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

http://www.celiac.com/gluten-free/topic/94056-dh-photo-bank/

http://dermis.multimedica.de/dermisroot/en/29366/diagnose.htm

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:

http://www.celiac.com/gluten-free/forum/26-dermatitis-herpetiformis/

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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:

http://www.celiac.com/gluten-free/topic/94056-dh-photo-bank/

http://dermis.multimedica.de/dermisroot/en/29366/diagnose.htm

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:

http://www.celiac.com/gluten-free/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.

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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.

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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 : )

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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.

http://www.celiac.com/gluten-free/topic/94256-possible-dh-would-like-your-input/

http://www.celiac.com/gluten-free/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)))

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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.

http://www.celiac.com/gluten-free/topic/94256-possible-dh-would-like-your-input/

http://www.celiac.com/gluten-free/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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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:

http://www.celiac.com/categories/Celiac-Disease-Research%3A-Associated-Diseases-and-Disorders/

http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/34/

http://www.altmedrev.com/publications/10/3/172.pdf pay special attention beginning on pg. 180

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    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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