-histamines. Antihistamine might have helped the itching but I didn't know then.

I made a bath recipe to sooth skin after getting bit up in the garden, that called for pine needles- and a couple flowers of which I only could find one.  Soon I found just Pine needles did the trick. I put the fresh needles and branches into a pot, cover with water and let boil for a few minutes before dumping all into the tub. Soak for half hour.  Itch will be gone. It also repells insects. Pine has sulfur and is a antibiotic, antifungal.