DH on the face

[razzle5150]

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.

[ravenwoodglass]

Maybe what they mean is you can have the rash without the GI issues that most consider the 'hallmark' of celiac. I had the DH rash for many years before I had intestinal symptoms severe enough to warrant attention. Looking back I now know the constant rumbling tummy and constipation were symptoms but I thought they ere just normal for me. I did also have neuro symptoms with the rash but those were thought to be just 'nerves' from a rough home life.

It does take some time for the antibodies to leave the skin. When I was first diagnosed a DH breakout would be the first sign I had that I had been CC'd. I had to be very strict and I dropped iodized salt and iodine in supplements for a time. I also made sure that my toiletries and makeup was gluten free.  I did eventually stop breaking out and now only get one or two tiny lesions if I get severely glutened.

I hope you heal quickly but be patient as it can take some time.

[squirmingitch]

I've had dh on my face. DH can present anywhere on the entire body.

They're wrong. If you have DH, you are celiac. I have to agree with Ravenwoodglass in that they must mean you can have dh without having the GI issues.

You've been gluten-free for how long now? Villi does heal so an endoscopy is not going to show damage after you've gone gluten-free & healed.

[cyclinglady]

6 hours ago, 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.

Okay, I believe you.  You can have DH without having celiac disease according to the government link below.   About 10% of celiacs can have DH (rash and intestinal damage).  But...the treatment is DH is the same -- a gluten free (gluten-free) diet.  Like celiac disease, people with DH are gluten sensitive.  It requires the same life-long gluten-free diet.  If you are skin biopsied and are positive for antibodies, you have DH.  You don't need to have intestinal damage.   DH can ebb and flow, but the treatment  is still the gluten-free diet.  There are medications to help DH, but there are risks to taking those long term.  Diet is most likely the safest long term.

https://medlineplus.gov/ency/article/001480.htm

I do not have DH, but I have read through the DH section.  What I understand (at least from members) is that DH is insanely itchy and unbearable.   I am so sorry you have this awful condition.  I also noted that a temporary diet low in iodine is helpful (as Raven mentioned).   Finally, it takes a long time to resolve.  It can come and go even when you KNOW that it has been maybe months since you were last exposed to gluten. Consider following Jane Anderson on Very Well.  She has both celiac disease and DH (at least DH).  She is very, very, strict on her gluten-free diet.   Her advice is good for really sensitive celiacs too.  Read through the DH Section for more tips.  

So, in closing, you have DH.  Are you not willing to stay on a strict gluten free diet?  Your doctors are right about distinguishing DH vs celiac disease.  Are they not encouraging you to go gluten free as part of your treatment (most important part)?  

I just wanted to add that it was so long ago that doctors thought that celiac disease affected just children who were malnourished.  There is so much still to be discovered about celiac disease.  

[squirmingitch]

Allrighty then, let's do a little detective work here. Firstly, if you dig into the references listed for the link cyclinglady posted - this one:

https://medlineplus.gov/ency/article/001480.htm

You will find they have all been picked up from earlier articles/publishings of studies.  For example, let's follow the trail of the second reference listed since it is also a US Govt. listing. This is the one I'm talking about:

Cardones AR, Hall RP III. Pathophysiology of dermatitis herpetiformis: a model for cutaneous manifestations of gastrointestinal inflammation. Immunol Allergy Clin North Am. 2012;32:263-74. PMID: 22560139 www.ncbi.nlm.nih.gov/pubmed/22560139.

Note the year on that reference. It is listed as 2012. The link at the end of that reference leads you to here:

https://www.ncbi.nlm.nih.gov/pubmed/22560139?_ga=1.201277867.466001716.1476489003

If you look at the top, you will see the date listed as May 2012. But wait.....that date of May 2012 is only the date it was published in PubMed.gov. So let's Google & see where this thing actually comes from. We Google the title of the study:

Pathophysiology of dermatitis herpetiformis: a model for cutaneous manifestations of gastrointestinal inflammation

Ah, we see the second 2 listings there have dates of 2011. So we continue to follow the paper trail. Let's click on the second on there. This is what we get:

http://www.derm.theclinics.com/article/S0733-8635(11)00038-6/abstract

We look at the top & see this study was published in July of 2011; 10 months prior to the listed reference in the ncbi link originally listed. So we know that this article was written sometime prior to July of 2011. Why is the dating of this important? In this particular case, it is very important because of the subject of the OP's question & the contention of her doctors which is that you can have dh without celiac. 

The date is important because new guidelines were established for nomenclature & classification of celiac disease in 2012. Prior to that time, there was a certain amount of doubt that dermatitis herpetiformis was seen strictly in celiac disease alone. As research became available then it was widely determined that dh does indeed occur only in celiacs.  See this for evidence of when they changed the guidelines.

https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-10-13

The Chicago Celiac Disease Center states that dh IS celiac disease in no uncertain terms. It doesn't get any more cut & dried than this:

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

http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/

I might mention that up until the new guidelines came out; a diagnosis of celiac in regards to dh required a positive dh biopsy AND a positive endoscopic biopsy or positive blood work. With he new guidelines in 2012, they dropped the other requirements and all that is required is a positive dh biopsy.

And finally, there is this research that I did back in August of 2012. The UK link doesn't work anymore as they have an entirely new website now than they did back then.

 

[cyclinglady]

Squirmingitch, you must read a lot of detective/mysteries!?  I did not think to look at dates.  I do know for sure that I am not knowledgeable about DH, but most of my research indicates it is related to celiac disease.   Glad you were able to shed new light on the subject.  I am concerned that Razzle, who has stated in past threads that she has been on a gluten free diet for a year, is getting cross contaminated somehow (e.g. does she eat out). 

 

 

[squirmingitch]

1 hour ago, cyclinglady said:

Squirmingitch, you must read a lot of detective/mysteries!?  I did not think to look at dates.  I do know for sure that I am not knowledgeable about DH, but most of my research indicates it is related to celiac disease.   Glad you were able to shed new light on the subject.  I am concerned that Razzle, who has stated in past threads that she has been on a gluten free diet for a year, is getting cross contaminated somehow (e.g. does she eat out). 

 

 

Sometimes I am like a terrier. LOL!

Razzle, aren't you on Dapsone? I see you were or are and the last I can find is that you were up to 100mg per day. I have read you can go up to 300mg. per day. Perhaps they should up your dosage?

We had one gal on here who had been dx'd with dh 20 years prior & had been taking Dapsone for 20 years while continuing to eat a normal gluten diet. She was never told that she needed to eat gluten free. For that 20 years, the Dapsone completely controlled her dh.

Razzle, have you ever had an endoscopy with biopsies or have you only had blood tests? Can you tell us which blood tests they ran for celiac? Can you post the results here? If you had an endoscopy, what were the results and had you been gluten free prior to the endoscopy?

[elefky]

I originally had it on my face and scalp. (22 years ago)  First biopsy with dermatologist came back as folliculitis.  Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH.  She started me on Dapsone (100mg/day) and gluten free diet.  Now I take 25-50 mg/day.  My understanding at the time was that DH was the skin version of Celiac.  Did a lot of research on my own.  I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH  IS a diagnosis of Celiac, even if no other symptoms.    So I stay gluten-free

 

[razzle5150]

yes I have had 3 endoscopy with biopsies   and I can post results  here but have to figure out how to do it .. and yes I did take Dapsone  200 mg  for 3 months and it did absolutly nothing so quit taking it ...  I am going back to Mayo on May 18 so we will see what they say this time.   keep ya posted 

[MinNYC]

Im new to the lovely world of DH. It came on like gang busters - elbows, knees, buttoxmand then rapidly spread down my thighs and the itching was crazy with bumps and blisters. Then the size and quanty of new bumps  got smaller but they literally went from the bottoms of my feet to the top of my head - skipping my lower legs, arms and luckily  my face. HA! It fooled me! Now about 5 weeks  later as my  rash is fading to look like bruise marks (although they redden after a shower) my knees (front and back) have the rash again and this time my face - esp along the hairline, behind my ears and down my cheeks. Im a 55 year old with what looks like crazy acne! At least its lots less itchy - more like bugs crawling on me vs living under my skin! 

Tell me please - as Im far too vain for this to last too long - Do medicated washes like clearasil help the bumps to dry up faster? How about laying in the sun? HAs anyone used self tanner, tanning beds or spray on tans to conceal this?

 

 

[kareng]

1 hour ago, MinNYC said:

Im new to the lovely world of DH. It came on like gang busters - elbows, knees, buttoxmand then rapidly spread down my thighs and the itching was crazy with bumps and blisters. Then the size and quanty of new bumps  got smaller but they literally went from the bottoms of my feet to the top of my head - skipping my lower legs, arms and luckily  my face. HA! It fooled me! Now about 5 weeks  later as my  rash is fading to look like bruise marks (although they redden after a shower) my knees (front and back) have the rash again and this time my face - esp along the hairline, behind my ears and down my cheeks. Im a 55 year old with what looks like crazy acne! At least its lots less itchy - more like bugs crawling on me vs living under my skin! 

Tell me please - as Im far too vain for this to last too long - Do medicated washes like clearasil help the bumps to dry up faster? How about laying in the sun? HAs anyone used self tanner, tanning beds or spray on tans to conceal this?

 

 

So..you have had them biopsied and they are DH?  Going gluten free is the only " cure" for DH.  Dapsone , from your doctor, can help

[MinNYC]

Kareng-

I guess this is an okay thread to "chat." Sorry in advance to other "DH on the face" people for going off topic for the next few paragraphs.

Biopsied - yes. And seemingly properly but the tests came back "Immunofluorescence studies are negative", "superficial and deep perivascular dermatisis" and " features are those of a hypersensitivity disorder".

However,  i do have a history of gluten sensitivity - excessive tiredness, over frequent bathroom trips and occassion deep blisters on my posterior - all of which cleared up when i went gluten free a few years back. Unfortunately i slowly went back to gluten. This recent outbreak was completely text book - bilateral and distinctively starting on elbows, knees and tush - i can find no other rash that appears in those 3 areas. It also itched like crazy. And finally, the dermatologist who at first said he hasnt seen a new case of DH in decades had to admit when he examined me that it actually looked like it could in fact be dh.

A clear decisive DH diagnosis would have, in many ways, been easiest. But, Ive learned to go with my gut. Too many points match to dismiss. And, it seems Im not alone. Many here have been misdiagnosed. 

As for going gluten-free - for the 11 days between rash outbreak and biopsy results, i was gluten free, corn free, iodine free, sugar free, raisin free, basically food free and got much better. Just after i got the negative dh results i started back with some gluten and corn and then got my new break out. So, as of June 2, i have gone back to gluten free, corn free and lowish iodine. Will see what happens in two weeks - if necessary ill eliminate more.

I prefer to avoid prescription meds when possible. And, because of possible side effects plus backlash when stopped, my personal preference is  to avoid Dapsone 

Okay, so thats me and my situation in a nutshell. Feel free to PM and Ill answer any other questions. I greatly appreciate others insight, experience and feedback.

 Now, back to the point of this thread: what works to get rid of or even cover up these darn things on one's face? CLearasil like washes? Laying in the sun? Has anyone tried tanning beds, spray tans and/ or self tanning creams?

Thanks.

[MinNYC]

Trying again.... Does anyone with DH on the face have a method of camouflaging it other than straight makeup - self tanner, spray tans, even trying for an actual tan? 

[squirmingitch]

Was your dh biopsy done correctly? IE: Taken from a CLEAR area ADJACENT to an active lesion NOT ON a lesion.

NO, I have not found anything that camoflauges dh until the places begin to fade & then of course makeup can help it to be less noticeable. I have not tried tanning beds, spray tans or tanning creams. Thankfully my dh has not hit my face too badly for long periods at the time.

[cyclinglady]

21 hours ago, MinNYC said:

Trying again.... Does anyone with DH on the face have a method of camouflaging it other than straight makeup - self tanner, spray tans, even trying for an actual tan? 

I would never recommend tanning beds or even getting a tan.  Watched my friend die from Melanoma leaving a stricken husband and children.  

Try green concealer under your foundation and avoid gluten like the plague!  

[F250IDI]

I had some DH on my face but it was hidden by an existing goatee...

[Docsgirl]

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! 

[ravenwoodglass]

3 hours ago, Docsgirl said:

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! 

This is a very powerful drug that supresses the immune system. It is not a cure and if you choose to do so it is likely that you will need repeat infusions.

You say the gluten free diet didn't work for you. Did you drop iodine foods when you went gluten free? How gluten free were you? Folks with DH have to be very strict especially at first to avoid CC and to make sure their food is being prepared safely.  Were you put on the Dasone at the same time that you were put on the diet? If so then you may experience some rebounding after the Dapsone is stopped but that would resolve.

Have they run repeat panels on you and redone your endoscopy to see if perhaps gluten is sneaking in somewhere?

I do hope you get relief that is long lasting. Personally the risk of the drug would not be worth it to me. But then the risk of the side effects of the Dapsone kept me away from that also. I had very severe DH for most of my life. It took a lot of time but I did heal with the diet and iodine avoidance. IMHO there is no way this would be a cure for celiac. A very expensive and risky treatment maybe. I'll put up with the diet instead.

[Docsgirl]

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. 

[cyclinglady]

@Docsgirl

I am sorry that you were diagnosed (from what you have described) as refractory DH.  It must be very difficult for you.  

Thank you for sharing.  Celiac.com reported on this one clinical presentation a year ago.  I am sharing this so that others can learn:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/dermatitis-herpetiformis-skin-condition-associated-with-celiac-disease/can-rituximab-treat-recurrent-dermatitis-herpetiformis-r4018/

I am glad your DH is improving.   It is a shame that the much safer gluten free diet did not help.     Many people come to this forum thinking they they have been carefully following a gluten free diet but have been exposed to hidden gluten.  They often have been mis-diagnosed as having non-responsive or refractory celiac disease.    Ravenwoodglass is right that this drug is very powerful and has some serious side effects.    Obviously, the benefits out weigh the risks in your case.  

Keep us posted of your progress.   I wish you well! 

[Docsgirl]

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! 

[ravenwoodglass]

9 hours ago, Docsgirl said:

  

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. 

Sorry I didn't realize you were an expert on the subject of celiac and DH. With new posters we have no way of knowing how long they were diagnosed or how compliant they are with the diet. Folks with DH tend to be very sensitive to even the tiniest amount of gluten. It can take time for the antibodies to leave the skin. In my case it was 5 years before a bit of CC didn't reactivate but for the last 12 years I only get one or two small blisters with CC, thankfully as I was covered in it at diagnosis and for most of my life.

Since you are not on the diet I hope the antibodies that your body is producing to gluten are not attacking other organs. Glad you are happy with the results of taking this really expensive and dangerous drug and hope you remain well. For others that may consider the diet too restrictive and may be considering using this med as a 'cure' for their celiac I am providing a link to this drugs side effects. Personally I would rather eat gluten free. Good luck to you.

Open Original Shared Link

 

[Docsgirl]

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. 

[Moggy]

Docgirl, im not sure ive understood correctly. You were diagnosed with celiac disease and dh. You are on an immunosuppressive drug which has helped the symptoms, because you immune system is repressed by the drug, and you now eat gluten?

Are The doctors claiming you will be cured by the drug, be able to stop taking it, and be able to eat gluten?

...edit...I just checked out the drug. Its chemotherapy, with all the accompanying side effects. No way on earth would I go for this. However im so glad you are on the mend and feeling better.

 

[Docsgirl]

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.