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 Celiac.com!
    eNewsletter
    Donate

Dh


hippo33

Recommended Posts

hippo33 Apprentice

can anyone tell me if dh goes away after time on dapsone,will i eventually be able to eat gluten

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



momxyz Contributor

can anyone tell me if dh goes away after time on dapsone,will i eventually be able to eat gluten

I had a rash that had all the hallmarks of DH... had it for over 10 months and no topical provided relief. I never sought formal diagnosis (long story) but went gluten free 8/10/09. Within a week or so I was already seeing a difference, in that the topicals that did nothing before, now provided relief.

When I had a couple of pasta meals on a weekend away from home, I experienced an exacerabation of the rash.

Now, 6+ months out on the gluten-free diet, I am almost completely healed, save for the leftover purple spots.... I never went on dapsone. But from what I have read it has some undesirable side effects in the long term.

Yes, your DH may be greatly helped while you are on dapsone, and I am guessing you are currently adhering to a gluten free diet.

So what will happen if you go back to gluten??? Maybe - and others of more experience will correct me here - you will be ok as long as you stay on the dapsone. Maybe.

But do you really want to stay on a drug with known side effects forever? If you don't stay on a gluten free diet, that's what it will take.

Once you stop taking the drug, if you are still eating gluten, I would bet you a hundred bucks your DH will return to haunt you.

Link to comment
Share on other sites
hippo33 Apprentice

I had a rash that had all the hallmarks of DH... had it for over 10 months and no topical provided relief. I never sought formal diagnosis (long story) but went gluten free 8/10/09. Within a week or so I was already seeing a difference, in that the topicals that did nothing before, now provided relief.

When I had a couple of pasta meals on a weekend away from home, I experienced an exacerabation of the rash.

Now, 6+ months out on the gluten-free diet, I am almost completely healed, save for the leftover purple spots.... I never went on dapsone. But from what I have read it has some undesirable side effects in the long term.

Yes, your DH may be greatly helped while you are on dapsone, and I am guessing you are currently adhering to a gluten free diet.

So what will happen if you go back to gluten??? Maybe - and others of more experience will correct me here - you will be ok as long as you stay on the dapsone. Maybe.

But do you really want to stay on a drug with known side effects forever? If you don't stay on a gluten free diet, that's what it will take.

Once you stop taking the drug, if you are still eating gluten, I would bet you a hundred bucks your DH will return to haunt you.

Link to comment
Share on other sites
hippo33 Apprentice

thanks for the info,my problem is that ive been on the diet for 6 months and i still get it prety bad,there are little things that i must be missing but its fustrating because i never know what i ate that did it,the reason i asked if it was long term was because im in the army and right now i cant go to the field because i cant eat the food they provide,i know i drink a lot of coke and coke zero but coke says it is gluten free so i dont know im lost i just want to live a normal life with out having the rash on my face i guess im just really sensitive to gluten,maybe if i take the dapsone for a bit it will help me a bit we will see,thanks

Link to comment
Share on other sites
ChiTownMary Newbie

thanks for the info,my problem is that ive been on the diet for 6 months and i still get it prety bad,there are little things that i must be missing but its fustrating because i never know what i ate that did it,the reason i asked if it was long term was because im in the army and right now i cant go to the field because i cant eat the food they provide,i know i drink a lot of coke and coke zero but coke says it is gluten free so i dont know im lost i just want to live a normal life with out having the rash on my face i guess im just really sensitive to gluten,maybe if i take the dapsone for a bit it will help me a bit we will see,thanks

Hippo, I certainly can hear your pain. You're in a difficult situation to deal with since you're fairly captive to the food that is provided you. It stands to reason that even though you feel you have been on a gluten-free diet for 6 months you are most likely continuing to consume hidden gluten in your food. I used to have intermittent breakouts of DH on one butt cheek in the same place and it usually correlated with having eaten something I didn't realize had wheat gluten in it. I pretty much could count on it when dining out if I wasn't diligent about asking questions and sticking to what I knew was gluten-free. Good rule:When in doubt, do without. I haven't had a out break for months now and it is because I cook 90% of my own food at home and when dining out, I'm super careful. I have never taken Dapsone due to various side effect risks I'm not willing to experience. People who have never experienced DH have no idea what hell it can be.

In all the reading I've done over the past year and a half, one thing sticks in my mind when it comes to gluten intolerance. "Your never just a little pregnant. You either are or you are not". That translates into if you're gluten intolerant, you are gluten intolerant all day, every day. You can't eat a little bit here and there and hope to see relief. It's just not going to happen. I would suggest that you research deeper into what foods you are eating and check for wheat gluten. There are great sites out there that list hidden gluten (www.livingwithout.com is one) that you should be on the lookout for. The more you can eliminate the better your chances of improvement are. Don't give up, there is hope. Ask for ingredient info (if you haven't already) on all the foods that you are provided so you can begin to find the culprits. You must be proactive or you will remain in the spot you're in.

My quality of life changed one month after going gluten-free/CF. My only regret is that it took 45 years to figure it out!

Went gluten-free Nov.'08

Went Dairy Free Dec.'08

Officially diagnosed Gluten/Casein Nov.'09

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,070
    • Most Online (within 30 mins)
      7,748

    TT24
    Newest Member
    TT24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
×
×
  • Create New...