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How Often Would Dh Show Up In Someone Who Is Not Gluten Free?

abby03

By abby03
in Dermatitis Herpetiformis

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abby03 Contributor
abby03
Posted

I've been recently diagnosed with Celiac with no one else in my family ever being diagnosed. I know it's hereditary so it's got me wondering if anyone in my family lived/is living undiagnosed. I was thinking about it earlier and remembered my mom complaining about a rash a few months ago. I think she said it comes and goes every few months and itches really bad. She's been to the doctor for it and they have no idea what could be causing it. She gets it on her knees, thighs, and a few other places that I can't remember. I don't have dh symptoms so I dont know too much about it but I was wondering if symptoms of dh would be constant or if they could randomly come and go like my mom's rash? I know this is going out on a long limb but it was just a thought and I wanted to get more info in case it was something worth mentioning to her. Sorry if I sound stupid- most of my problems are stomach related so I really dot know anything about dh! Thanks for any info/help you guys can give me though!

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squirmingitch Veteran
squirmingitch
Posted

Abby, not stupid questions at all. Short answer: YES, dh can come & go even when you're eating gluten. Mine came & went before I knew what it was & while I was eating gluten --- for years. I believe my mom had it too. She used to get places in her scalp that I NOW know were dh b/c I get the SAME thing & they are dh.

DH can come & go gluten eating or gluten free. But if your mom is getting the rash & it's dh then one day it will likely flare very badly. If it's dh then she has celiac disease & needs to go gluten free. It can take up to 2 years (or more) gluten-free for the antibodies in the skin which are what causes the rash to get out of the skin so it no longer flares. Ppl with dh tend not to have the GI symptoms, instead the immune system attacks the skin. Or they have fewer, less sever GI symptoms. Since you have been dx'd celiac then there is a good chance that what your mom has is dh. A 50/50 chance or better depending where the genes came from you see?

Here are some links with photos of dh:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

Open Original Shared Link

DH can take many forms so if your mom's doesn't look like one of the photos it doesn't mean it isn't dh. The hallmarks are the intense itching, especially at night. An itch like you've never known in your life! It often presents bilaterally, ie: the same places on opposite sides of the body. It stings, burns, itches. There may be water blisters.

She can get a biopsy but there is a false neg. rate of 37% even when a really good dermatologist who is experienced in dh biopsy does it. Also she has to continue eating gluten until the biopsy or it will be negative. If she's been on any steroid creams or pills in the 2 months prior to the biopsy then it will turn up negative.

OR, she can just start eating gluten free.

This info. will get you started. Talk to your mom. Ask questions of us anytime. Invite your mom to the site & she can ask questions. We are here to help.

Here is the link to the dh forum:

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

abby03 Contributor
abby03
Posted
  • Author

Abby, not stupid questions at all. Short answer: YES, dh can come & go even when you're eating gluten. Mine came & went before I knew what it was & while I was eating gluten --- for years. I believe my mom had it too. She used to get places in her scalp that I NOW know were dh b/c I get the SAME thing & they are dh.

DH can come & go gluten eating or gluten free. But if your mom is getting the rash & it's dh then one day it will likely flare very badly. If it's dh then she has celiac disease & needs to go gluten free. It can take up to 2 years (or more) gluten-free for the antibodies in the skin which are what causes the rash to get out of the skin so it no longer flares. Ppl with dh tend not to have the GI symptoms, instead the immune system attacks the skin. Or they have fewer, less sever GI symptoms. Since you have been dx'd celiac then there is a good chance that what your mom has is dh. A 50/50 chance or better depending where the genes came from you see?

Here are some links with photos of dh:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

Open Original Shared Link

DH can take many forms so if your mom's doesn't look like one of the photos it doesn't mean it isn't dh. The hallmarks are the intense itching, especially at night. An itch like you've never known in your life! It often presents bilaterally, ie: the same places on opposite sides of the body. It stings, burns, itches. There may be water blisters.

She can get a biopsy but there is a false neg. rate of 37% even when a really good dermatologist who is experienced in dh biopsy does it. Also she has to continue eating gluten until the biopsy or it will be negative. If she's been on any steroid creams or pills in the 2 months prior to the biopsy then it will turn up negative.

OR, she can just start eating gluten free.

This info. will get you started. Talk to your mom. Ask questions of us anytime. Invite your mom to the site & she can ask questions. We are here to help.

Here is the link to the dh forum:

https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

Wow, thank you so much for all of this information! And it's very interesting that you mentioned that it could be on the same places on each side of the body because that's exactly how my mom's rash is. In fact, she has it on her thumbs right now. I mentioned it to her and told her about it but she didn't take me seriously and just kind of brushed it off. I figured that's how it was going to go. *sigh*

Is there anything I could tell her that might make her want to get tested? Like, are there any other medical problems that could stem from this if it goes untreated? Thanks again for any help.

squirmingitch Veteran
squirmingitch
Posted

ABSOLUTELY!!!!! If she has dh then she IS celiac!!!!! And that means she needs to stop eating gluten FOR LIFE; just like you. Just b/c someone has dh doesn't mean their villi aren't being damaged. It means she can develop any of the maladies which stem from celiac disease. It means she can get lymphoma; in fact celiacs with dh have a slightly higher chance of developing lymphoma than celiacs like you who present only with GI issues. Neurological problems. The entire host of celiac related diseases --- including insulin dependent diabetes, thyroid problems particularly Hashimotos thyroiditis. Other auto immune diseases, lupus is one. Liver problems, kidney problems. The list goes on & on.

Doesn't she understand what celiac disease is? And does to people? If left untreated (not going gluten-free) celiac disease can literally kill you. Doesn't she understand that you didn't get celiac disease out of nowhere? That it is a genetic disease? That means you got the gene from either your mom or your dad or BOTH.

abby03 Contributor
abby03
Posted
  • Author

ABSOLUTELY!!!!! If she has dh then she IS celiac!!!!! And that means she needs to stop eating gluten FOR LIFE; just like you. Just b/c someone has dh doesn't mean their villi aren't being damaged. It means she can develop any of the maladies which stem from celiac disease. It means she can get lymphoma; in fact celiacs with dh have a slightly higher chance of developing lymphoma than celiacs like you who present only with GI issues. Neurological problems. The entire host of celiac related diseases --- including insulin dependent diabetes, thyroid problems particularly Hashimotos thyroiditis. Other auto immune diseases, lupus is one. Liver problems, kidney problems. The list goes on & on.

Doesn't she understand what celiac disease is? And does to people? If left untreated (not going gluten-free) celiac disease can literally kill you. Doesn't she understand that you didn't get celiac disease out of nowhere? That it is a genetic disease? That means you got the gene from either your mom or your dad or BOTH.

Unfortunately I don't think she understands. If she does then she's just playing dumb for fear of having to give up all of her good food (she's not convinced that gluten free can be tasty) and beer. I told her she should get tested and told her what untreated Celiac disease could lead to and that she should get tested and she just kind of made a joke about it. All I'm asking is that she get a simple blood test done or even just try the diet for a few weeks. I'll keep slowly working at convincing her and continue to mention it to her.

At least now I have a little more of an idea of where this *possibly* could have came from. Before this it just seemed completely random with no one else in my family having gi issues and never being diagnosed. Hopefully I'll eventually convince my mom that she really could have celiac. Thanks again for the help : )

squirmingitch Veteran
squirmingitch
Posted

Abby, I'm sorry to tell you this but it's going to be a bigger fight than you think. It is harder for a celiac with dh to get diagnosed than a celiac. I want you to read these 2 threads; they explain much about dh & getting a diagnosis.

https://www.celiac.com/forums/topic/94256-possible-dh-would-like-your-input/

https://www.celiac.com/forums/topic/94313-coping-with-dh/

You might want to take notes.

Now, I will say this: If your mother has dh then one day -- who knows when --- it will run rampant on her & there will be NO WAY she will be able to ignore it!!!!! If she doesn't listen to you before that day comes then she WILL listen to you when it does. I hope she doesn't wait that long but believe me there will come a day when she will have to deal with it or go insane.

Also, the rash may vanish for months or even possibly years at a time but it will come back.

We are still here for you & for your mom too whenever she comes around.

(((HUGS)))

abby03 Contributor
abby03
Posted
  • Author

Abby, I'm sorry to tell you this but it's going to be a bigger fight than you think. It is harder for a celiac with dh to get diagnosed than a celiac. I want you to read these 2 threads; they explain much about dh & getting a diagnosis.

https://www.celiac.com/forums/topic/94256-possible-dh-would-like-your-input/

https://www.celiac.com/forums/topic/94313-coping-with-dh/

You might want to take notes.

Now, I will say this: If your mother has dh then one day -- who knows when --- it will run rampant on her & there will be NO WAY she will be able to ignore it!!!!! If she doesn't listen to you before that day comes then she WILL listen to you when it does. I hope she doesn't wait that long but believe me there will come a day when she will have to deal with it or go insane.

K

Also, the rash may vanish for months or even possibly years at a time but it will come back.

We are still here for you & for your mom too whenever she comes around.

(((HUGS)))

Thanks for the links, squirmingitch. I've started reading through the topics and it sure is a lot good info! I can already see that it's a lot more difficult to get a diagnosis with dh just from reading these two topics. I'll continue to read more about it and then maybe actually sit down with her and see if she'll read up on it herself if I give her some links.

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squirmingitch Veteran
squirmingitch
Posted

Maybe you can start out easy by convincing her to get the gene test.

Is there any history in your family --- blood relatives of diabetes, auto-immune disorders, thyroid, IBS, lupus or perhaps grandparents who died of stomach cancer? Any history of any of the diseases associated with celiac disease?

Here are some links to help with that:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/

Open Original Shared Link

Open Original Shared Link pay special attention beginning on pg. 180

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