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Docsgirl

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  1. 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
  2. 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. 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 h
  4. 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
  5. 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
  6. 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 t
  7. 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 e
  8. 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
  9. 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 t
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