Jump to content

  • 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 And Excersize...

MGoers37

By MGoers37
in Dermatitis Herpetiformis

Recommended Posts

MGoers37 Rookie
MGoers37
Posted

Hi, to start this off first i'll give a little information about myself since im new to these forums...

Im a 17 year old, male, actively engaged in varsity swimming, muscular build, who had just been diagnosed with dermatitis herpetiformis two weeks ago. I had first noticed symptoms in october of this year, so from what ive been reading the doctors caught it somewhat early, and also that it's rare for someone as young as me to have this.

Now my question is concerning the use of dapsone. wherever i have read the side effects, dapsone in more cases than not, decreases the amount of hemoglobin in the bloodstream by at least 2 grams. My doctor has reccomended i take dapsone immediately after im done with my regiment of prednisone. Now i swim 6 days of the week, over 3 miles a day, and i work to the point of sheer exhaustion every practice. im wondering if it's wise to take the dapsone because of this, i dont want to pass out or swim like crap the rest of the year especially because our sectional championships are coming up soon (3 weeks]. The bumps on my skin arent that bad currently, but i think i'll probably have a relapse as soon as im off the prednisone. I have dealt with it for months with no medication, but the itch, i think, slowly degrades your sanity...haha.

any feedback?

thanks

p.s. after posting this i realized i spelled exercise wrong....I know im retarded

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

Celiac.com Sponsor (A8-M):


mtdawber Apprentice
mtdawber
Posted
Now i swim 6 days of the week, over 3 miles a day, and i work to the point of sheer exhaustion every practice. im wondering if it's wise to take the dapsone because of this, i dont want to pass out or swim like crap the rest of the year especially because our sectional championships are coming up soon (3 weeks]. The bumps on my skin arent that bad currently, but i think i'll probably have a relapse as soon as im off the prednisone.

Hi and welcome. I haven't found that I am more/less tired from taking dapsone and I was very concerned before I started it. Being a red head I fight my levels anyway but so far, so good. It's a personal decision for everyone - that's just what I've noticed. As with everything in life, everyone is different.

MGoers37 Rookie
MGoers37
Posted
  • Author
Hi and welcome. I haven't found that I am more/less tired from taking dapsone and I was very concerned before I started it. Being a red head I fight my levels anyway but so far, so good. It's a personal decision for everyone - that's just what I've noticed. As with everything in life, everyone is different.

Thanks for the input. As of the last post i have noticed a very very bad relapse ( within a week i had as many spots, if not more. as when i started taking the prednisone). Im going to my normal doctor this week sometime to get his input on the situation since he used to swim as well. The dermatologist i went to, although very bright, seemed to be padding the situation. first he told my mom over the phone that there are NO side effects whatsoever, then when i talked to him in person said that i wouldn't get any side effects but if i did they'd notice it in the blood screen that was performed every two weeks. from what i understand most people get some sort of difference in their blood screen after taking the dapsone, whether serious or just minor. the derm seemed to be bsing me to some extent, instead of giving me a strictly facts type of deal...

i'll probably just end up waiting till the end of sectionals, im sure i can last another 13 days

MGoers37 Rookie
MGoers37
Posted
  • Author

well going to then doctor's to find out if dapsone will be okay no longer matters because im finally spot free! That's right, after a month and a week of the gluten free diet the spots are basically gone [i get one or two every now and then]. Im so relieved the spots are gone, it was getting really bad.

does anyone else have success stories they'd like to add?

  • 2 weeks later...
Granny Garbonzo Apprentice
Granny Garbonzo
Posted

Sorry you've been through so much. My daughter was on swim team in Moscow Idaho in Middle School when we found out that the rash she had was from gluten. My mother nearly died and was down to 80 lbs from her usual hefty self, she was being fed intraveineously. When we realized that our health problems were related to gluten, we stopped it immediately...but it took quite a long time before her rash went away. It kept coming back because we were not fully aware of all the long list of things that contain gluten, and I was going to school and we had no money and few resources in that little town.

What I'm trying to say is that you may get the rash back now and then from some bit of gluten you get here or there, but I think drugs like prednisone and dapsone are extreme health hazards in my book. Have you ever read the list of health hazards associated with these drugs? We used natural immune system builders that can be learned on your own from books and online info or if you can afford it, you can see a natural doctor or a doctor of traditional chinese medicine.... Frankly, I think it is important for us with celiac disease to learn as much as we can about how we can build up our body through diet and exercise and things like vitamins and herbs. By taking this route, instead of depending on doctors, you can take control of your own health and know when seeing a doctor is useful and when it is not.....I am nearly 50 yrs old now, and my daughter is 28. We only see a doctor maybe every three years or so. We are both celiacs as are my daughter's two little girls. We work hard at learning all we can to care for our own health. If I would have listened entirely to doctors, I and my family would not enjoy the outstanding health we do today. Just this past year I was accepted for long-term life insurance by two well known companies....that's impressive for a 50 year old woman....they're banking on me living into my 80s and 90s. You can too if you work at it a little....sounds like you already exercise, that's more than most people...now think about studying and learning all about your immune system and your cardio system, etc. You will have kids of your own someday that may be celiacs too...the more you learn, the better life you will be able to have now and with your future family.

Best to you

Granny

lovegrov Collaborator
lovegrov
Posted

I took dapsone for more than 20 years for DH and mine disappeared immediately after going gluten-free. It usually takes months but honestly I never took another dapsone after going gluten-free.

richard

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

I take 1 pill (25 mg) a day for DH.

I also work out 4-5 times a week (everything from treadmill, weight lifting and soccer). It has not affected my "athletic life"...

BB

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.