DH on the face

[Moggy]

So the docs are saying once you complete the course of chemo you will no longer have celiac disease? You are cured and can eat gluten again?

[Docsgirl]

It is entirely possible. The only other, and first patient that used this drug was in his 80’s, so they never did an EGD after he went into remisssion, because you don’t do that to old people. It took 13 months for him to go into remisssion, and he was eating gluten as well. Five years later, he was still in remission and eating gluten!

You cannot have DH without Celiac Disease. It stands to reason that if the DH is gone, so is the Celiac, because Celiac drives DH. 

I am currently eating gluten and am down to one Dapsone per day. I eat gluten, and my face is the only place I have any DH. Prior to Rituxan, I had DH everywhere. At my worst, in 2006, I was covered from scalp to toes! It was so disgusting! So the Rituxan has made a HUGE difference. One Dapsone and sores only on my face wasn’t even anything that was thinkable prior to Rituxan.  It will take time for all of the antibodies to be removed from my system. My antibody levels were very high prior to Rituxan. 

But all the other changes in my body are signaling that the inflammoatory process going on inside me, is no longer as strong as it once was. My hair never grew because of the Celiac, and within two weeks, (meaning after the first two infusions), even my son commented that my hair was getting longer!

I have nothing but great things to say about all of the positive changes in my body, and all are happening while eating gluten!

[cyclinglady]

@Docsgirl,

From my perspective, the only bullying going on in this thread is from you.  Ravenwoodglass is only rebutting some of your abrasive comments.  I think she is trying to make sure that future DH suffers who read this thread will make every attempt to avoid gluten before trying drug treatments.  Refractory celiac disease and/or DH is very rare.    It sounds like you exhausted all common DH treatment possibilities. Dapsone, not only failed to treat your DH, but caused you serious injury (fortunately, it appears to be reversible).  

I do have some questions, because, like you, I have an interest in celiac disease.  Did you attempt the “Fasano” diet at any given time?  Did you ever consider a gluten free household?  Did you eat only certified gluten-free foods?  It seems like current research is indicating that far too many of us are getting gluten exposures despite our very best efforts.  

Again, I do not think anyone is bullying you.  Take a moment to read what is written.  It is unfortunate that communicating online can cause many misunderstandings.  I know that many of my posts are not just directed to the Original Poster, but to a larger audience.  

 

 

[Docsgirl]

For the unpteeth time, I religously followed my gluten-free diet. My entire family was trained as well. At that time, my daughter was a server as she worked her way through college. Anytime a customer had a question about gluten-free choices on the menu, all servers would come get her to answer all the questions about what was/wasn’t gluten-free. She even oversaw food preparation for those gluten-free options to be sure they weren’t cross-comtaminated. When cooking, we were extremely careful about reading every label, every time, and we were all very careful not to cross-contaminate food. We had a color-coded system and separate cooking utensils, toasters, etc. And yes, I ate only certified gluten-free foods. 

I have not heard of the Fasano diet. 

 

 

[kareng]

20 minutes ago, Docsgirl said:

It is entirely possible. The only other, and first patient that used this drug was in his 80’s, so they never did an EGD after he went into remisssion, because you don’t do that to old people. It took 13 months for him to go into remisssion, and he was eating gluten as well. Five years later, he was still in remission and eating gluten!

You cannot have DH without Celiac Disease. It stands to reason that if the DH is gone, so is the Celiac, because Celiac drives DH. 

I am currently eating gluten and am down to one Dapsone per day. I eat gluten, and my face is the only place I have any DH. Prior to Rituxan, I had DH everywhere. At my worst, in 2006, I was covered from scalp to toes! It was so disgusting! So the Rituxan has made a HUGE difference. One Dapsone and sores only on my face wasn’t even anything that was thinkable prior to Rituxan.  It will take time for all of the antibodies to be removed from my system. My antibody levels were very high prior to Rituxan. 

But all the other changes in my body are signaling that the inflammoatory process going on inside me, is no longer as strong as it once was. My hair never grew because of the Celiac, and within two weeks, (meaning after the first two infusions), even my son commented that my hair was getting longer!

I have nothing but great things to say about all of the positive changes in my body, and all are happening while eating gluten!

I have to comment on this -"You cannot have DH without Celiac Disease. It stands to reason that if the DH is gone, so is the Celiac, because Celiac drives DH. "

While it is true that you cannot have DH without Celiac....you can have Celiac without DH.  Getting the Dh under control does not mean that Celiac is gone.  You still have Celiac and, from all the info I have seen, the DH can come back with gluten in the diet.  Celiac does not always manifest as DH.  A few drugs can suppress the immune response to gluten, but taking these immune system suppressing drugs for life instead of a gluten-free diet?  I am not sure we have quite gotten that figured out yet.  I know there are tests and studies on-going to find a safe way to do this. 

[kareng]

8 minutes ago, Docsgirl said:

For the unpteeth time, I religously followed my gluten-free diet. My entire family was trained as well. At that time, my daughter was a server as she worked her way through college. Anytime a customer had a question about gluten-free choices on the menu, all servers would come get her to answer all the questions about what was/wasn’t gluten-free. She even oversaw food preparation for those gluten-free options to be sure they weren’t cross-comtaminated. When cooking, we were extremely careful about reading every label, every time, and we were all very careful not to cross-contaminate food. We had a color-coded system and separate cooking utensils, toasters, etc. And yes, I ate only certified gluten-free foods. 

I have not heard of the Fasano diet. 

 

 

The "Fasano diet" is a diet that is used for people who do not seem to be responding to a gluten-free diet.  This is done before resorting to medications that have their own side effects.  

I am sure you probably did that for a few months.  You may just have not heard of the name "Fassano diet".  Dr. Fassano said at a conference he was speaking at that he would prefer people don't blame it on him!  lol 

 

Towards the bottom, this has an explanation of the foods allowed:

Open Original Shared Link

[Docsgirl]

For me, the DH and the Celiac are inseparable. The DH was how I found out I have Celiac. I had no other Celiac signs. At all. 

For now, all we have is immunosuppressing drugs to help with the inflammation. When you are on death’s doorstep, you will do whatever it takes to live. 

As for the diet, again, it did not work for me. It is the same for many others. The diet doesn’t work. 

 

My quality of life is greatly improved with the Rituxan, so I will stick with that until something better comes along. I had to choose between life and death. I chose life.  

[Gemini]

Rituxan is not chemotherapy, it is an antibody treatment.  I am well versed in this as my co-worker has ITP and has received Rituxan before when his platelet counts have gotten too low.  It is NOT a cure for any autoimmune disease.  It knocks it into remission for awhile.  Some people have longer remissions than others.  They only use this method of treatment in extreme cases of any AI disease/cancer when you get close to dying. Like most drugs, it has serious side effects that can be somewhat counteracted with other drugs before the infusion but I would never classify this as a safe drug.  It's immunosuppressive so does come with risks. 

For those who think that this can cure Celiac or knock it into really long term remission.......no, it won't.  There is no recourse except a strict gluten-free diet, which is much better at giving us complete remission than Rituxan.  For those who do not do so well on the gluten-free diet, there are reasons for that which can be addressed by the medical community. It might even include a few treatments of Rituxan to keep someone from death's door, until they get better enough to deal with the AI problem in another way (which is what they do for ITP) but anyone with Celiac who receives this treatment WILL eventually become symptomatic for Celiac again, if they continue to eat a gluten filled diet.  I can actually see the logic of using this treatment on people who almost reach the point of no return to stabilize them to save their life (my co-worker's experience) but for someone with Celiac/Dh who makes a point of letting people know they have a master's degree in a science field while insisting this treatment means they can and do eat gluten makes me go like this:    

 

[Docsgirl]

Sorry to say, but you are wrong about Rituxan not being able to cause remission for very long. The man in his 80’s was eating gluten and was still in remission after five years. For future reference, Rituxan is used for a variety of things. It isn’t just for one particular illness. Clearly, my use of Rituxan is different from your friend’s use of Rituxan. Regardless of what it is used for, it targets B cells only. So it is used for B cell diseases, one of which is Celiac Disease. I am suffering no side effects, and my body is healthier than it has been in the last 14 years. 

I saw one of my drs today and she was thrilled with my  progress, as last time she saw me, I was in a wheelchair and couldn’t walk! Today, I walked in! All of my drs are very pleased with my progress. We also have a plan to wean off of the Dapsone. So for me, this is a victory. 

Like anything else, this is a new option to try and it saved my life. And like any new option, the skeptics are just that, skeptics. So many things in medicine have met with scorn and ridicule by those who didn’t understand it at first. This thread has shown me that this phenomenon hasn’t changed. 

As for the diet, it did not work for me. I have refractory celiac disease. So going on and on about the diet will not change things for me. There are more and more people like me. We have the very rare combination of all the worst parts of Celiac Disease. So all of the conventional things go right out the window. If you are fortunate enough that the diet works for you, then yay for you! That’s awesome! But we aren’t all like that. Just because it works for you, doesn’t mean it works for everyone. It remains true whether you believe it or not.

Right now, we only know of a few things for Celiac and DH patients: the gluten-free diet, dapsone, and immunosuppressants. That’s it. I went toxic on all forms of immunosuppressants. We tried some other rare things that worked for others as well, and I had a toxic reaction to each of those as well. Rituxan is the only thing that has worked. Ritixan is the only thing I didn't go toxic on.  I’m alive only because of Rituxan. Period. 

So the lesson I have learned is to not share your good news with others because their own fears, and lack of open-mindedness, will get dumped onto you. You will be attacked and told over and over that you are wrong. People will not listen to what you say. They will just project their own situation onto you, not really hearing that you aren’t having the same experience as they are. Listening, compassion, and empathy are all a rare art form these days. That much is most evident at celiac.com. 

The fact remains that all of my doctors, and my insurance company agreed that this was the way to go for me. And it’s working. Luckily for me, I have amazing drs and an amazing employer who helped me to stay alive. And we all worked on it together, as a team. We are all in agreement. We all have faith in this course of treatment. So it doesn’t matter if you all agree with us or not. You don’t get a vote on this one. So go ahead and keep attacking, but I will not be reading your responses. 

I will pray for all you, so that hopefully the next person who brings something new to the table, won’t be attacked like I was, for sharing their success story. I wish you all the very best for a long and very happy life. Take care. 

 

[cyclinglady]

@Docsgirl

I wish you the best.  

I think if you would have stated that you had been diagnosed with refractory celiac disease in your first thread, I think all this misunderstanding could have been averted.  As I stated before, there is recent research that is showing that hidden gluten is being ingested by the most dietary compliment patients.  That has been a hot topic during the last few weeks on the forum.  Also, celiac researchers have found that many refractory patients (typically type I) are actually non-responsive and have been wrongfully misdiagnosed.  Many of those patients have responded to a super strict diet (the Fasano diet which was discussed earlier) and later were able to resume a “normal” gluten free diet. 

My niece who has Crohn’s is on Remicade.  I only hope she has as much success as you.  

Please consider coming back in a few months to let us know your progress.   Refractory celiac disease is so rare.  

[Gemini]

2 hours ago, Docsgirl said:

Sorry to say, but you are wrong about Rituxan not being able to cause remission for very long. The man in his 80’s was eating gluten and was still in remission after five years. For future reference, Rituxan is used for a variety of things. It isn’t just for one particular illness. Clearly, my use of Rituxan is different from your friend’s use of Rituxan. Regardless of what it is used for, it targets B cells only. So it is used for B cell diseases, one of which is Celiac Disease. I am suffering no side effects, and my body is healthier than it has been in the last 14 years. 

I saw one of my drs today and she was thrilled with my  progress, as last time she saw me, I was in a wheelchair and couldn’t walk! Today, I walked in! All of my drs are very pleased with my progress. We also have a plan to wean off of the Dapsone. So for me, this is a victory. 

Like anything else, this is a new option to try and it saved my life. And like any new option, the skeptics are just that, skeptics. So many things in medicine have met with scorn and ridicule by those who didn’t understand it at first. This thread has shown me that this phenomenon hasn’t changed. 

As for the diet, it did not work for me. I have refractory celiac disease. So going on and on about the diet will not change things for me. There are more and more people like me. We have the very rare combination of all the worst parts of Celiac Disease. So all of the conventional things go right out the window. If you are fortunate enough that the diet works for you, then yay for you! That’s awesome! But we aren’t all like that. Just because it works for you, doesn’t mean it works for everyone. It remains true whether you believe it or not.

Right now, we only know of a few things for Celiac and DH patients: the gluten-free diet, dapsone, and immunosuppressants. That’s it. I went toxic on all forms of immunosuppressants. We tried some other rare things that worked for others as well, and I had a toxic reaction to each of those as well. Rituxan is the only thing that has worked. Ritixan is the only thing I didn't go toxic on.  I’m alive only because of Rituxan. Period. 

So the lesson I have learned is to not share your good news with others because their own fears, and lack of open-mindedness, will get dumped onto you. You will be attacked and told over and over that you are wrong. People will not listen to what you say. They will just project their own situation onto you, not really hearing that you aren’t having the same experience as they are. Listening, compassion, and empathy are all a rare art form these days. That much is most evident at celiac.com. 

The fact remains that all of my doctors, and my insurance company agreed that this was the way to go for me. And it’s working. Luckily for me, I have amazing drs and an amazing employer who helped me to stay alive. And we all worked on it together, as a team. We are all in agreement. We all have faith in this course of treatment. So it doesn’t matter if you all agree with us or not. You don’t get a vote on this one. So go ahead and keep attacking, but I will not be reading your responses. 

I will pray for all you, so that hopefully the next person who brings something new to the table, won’t be attacked like I was, for sharing their success story. I wish you all the very best for a long and very happy life. Take care. 

 

While all of us are glad that you are doing world's better, you might fare better on a public forum if you weren't so arrogant towards people who know for a fact that some of what you say is absolutely false.  Sorry you feel that you have been attacked but the only thing that happened here were members gave their educated and experienced opinions and you repeatedly were rude and condescending. It's very common for people who behave like this to sound off yet again and then disappear and not read any responses so if that's what makes you happy, I'm sure we will survive.  Many of us were extremely ill at diagnosis and some of us almost died but that is no excuse for talking down to people, something you do exceptionally well.

For those who want to learn more about unresponsive vs. refractory Celiac, this link has a short but interesting explanation.  The last line on refractory Celiac was something I did not know myself and thought very interesting.

Open Original Shared Link

[sheronlyn]

On 4/8/2017 at 9:11 PM, razzle5150 said:

saw my Dermatogist yesterday and we had a very long appointment . and he said yes you can have DH without Celiac .. he swears by it . also I have break outs on my face and he said I am his 2nd patient with DH that has it on the face. Does anyone else  have it on there face..  I believe in my dr as he has been a dermatologist over 30 yrs. He also said that you can be on a gluten free diet and still break out.   I had another Endo  last Thrus and dr  gastro  called last night and said NO CELIAC and she also said  you can get DH without celiac  too. I am going to try one more thing  when I go back to Mayo in May I made another appointment at the dermatology clinic and see what they say one more time , this time a different dr.  first dr I saw said yes you can have DH without Celiac.

I have been researching DH for years because of my husband's undiagnosed skin condition which has taken over our lives. I have read you can have DH with or without being celiac. You can have DH without having positive skin Iga deposits. A paper I read from a dermatologist who was European trained but lives and practices in USA proved this on himself when he developed a skin condition without being celiac or Iga positive. Even he was shocked. Being gluten sensitive, which is a serious condition, is enough to cause it. Iga deposits can take years to show up in the the top Layer of skin and once gluten free can take years to go hence the skin problems for some can be a problem long after gluten is being avoided.  The reason why DH can be very difficult to diagnose. Especially when most dermatologists and doctors still believe old beliefs. If you are my getting real help from these people and are being told blood, skin and GI biopsy tests are negative do a genetic test for celiac and gluten sensitivity through Dr Peter Osborne Gluten free society USA. Google him he is a wealth of information. I'm in New Zealand and getting my husband and myself tested. Genes don't lie.

[GFinDC]

4 hours ago, sheronlyn said:

I have been researching DH for years because of my husband's undiagnosed skin condition which has taken over our lives. I have read you can have DH with or without being celiac. You can have DH without having positive skin Iga deposits. A paper I read from a dermatologist who was European trained but lives and practices in USA proved this on himself when he developed a skin condition without being celiac or Iga positive. Even he was shocked. Being gluten sensitive, which is a serious condition, is enough to cause it. Iga deposits can take years to show up in the the top Layer of skin and once gluten free can take years to go hence the skin problems for some can be a problem long after gluten is being avoided.  The reason why DH can be very difficult to diagnose. Especially when most dermatologists and doctors still believe old beliefs. If you are my getting real help from these people and are being told blood, skin and GI biopsy tests are negative do a genetic test for celiac and gluten sensitivity through Dr Peter Osborne Gluten free society USA. Google him he is a wealth of information. I'm in New Zealand and getting my husband and myself tested. Genes don't lie.

It's great to have the gene test and know your genetic potential for celiac disease.  But having the genes does not mean you have celiac disease.   About 30% of people walking around the USA have one of the celiac genes, but only about 1% actually develop celiac disease.  The genes do not automatically mean you have celiac.

[ktyler44]

I really don't see where anyone was being a bully. I do see a very aggressive attitude on your part. I'm sure everyone here wishes you well with your treatment. There was just concern that others may get the idea that Rituxan is a safe way to go for everyone. There are many newly diagnosed members on here and they are looking for help through this forum. Please don't be so defensive and aggressive. 

[disgruntledceliac]

The only thing that cleared up the DH on my face was going on the Fasano Diet. I'd recommend it to anyone dealing with this stubborn problem. It takes extra effort to sort out your meals, and it is restrictive, but the results are worth it.