Thanks so much for all the replies to this previous question. I have a few more questions and thought it would be best just to use this topic.

My daughter finally got her skin biopsy done but the results will take 2 weeks. in the mean time her rash has gotten much worse and spread to her face, scalp, back and feet. She is literally covered from head to toe.

Before they did the biopsy the doctor told me and my mother -in-law that they could test for DH but even if it came back positive it doesn't mean she has celiac disease. But I've been doing alot of reading and that doesn't sound true. Isn't DH a symptom of celiac disease? Or can she just have an allergy to wheat which is causing the DH?

I had taken her off of wheat but her rash didn't seem to get better so we did the biopsy. My husband and his family thought that we should just let her eat whatever she wants until the results come back but the rash is out of control. I explained to them that she can not have any gluten but they keep sneaking it to her. They just don't get it. If I hear it was just 1 cookie or i took the meat off the bread. I'm going to scream. You would think that me having been diagnosed for 4 years they would know what has wheat and about cross-contamination. I finally played the guilt card, " Saying how bad does her rash have to get before you take this seriously." The next day her face was full of spots and her eyes were all swollen. They had given her a piece of pizza the night before. Needless to say we had a long talk and nobody will ever give her wheat again.

So now that the whole family is on board how to I get this under control? She's on a prescription cream but it hasn't been working. Granted she wasn't really eating a gluten-free diet so that could be part of it. But besides the gluten-free diet is there any home remedies that I can do to help clear this rash up? I know there are gluten-free soaps, shampoo's, etc.. but are there special ones for people with DH? Any how soon will I start to see any improvement? Her school is flipping out about her rash but I feel so helpless because there is nothing I can do. So how do I help her?

I know almost nothing about actually dealing with DH.

But one thing I know for sure is that your doc spoke wrong! If you have confirmed DH, then you do have Celiac. Celiac is the only thing that causes DH. A gluten-free diet is required to resolve the rash.

I'm sure other people who've dealt with it will give you tips on how to sooth her in the meantime.

I'm extremely glad to hear that your family is now on board with this! Good luck, and (((hugs)))

Are you still giving your daughter dairy and/or soy? Even if it isn't DH, which is a possibility, all eczema is diet related. A dairy intolerance could be causing this awful rash as well. I know, because some of my grandchildren had absolutely horrible eczema. Especially my oldest granddaughter was covered in it from head to toe when she was little. It cleared up completely when my daughter eliminated all dairy.

Those same children are also now gluten-free, and finally the last bit of eczema cleared up on another granddaughter.

Gluten can cause all kinds of skin problems, including DH. It can cause psoriasis and other types of rashes as well (including awful hives, I get those as well).

I suggest that you not only eliminate gluten from your daughter's diet, but dairy and soy as well. Other foods can be culprits, too (nightshades cause rashes in a couple of my grandkids as well). But the main suspects are definitely gluten and dairy, and should be the first ones to be taken away to try getting rid of the rash.

I know it isn't easy to suddenly remove so many foods. But believe me, it will be worth it!

You know that gluten isn't just in wheat, but rye, barley and triticale as well, right?

Oh, and yes, the only thing that causes DH is celiac disease. But not all people with celiac disease have DH. If somebody is diagnosed as having DH, they automatically have a firm diagnosis of celiac disease. No more testing needed in that case.

I hope you figure it all out.

First of all, there really is no cream that will help. DO NOT bathe her in oatmeal bath stuff. That will make it worse. My dd's allergist (who suspected my dd had dh on her legs) told me to bathe her with Dove soap, and put a mild lotion on her after her bath. If it confirmed DH, your dr can give her some medicine that is an antibiotic called Dapsone. There are lots of side effects, though, so they may not want your dd to take it.
Avoid Iodine! I now get ulcers in my mouth if I eat too much iodized salt (like microwave popcorn that is already salted). Iodine makes DH alot worse. Use sea salt, kosher salt, or non-iodized salt for all your cooking for her.
Taking her off of dairy may be a good thing, at least until she is cleared up. Then you can test it out again on her and see if there is a reaction

It will take some time for the rash to go away. I have been gluten-free for almost a yr, and I still have a few spots, but mine is not confirmed DH. Get a note from your dd's dr saying that her rash is not contagious, and it is being treated to give to her school. Then they shouldn't bother you too much about it anymore.

Good Luck! I hope she feels better soon!

ptkds

It will take a while for the rash to go away. Topicals are really pretty useless in my experience they actually made me itch worse. One thing that always helped me quickly was a short course of prednizone. They start out with a heavy loading dose and then it decreases. It normally is a ten day to two week dose. Your doctor would have to prescribe it but it should stop the inflammation quickly. It is not something to do long term because of the side effects but a short term usage may be helpful. Since she has had the biopsy, and I do so hope they did it right, there should be no problem with her taking it.

"The first suggestion that patients with DH also have an enteropathy identical to coeliac disease (celiac disease) was made in 1967. This was confirmed by showing the enteropathy cleared with gluten withdrawal from the diet and recurred when gluten was reintroduced. It was subsequently shown that all patients with DH have evidence of a gluten enteropathy. However, in the majority of patients the enteropathy is mild and does not give rise to symptoms such as abdominal pain, weight loss and diarrhoea. Thus, all patients with DH have associated celiac disease although it could be described as latent celiac disease in the majority."
Lionel Fry, Emeritus Professor of Dermatology
http://www.dermatitisherpetiformis.org.uk/whatisdh.html

My fear is that they didn't do the biopsy right? Before the biopsy they said it was psoriasis and the cream they gave me hasn't helped. If it is DH then she will have to get on some medication to get the rash undercontrol. So what happens if the mis-diagnose her with psoriasis and just say use the same cream. I'm still keeping her off all gluten regardless of the results but I pray that they confirm and traet her for the right thing.

Also my daughter has been on Lactaid milk since she was born and soy makes her throw up. So they have already been eliminated. Plus I have celiac disease so I know which item are good or bad. But what's the thing with, "nightshades" I've never heard of those before? Are you talking about shades for a window?
Just curious. Thanks

Nightshades are a certain type of food. Tomatoes, white potatoes, red and green bell peppers, the "hot" peppers such as chili and paprika, as well as eggplant belong to the Nightshade Family.

Lactose free and dairy free are 2 different things. Casein is a protein found in all forms of milk, including lactose-free milk. Casein can cause reactions in lots of people. If your dd does have celiac, then she is most likely lactose intolerant. Lactose is broken down by the tips of the villi in the intestines. When a person has celiac, the villi are damaged, therefore the tips of the villi cant do their job. But a true milk (or casien) allergy is totally different thing. Lots of Celiacs have other food allergies such as milk, egg, soy, etc. Hope that clears some things up for you!

Yes, nighshade foods are vegetables (plus tobacco). And Lactaid milk can still cause terrible rashes if your daughter is casein intolerant, rather than lactose intolerant.

My suggestion remains the same: Elimination of ALL dairy, not just lactose, to see if it makes a difference with her rashes. My grandchildren can't have lactose milk either. They'll get horrible eczema from dairy, including lactaid milk, cheese, yogourt, ice cream etc.

In our family we use rice milk (not rice dream, it isn't gluten-free, even though they claim it to be) or almond milk instead of dairy with cereal.