DH - Eating gluten

[LLBoll]

My husband has been diagnosed with DH for over a year now. He has been trying his best to be gluten free since we got back from Italy in January of this year. He went to see a dermatologist yesterday (one of the best in the country they say) and she told him that he needed to up his dose of dapsone from 50 mg a day to 100 mg because he still has some rash (he is also 6'6" so she said he was being under dosed). She also told him that while taking the dapsone he COULD EAT GLUTEN. This is the first I've heard of this & I've been researching for months now. Has anyone else been told this? He does not have celiac, only DH. Thanks! 

[ravenwoodglass]

Run, don't walk to a new dermatologist. If he has DH he has celiac. He does need to be gluten free, strictly, to prevent the antibodies from attacking other organs. Did this doctor do liver function tests on a regular basis while he has been on Dapsone? Dapsone is a drug that can have some serious side effects and regular testing needs to be done if he chooses to stay on the drug. The antibodies will clear from the skin the longer he is strictly gluten free and eventually breakouts will be less severe with an accidental glutening even without the drug.

[GFinDC]

Agree with RavenwoodG.  DH is a diagnosis of celiac disease.  Only people with celiac get DH.  Dapsone is supposed to be used as a temporary treatment until the DH rash subsides.  Not as an ongoing medicine.   He should not eat gluten at all as it is the trigger for an antibody attack by the immune system.  DH can be difficult to get under control as it is very sensitive to the smallest amount of gluten.

[LLBoll]

Thank you guys so much for the replies! They have done many tests at multiple doctors & have concluded that he is part of a small percentage that doesn’t have celiac - only DH. Him ingesting gluten does cause the DH though. They have been testing him while he’s been taking this smaller dose & everything seems to be fine. 

[cyclinglady]

Do your your doctors have any studies to indicate that DH is not affiliated with celiac disease?  I cannot find anything except in old journals which are long outdated.  All leading celiac disease/DH research centers and organizations claim that DH is celiac disease.

https://www.beyondceliac.org/celiac-disease/related-conditions/dermatitis-herpetiformis/

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

Granted many celiacs who have DH do not get positives on the celiac blood panel, yet they still have intestinal damage.  

https://www.niddk.nih.gov/health-information/digestive-diseases/dermatitis-herpetiformis

I would find another doctor who is celiac-savvy.  Maybe he was misdiagnosed and does not have DH.  A pathologist should have confirmed the skin biopsies.  Get those reports.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4435051/

Edited November 15, 2019 by cyclinglady

[LLBoll]

Maybe I should edit this to say that he has had no digestive symptoms... sorry I’m new to all this. Thank you for these links! He has had the biopsy & that’s how he was diagnosed. This is the fourth doctor we have been to & the first to tell him he can have gluten. He is so excited & I hate to be the bearer of bad news. He has been eaten gluten for the past two days now... I want to believe the doctor but literally everything I’ve seen says otherwise. Do you guys recommend we go to a gastroenterologist instead of dermatologist? 

[Franceen]

Hi, I have DH - since 2004.  Went completely gluten-free in 2005.  I currently go to a Dermatologist.  I was diagnosed by an Allergist via biopsy.  The first gastro I went to had never heard of DH!  I went to a Gastro recently when I moved to a new state, and she told me to take Lysine -  that it is the cure-all for DH.  OMG.  Other than the gastro's all Dr's have told me to be much more careful in my diet - hidden gluten is rampant these days and so is not telling the whole truth about ingredients (both intentional and ignorantly).  I cannot imagine eating gluten normally now and having to take enough  Dapsone to kill me.  NO, I've never heard a reliable source say eating Gluten is ok for DH! You can go to the Merck Manual (the Dr.'s bible) and read about it.  There is a professional version where you would search for Dermatitis Herpetiformis and a "consumer version" where it is probably under Celiac Disease.  www.merckmanuals.com.    Try to find a dermatologist that has experience with DH - they are out there - mine here in Nevada is wonderful.  

Good luck - DH is definitely difficult.

[kareng]

Just curious - were you at his doctor appointment when he was told he could eat gluten?  Or that he didn’t have Celiac?  

[LLBoll]

5 minutes ago, kareng said:

Just curious - were you at his doctor appointment when he was told he could eat gluten?  Or that he didn’t have Celiac?  

Yes - I try to go to most of the appointments with him. But this was our first appointment at this “specialist”. This is the second dermatologist he has seen. This one was supposed to be more knowledgeable.... 

Edited November 15, 2019 by LLBoll

[GFinDC]

It is actually pretty common for some celiacs with DH to not have severe GI symptoms at first.  They can get severe GI symptoms as time goes on though.  DH is caused by antibodies in the skin.  So the immune attack is in the skin vs the gut.  But there is no guarantee it won't move on to the gut with continued irritation by gluten.  Then he would get both skin symptoms and gut symptoms.  Him eating gluten is a risk for future gut symptoms developing.

I think he should see a GI as well as a dermatologist.  But search the internet for a celiac doctor in your area first.  Many doctors are somewhat ignorant about celiac disease.

Edited November 15, 2019 by GFinDC

[cyclinglady]

I would get a copy of the pathologist’s report from  the diagnosing doctor (it is a good idea to keep all your medical records, including lab results).  If the pathologist stated that the skin biopsy revealed DH (IgA antibodies), then your husband’s diagnosis would be firm.  No need to see a GI.  

I do not have DH, but I can tell you that I had no GI symptoms when I was diagnosed.  Just anemia.  I was lucky my celiac disease diagnosis was caught.  

Dapsone has some very serious side effects.  Maintaining a gluten free diet will not cause harm and will only heal.  I get your husband wanting to have gluten back.     For me, it is not eating it, but I do mourn my ability to travel, cook and eat out without worries.  But that is life.  The amazing thing is feeling good.  

While it takes time on a strict diet, many members report not needing Dapsone.  Please read through the DH section.  You will find valuable advice.  

[Jenna1028]

I'm in the middle of a DH outbreak, and I've been home reading (and reading, and reading, and reading), medical studies and journals, and doing patient research for a few weeks now.

Everything I've read, suggests that patients themselves take to eating gluten when on Dapsone - not because this is recommended, or safe - if recommended, but because patients tend to think it's safe, when all studies suggest, that it is not. 

I've also heard/read that Dapsone is by no means a long term treatment, but rather a temporary aid until the rash clears. 

I opted for the steroid cream route, because I've heard of the side effects of Dapsone and I seem to be overly sensitive to everything - if there's a side effect, I get it. 

I'm currently doing a cleanse with chicken soup and broths, and once done I'll adopt a Paleo diet - which seems to be the best approach for a lot of celiacs, and others with various autoimmune disorders, to maintain a healthy gut. 

Losing food is like losing a friend, (it sucks), but I cannot imagine anything worse than this horrible rash. Your husband's gut needs a detox and a reboot. Going completely gluten free (if he has undiagnosed celiac) is the only way to promote healing. Because celiac is an autoimmune disease, its linked to MS, Parkinson's, Lymphoma, Anemia, etc., and those aren't things to play with. 

I would suggest getting a DNA test (23andme, Ancestry, etc.). It may reveal something the bloodwork hasn't. Some other autoimmune disease with presenting symptoms resembling DH.  I found my celiac through a DNA test, after years of dealing with doctors who belittled my symptoms, misdiagnosed, and many who just didn't take the next logical step. 

Once you get the raw DNA, you can upload it to a website called NutraHacker and it will give you a detailed report about diet, supplements, etc. I took this report to my doctor so she could see the mutations. In the end, we decided on a Paleo diet with several supplements. 

It's good that you're being proactive and searching for answers - listen to your gut and be insistent. I hope he's feeling better soon!!

[GFinDC]

Here is some info on DH and the typical lack of GI symptoms at first.  If he has DH, he has celiac disease.  He may not have gi symptoms, but his body is still making anti-gliaden antibodies.  It's just that those antibodies are attacking his skin instead of his gut.  That's why he doesn't have gut symptoms yet.  But his bodies immune system will adapt to fighting gluten in the gut also.  It may take some time but isn't worth taking a risk on.  Celiac disease can cause malabsorption of nutrients when gut damage happens.  That can make it hard and slow to heal as the body doesn't have the basic tools to heal.  That gut damage is something to be avoided because of malabsorption as well as the pain and discomfort it causes.  In addition people sometimes develop additional food intolerances and even additional autoimmune conditions.  Celiac raises the chances of getting other AI conditions.  If you read people's signatures on the forum they sometimes list the other food intolerances etc that they have gotten.  Joint pain, nerve damage, bone loss, hair loss, muscle weakness, infertility are potential results of ignoring the gluten-free diet.  Celiac can affect the entire body.

https://www.niddk.nih.gov/health-information/digestive-diseases/dermatitis-herpetiformis

and

https://rarediseases.org/rare-diseases/dermatitis-herpetiformis/

Some people have gluten ataxia, and then the antibodies attack the nerve cells causing difficulty walking.  Those people may not have gut symptoms either.  But it is the same gluten immune reaction causing all these conditions.

Edited November 19, 2019 by GFinDC

[Jenna1028]

3 hours ago, GFinDC said:

He may not have gi symptoms, but his body is still making anti-gliaden antibodies.  It's just that those antibodies are attacking his skin instead of his gut.  That's why he doesn't have gut symptoms yet. 

I can attest to this. I have zero gut symptoms, aside from a lifelong battle with constipation. Since I was a child, I’ve had a rash of one kind or another, and feel this was my body’s way of coping with celiac. 
 

Also, when I had a recent DNA test done, they found I was slow to metabolize, which my doctor said is another DNA marker they keep seeing over and over in patients with DH. 

[squirmingitch]

On 11/19/2019 at 10:51 AM, Jenna1028 said:

I can attest to this. I have zero gut symptoms, aside from a lifelong battle with constipation. Since I was a child, I’ve had a rash of one kind or another, and feel this was my body’s way of coping with celiac. 
 

Also, when I had a recent DNA test done, they found I was slow to metabolize, which my doctor said is another DNA marker they keep seeing over and over in patients with DH. 

Constipation IS a celiac symptom Jenna. OR a repeating roller coaster ride of constipation followed by diarrhea.  So much gets "recycled" on the internet --- copy & paste, copy & paste --- that everywhere you look at info. on celiac disease it says symptoms are diarrhea, diarrhea, diarrhea almost as if the ONLY symptom is diarrhea. If you are talking to someone & ask if they've ever been tested for celiac, 99% of the time, they will reply that well, they don't have diarrhea all the time. There are in fact, 200-300 symptoms associated with celiac disease. Constipation is one of them Jenna. Just like people (& non savvy docs) think celiacs have to be rail thin & waif like. Not so!!!!! Celiacs can be that but can also be fat & anything in between. 

Actually, over 50% of diagnosed celiacs did not present with GI issues. 

[squirmingitch]

On 11/14/2019 at 10:07 PM, LLBoll said:

Yes - I try to go to most of the appointments with him. But this was our first appointment at this “specialist”. This is the second dermatologist he has seen. This one was supposed to be more knowledgeable.... 

 

From:

http://www.cureceliacdisease.org/faq/can-a-skin-rash-be-associated-with-celiac-disease/

"Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with more common symptoms of celiac disease."

Please read the entire piece though. See? 60% of us with DH test negative on the celiac blood tests. We also have patchy gut damage that can very easily be missed in even 6 endoscopic biopsies. 

Some other documentation:

 It’s not necessary to perform an intestinal biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive.

Drug treatment is short term, usually until the gluten-free diet begins to relieve symptoms.

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

 

[LLBoll]

Just want to update everyone! Thanks everyone so much for the comments. We recently went to a gastroenterologist who specializes in celiac. He did an endoscopy & confirmed that my husband does in fact have celiac along with the DH. He also confirmed the strict no gluten diet. He was amazed when we told him another doctor had told us otherwise. 

[cyclinglady]

Thanks for the follow-up!  Your post will surely help another DH sufferer.  

I hope your husband recovers fast.

[squirmingitch]

On 1/22/2020 at 7:47 PM, LLBoll said:

Just want to update everyone! Thanks everyone so much for the comments. We recently went to a gastroenterologist who specializes in celiac. He did an endoscopy & confirmed that my husband does in fact have celiac along with the DH. He also confirmed the strict no gluten diet. He was amazed when we told him another doctor had told us otherwise. 

Yep, we sure appreciate the follow up! I am so glad you found a knowledgable GI doc. 

[Felix Nuts Tomcat]

I can attest that I have issues with constipation as well.  Constipation alternating with diarrhea.

[Lobstah]

On 11/14/2019 at 10:33 AM, LLBoll said:

As others have said, this is just nonsense.

Your husband needs and endoscopy.  That is a definitive test to establish celiac disease.  In the meantime, all of this second guessing is absolutely detrimental to his health.

Remember...these people all work for YOU.

 

On 11/14/2019 at 10:33 AM, LLBoll said:

 

 

 

My husband has been diagnosed with DH for over a year now. He has been trying his best to be gluten free since we got back from Italy in January of this year. He went to see a dermatologist yesterday (one of the best in the country they say) and she told him that he needed to up his dose of dapsone from 50 mg a day to 100 mg because he still has some rash (he is also 6'6" so she said he was being under dosed). She also told him that while taking the dapsone he COULD EAT GLUTEN. This is the first I've heard of this & I've been researching for months now. Has anyone else been told this? He does not have celiac, only DH. Thanks!