Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dapsone Experiences? (from A Newbie)

chestnut

By chestnut
in Dermatitis Herpetiformis

Recommended Posts

Dlapham celiac & DH Newbie
Dlapham celiac & DH
Posted
Well, I am glad that I never experienced that although I do have a hard time gaining weight. Everyone gives me a hard time and I tell them I eat I eat LOL. I just got my blood test result, had to go in for a pulmonary test for my Asthma, she told me it was positive. Just makes me wonder for 20 years my body must have been doing battle with intself inside and out, with no one being the wiser. Now comes the fun part going gluten free. I will though for the benefits it does create, just going to be an adjustment. We will see how my blood test go on a 100mg a day. I am just happy because for the first time in 20 years I am not afraid to shake someones hand. Take Care!!!

Nickie,

Richard's experience is very much like mine. I took dapsone for 20 years+- 1 or 2 and it did wonders for my D/H. In the mid 80's most dermatologists did not know about C/D. I had the one of the best in Oklahoma City. He knew I had D/H by visual inspection, but it was backed up by lab tests. I also was dieing of malnutrition last summer. I have had symptoms of C/D for 58 years, but no one knew what they meant. As was stated, if you have D/H you DO have celiac. I/we tell you this so you can avoid what we have had to go through. Things like pernicious anemia, chronic diarrhea, depleted red blood cells, regular anemia, liver function problems(dapsone induced) impotence(Men only), weight loss, low cholesterol that induced depression and anxiety and the list goes on.

Please listen to those who have been years on this road. Even though Dapsone is a great way to control outbreaks, (I still have to use 25 mg. a day, down from 50 mg a day). I am going to stop that when I am able to do so. I have been gluten-free for 6 months and have had big improvement in my blood count.

Please read up on dapsone at www.webmd.com Or I think that is the correct site. It is not a replacement for a gluten-free diet. Dapsone causes many problems, and exacerbates many of the problems caused by c/d. Had I known then what I know now, I would have stayed on the gluten-free diet in the 80's. But I didn't know and I didn't stay on it, and have paid a price. One price for me that I haven't heard anyone else mention is that I tore the supraspinatus tendon in my right shoulder, better known as a rotator cuff tare. And now am about to have surgery on the left shoulder for a torn biceps tendon. My orthopedist said that c/d is most likely the underling reason they tore.

Please understand that I know some have had less problem then I have. But, please be careful, your health is important, and once lost can be hard to recover.

I have said enough, good luck.

PS. If your doctor really does not know that D/H is CAUSED by celiac disease, I would find a new doctor. Just go to the doctor rant section of this site and read about the abuse doctors have put some through.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Nickie Newbie
Nickie
Posted

Thanks

I think I truly do know more than my doctor about celiac disease/dh, because of reading others ecperience and researching on my own. My doctor does listen to me, in fact I said I want the test she had no problems running the blood tests, they came back weakly positive, so I am a little confused on what that means. I put a call into her to have her explain the results to me, no call back yet. I definitely knew more than the nutritionist that I was referred too. I think I taught her a few things. As far as getting a different doctor it is hard for me. My husband is Air Force therefore we have to go to the base clinic in order to get any care. If we lived away from a base I would then get to choose my own doctor. Plus I have to go through getting a referral to any other doctor I want to go to. One question about the cholesterol though, I just had mine done and came back high actually so a little confused on that one. Of course prior to being diagnosed I ate out about 3 to 4 days a week, so got a lot of junk and fattening food. Not sure if that will change since I have gone gluten free and am not eating out at all. My HDL is higher though so that is good. My plan is to definitely stay gluten free as I do not want to stay on dapsone, I take enough other medication for my asthma, that is quite enough. I have been gluten free since March 10th so I am on my way. Thank you all for your information and time.

Dlapham celiac & DH Newbie
Dlapham celiac & DH
Posted
Thanks

I think I truly do know more than my doctor about celiac disease/dh, because of reading others ecperience and researching on my own. My doctor does listen to me, in fact I said I want the test she had no problems running the blood tests, they came back weakly positive, so I am a little confused on what that means. I put a call into her to have her explain the results to me, no call back yet. I definitely knew more than the nutritionist that I was referred too. I think I taught her a few things. As far as getting a different doctor it is hard for me. My husband is Air Force therefore we have to go to the base clinic in order to get any care. If we lived away from a base I would then get to choose my own doctor. Plus I have to go through getting a referral to any other doctor I want to go to. One question about the cholesterol though, I just had mine done and came back high actually so a little confused on that one. Of course prior to being diagnosed I ate out about 3 to 4 days a week, so got a lot of junk and fattening food. Not sure if that will change since I have gone gluten free and am not eating out at all. My HDL is higher though so that is good. My plan is to definitely stay gluten free as I do not want to stay on dapsone, I take enough other medication for my asthma, that is quite enough. I have been gluten free since March 10th so I am on my way. Thank you all for your information and time.

I can understand your doctor situation, because my dad was in the Air Force until I was 11 years old. I went to the hospital on the Tinker Air Force base which at that time was a very good hospital, but my mother had to arch her neck a few times to get the care we needed.

If your doctor will listen to you and help you with the tests you want, in some ways, that is worth more then her having a lot of knowledge about the disease. That is kind of where my doctor is.

I don't know why cholesterol is low in some celiacs and high in others. I wonder if it has to do with how advanced the disease is in the person as well as how much cholesterol they make normally. Mine has historically been at around 165, but last summer I was down to 100.

I have seen a rather large amount of new research of old research studies where they look at the long term effects of LOW cholesterol on the health and life expectancy of the study subjects. It is very interesting that as cholesterol levels go below 160, the incidents of depression, suicide, anxiety, violent behavior, sudden death, and stroke actually goes UP, and in people over 50 heart attacks go up as well. They also find that the LDL is not a damaging as thought. If you type in "dangers of low cholesterol" on the Google search engine, you will find a lot of interesting information.

I have an 8 page paper that a doctor I know put together. He is an MD that is researching the natural and none invasive methods. If you would like a copy, contact me by private message and give me your fax or email and I will get it to you. It is most informative and interesting.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,192
    • Most Online (within 30 mins)
      7,748
    MariaV
    Newest Member
    MariaV
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...