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Docsgirl

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About Docsgirl

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  1. Docsgirl

    DH on the face

    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.
  2. Docsgirl

    DH on the face

    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.
  3. Docsgirl

    DH on the face

    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.
  4. Docsgirl

    DH on the face

    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!
  5. Docsgirl

    DH on the face

    Yes, I am able to eat gluten. Within about eight more months, all of my sypmtoms should be gone and I will be in remission! I have had ZERO side effects. The “worst” thing I had was an all day migraine three days after each infusion. THAT WAS IT! No nausea, no vomiting, no hair loss! Nothing! They give you benadryl and tylenol before the infusion to counteract the side effects of the Rituxan. You sleep a little while and when you wake up, your infusion is nearly done with no issues whatsoever! My hair and nails are finally GROWING! My teeth have stopped breaking! My osteoarthritis has actually IMPROVED, and I can finally wear earrings after years of not being able to! I am regaining muscle mass and strength. I no longer need a wheelchair, I can walk! The memory loss and inability to process even the simplest things is gone! I no longer feel like I am suffocating! When you are on death’s doorstep, you will do whatever it takes to live! This drug was my ONLY hope to live. My birthday was last October. We had a special party because it was uncertain that I would live to see another one. And now? Now I am recovering and am healing very well! I honestly think there is A LOT of lack of understanding about what Rituxan can do for Celiac Disease, and what exactly drives the inflammatory process of Celiac Disease. I see A LOT of fear of the unknown driving everyone’s reaction. Frankly, I am shocked by it! The point everyone is misunderstanding is this, Rituxan targets ONLY B cells. B cells are what drives Celiac Disease. By eliminating the B cells, the inflammation from Celiac stops. The only way to stop Celiac Disease is to target the cause of the inflammation. All this being said, each of us has to do whatever is best for each of us. As more and more monoclonal antobodies are being research for Celiac Disease, it is at the present time, our best hope for a treatment or cure. If the rest of you want to deal with the diet and DH the rest of your lives, when remission may be possible, that is your choice. I respect your choice. Please respect mine.
  6. Docsgirl

    DH on the face

    What is your problem? You really don’t understand what I shared do you? It almost seems you fancy yourself the only “expert” there is! Having a masters degree in Biology makes me more than capable of understanding my illness and it enabled me to be able do my own research for clinical trials and case studies. You also seem to not understand that there are more and more people like me who do not respond to the gluten-free diet. So it doesn’t matter if I eat gluten-free or not, because I will still break out. You also clearly missed that the Dapsone is literally killing me. I almost died three times from it. It has given me hemolytic, iron—deficiency, and megaloblastic anemia, along with methemoglobinemia. All of the anemias had progressed to the place where I had lost muscle strength and muscle mass, I couldn’t lift anything anymore, I couldn’t walk except for very short distances so I was in a wheelchair, and I was prescribed oxygen at 3 liters, 24/7. I also went toxic on all other treatments we tried. I was literally at death’s doorstep from the Dapsone. As for my other organs, they are all in tip top shape, thank you very much. All are functioning just fine! And yes, tests have been run to check organ function. All of my labs are normal except for the ones affected by the Dapsone. I am out of the wheelchair, I can finally walk and lift things again. I now need oxygen only when i sleep. Once I am completely off the Dapsone, I will no longer need the oxygen. You clearly missed that I was correctly diagnosed via immunoassay and EGD in 2006, after being misdiagnosed for the two years prior. In 2006, the biopsy was properly taken from the correct place for diagnosis. You clearly missed that all other treatments failed me and went toxic, and that Dapsone is the only thing that works. If I stay on the Dapsone, within the next year, I would be dead. So I had to find something else, or the consequences would be death. For your information, I was extremely cautious while on the diet! My entire family was also trained on how to cook food to avoid cross-contamination! I never cheated on the diet, and I was super-super careful! I read every label, every time. I also knew which types of maltodextrin were safe from which countries, and which soy sauce from which country was safe, etc. I faithfully followed the diet for five years with no cheating. You also missed the most important question I asked. Do you really think the insurance company was going to pay for the off-label use of rituxan if i was improperly diagnosed, that there wasn’t documented proof of faithfully trying the gluten-free diet, and all else hadn’t been tried and failed? Really? Do you hear yourself? Lastly, my hematologist/oncologist would have said no to the rituxan if he considered it dangerous. My hematologist/oncologist has received many, many awards for excellence in care and in ground-breaking treatments for cancer. So do you REALLY think he would have said yes to this treatment if he thought it was unsafe? NO! He wouldn’t have! You also don’t seem to understand that if the DH goes into remission, then the Celiac Disease itself will be in remission. Without the Celiac Disease, there is no DH. Without Celiac, there are no antibodies. It really isn’t that hard to comprehend. Apparently, you hadn’t thought that far ahead. i chose to share my story to offer hope to others who have had the same experiences as me, and who, like me, are also out of options. I didn’t share so that I could be bullied by others who think their knowledge is the know all, be all, end all, of Celiac Disease! Your course of treatment is no longer the only option available. There are many clinical trials going on looking for other drugs to treat Celiac. Are you going to argue with the researchers that you are right and they are wrong? I have done what is right for me. It will lead the way for others who are like me, and are also out of options. Everyone is entitled to their preferred treatment of choice. I choose to live. I choose take the Rituxan that isn’t giving me any side effects, so that I can get off of the Dapsone and I’m looking forward to a long, healthy life. You also have choices, so you do what is right for you. What you don’t have the right to do, is to be the bully on the block and put down others whose experiences, and treatment, are different from your own.
  7. Docsgirl

    DH on the face

    Actually, the published case study is available all over the internet. Rituxan is an old, very safe medication. My body overreacts to so many medications, but I had no reactions to Rituxan at all! We planned for all possible reactions, and we were all so pleased that I had none! I immediately saw an unexpected improvement in my osteoarthritis, my teeth have stopped breaking, my hair and nails are actually growing, and I can actually wear earrings again! (My celiac disease with DH had made my ears so sensitive, I couldn’t wear any earrings, even earrings for sensitive ears, and real gold earrings, without getting infected earlobes). I count the fact that Rituxan kills B cells a plus because untreated Celiac, especially for those of us who don’t respond to the gluten-free diet, could end up with B cell lymphomas. Now, I won’t have to worry about that! it took 13 months for the first DH patient to achieve remission. So I have a little way to go yet, but I am most certainly closer than I was when I started! There is so much hope here!
  8. Docsgirl

    DH on the face

    Oh boy, yoy certainly are a skeptic aren’t you?! Do you seriously think that I got this far not knowing how to consume a gluten-free diet, including removing iodine, and by not having repeated immunoassays and GEDs? Stop acting like I am a child who doesn’t know anything about Celiac Disease! I hold a Masters Degree in Biology for pete’s sake! Do you seriously think my insurance company would consent to pay for an off-label use of a drug, if there was no evidence that all of the usual things have been tried and failed? Give me a break! You certainly didn't think your comment through. As a matter of fact, the facility where all my caregivers are located, all call me their teacher, as they have never met anyone as informed about Celiac Disease as I am. This includes doctors, nurses, respiratory therapists who draw my monthly ABGs, and all of the nurses in the infusion center. Interns, residents, fellows, and nursing students are actually sent to me to hear my story anytime they are present where I am at the hospital or infusion center. You go ahead with your lifelong gluten-free diet, as my Celiac Disease is going into remission. That is your free will choice. And by the way, my DH is almost clear WHILE EATING GLUTEN! Enjoy your diet. Have a great day.
  9. Docsgirl

    DH on the face

    Hello all. I, too suffer from celiac disease and DH. I do not respond to the gluten-free diet, and all medicinal treatments, save one, were unsuccessful. I am moving into the second phase of my treatment using Ritixan to kill my B cells to allow me to stop taking the Dapsone that is killing me. Literally. I am stuck with Dapsone because my body either had an allergic reaction, or went toxic on all other meds we tried. With Dapsone, I have hemolytic anemia, low oxygen saturation, low iron, and B12 deficiency. At its worst, my MetHemoglobin was 11.8! I was lucky to be alive! Methylene Blue was the only thing keeping me alive. Methylene Blue causes vasoconstriction, so I couldn’t get it intravenously. So we had a port put in, and I had it put into my upper right thigh. You can’t even see it! My highest dose of Dapsone was 300mg per day, and I absolutley couldn’t go lower than 200 and be able to be seen in public. I have nearly died from this three times. Something had to give. But I bring you promising news! I had found a single case study of a man in his 80’s, who seemed to be my twin in his reactions to medications and inability to tolerate Dapsone. His dr gave him Rituxan, and he achieved remission! The drawback was, Rituxan is off-label for DH by the FDA, so insurance won’t pay. I needed four doses to start, and the Rituxan alone, with no other medications or equipment for the infusion is $34,000 per infusion! Each infusion was $36,000, for a total of $144,000 for four infusions!???? A miracle happened, and with the help of my hematologist, the social worker at my infusion center, my superintendent at my work, and the head of human resources at my work, we got the Rituxan covered! After four infusions, I have a zero B cell count, I am down from 300mg a day to 100 mg of dapsone a day, my MetHg is down from 11.8 to 3.1, oxygen saturation and iron levels are up, and I only have DH sores on my face! This has NEVER happened since I was diagnosed in 2006! So far, the Rituxan is working! I should be getting another round in May! Once I am cured, we will be publishing my case study, and I plan to contact the FDA and lobby for a clinical trial so that others can benefit from this treatment! There IS hope, and soon, I should be cured and off of Dapsone completely! When that happens, we publish my case study and I will lobby the FDA for a clinical trial for immediate approval of Rituxan for DH, and honestly, if it cures DH, it should be a cure for Celiac Disease as well!
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