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

Medication?


FreyaUSA

Recommended Posts

FreyaUSA Contributor

My teenage son has dh. Since going gluten-free 5-6 months ago, his skin has pretty much cleared up, almost completely. Unfortunately, since going gluten-free, whenever he accidentally gets glutened, his reactions have become increasingly more severe. Yesterday, he suddenly broke out in a sweat, starting getting a migraine, developed a full body rash of tiny red dots (from his ankles to his hairline) AND the usual patches of "typical" itchy dh spots have become much MUCH larger (he also gets all the GI fun too, lucky kid :( ) He was so miserable last night! Does anyone know of anything out there to help lessen the dh effects? We've not been to a dermatologist, but we will if it would be recommended (but I've been unimpressed with the knowledge of most doctors concerning celiac disease.) Any help would be most appreciated!


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



Celiac.com Sponsor (A8-M):



bratcat Apprentice

When I was diagnosed as celiac my dr told me about the rash.He did not know that I had had the rash for 8 months.I did not know what it was.He gave me a scrip for "lotrosone cream".It was wonderful.It helped heal and stop the itch.Maybe this can help your son.This has to be really hard for a child.You have my sympathy.Hope this helps. : ;)

Maggie1956 Rookie

Hi Freya,

I don't know of any creams to help your son's itch, but I'd like to let you know that I'm thinking and praying for him, and you.

I have a small patch on my ankle and it drives me almost mental when it is at it's worst.

Maggie

FreyaUSA Contributor

Thank you, Bratcat, for the cream suggestion. I'm going to give the doctor a call today and get a prescription. And, thank you Maggie and Bratcat for your kind thoughts! Yesterday he went to school, but he's home again today. He also gets very depressed from the gluten (when otherwise he's a really upbeat, together kid) and, though he might "feel" good enough to go to school, last night he had an emotional breakdown and I gave him an extra day home. :(

  • 2 weeks later...
AustinDH Newbie

I know everyone here suggests being totally gluten free, which I support and which I am doing. But I have to say that Dapsone was extremely effective in treating my DH and starts to work within 24 hours. I never had any side effects whatsoever, even though I know there can be severe side effects. The side effect that is so bad is that it could make your white or red blood cells (can't remember which) "explode" which results in anemia and who knows what else. But, they check your blood to make sure you don't suddenly become anemic - that would be the sign that you're having the side effect.

I would ask a doctor or dermatologist for Dapsone. It will help when he has "accidents" w/gluten. He can have his blood drawn once a month for a few months to make sure he's not having the side effects. Like I said, I never had any problems with it and was much happier using the Dapsone than being totally gluten free. I would be using the Dapsone if I were not trying to get pregnant.

Good luck!

  • 3 weeks later...
FreyaUSA Contributor

AustinDH, do you have to take the dapsone every day even when not having a reaction?

lovegrov Collaborator

How often you have to take dapsone and how much depends on the individual. I took mine only every third day or so even when I was eating gluten every day. The tiny red dots don't sound like DH, though, at least not the way I had it. You sure he's not also having an allergic reaction?

If your son took the dapsone only when he starts an outbreak, he'd still suffer some but not as long and not as much. The DH should cease to be a problem after he's been strictly gluten-free for a while.

richard


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



Celiac.com Sponsor (A8-M):



FreyaUSA Contributor

The little red dots aren't technically DH. It had been diagnosed as keratosis pilaris some years ago. However, since they flare up whenever he eats gluten, they are somehow gluten related (who knows, he may have a wheat allergy on top of celiac disease.) But, he does have the regular DH breakout reactions, too, on his hips, knees and "other areas." (I didn't press for more info, I could see the ones on his hips though, NASTY!) Injury to insult, I suppose. The little dots don't seem to bother him much (except visually.) The DH spots drive him crazy though.

I'd be willing to get the dapsone if it wasn't something he had to take all the time, but just during outbreaks. Thanks for the info, Richard! Any shortening of reaction time would be wonderful for him.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,340
    • Most Online (within 30 mins)
      7,748

    Linda Whelan
    Newest Member
    Linda Whelan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • somethinglikeolivia
      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
    • Ginger38
      I have posted a lot on here and find that the support , advice and information here is much more helpful than anything else.. ever. I am really tired of the back and forth advice in the medical community and I am beyond frustrated and over all of it currently. I will try to keep this as brief as possible. I have positive TTG IGA antibodies - and I have had these every time I have been tested. The first time they were positive I was told I did not have celiac and couldn't have celiac but I was gluten intolerant and to go gluten free. I did this for about 3-4 months, dedicated I might add, and I did feel better. However, my blood glucose went up drastically and since I was already pre-diabetic and insulin resistant already, I was then told to stop the gluten free diet and resume eating gluten as it would be better for my diabetes.I have been on a yo yo diet and roller coaster since between the gluten free and not gluten free. I decided to see a gastro doc and after him promising me I had celiac based on all my symptoms and positive antibodies but we needed that actual diagnosis in order to be treated correctly, and we just needed the EGD with biopsies to have that diagnosis, I reluctantly agreed to go fully on the gluten challenge for 8 weeks prior to having an EGD and colonoscopy, both with biopsies . The gluten challenge was miserable. At first I was horribly constipated, I gained 9 pounds during the challenge, had horrible swelling issues, terrible bloating, looked and felt pregnant, had rashes and itching, couldn't stay awake, had extreme brain fog, exhaustion, speech difficulties, palpitations, tachycardia , menstrual issues, had an insatiable hunger, mood swings, just all the things. All of this to get the tests and biopsies done and they looked "okay" .. so even though I was told to live like a celiac all of the sudden I am no longer at risk.. I am just gluten intolerant.  I also have uncontrolled diabetes that they feel is made worse by the gluten free diet, so again after all these tests, but having all the symptoms and still having positive antibodies I feel like I am stuck with the choice in regards to my health of addressing the diabetes or the celiac (still don't believe I am not actually Celiac).  So I have been having gluten off and on to try and manage my diabetes, even though most recently, because I have been so physically sick again (that can't be good for diabetes either right??)  with stomach pain, burning, diarrhea, stools that are yellow in color and contain mucus, nausea, some vomiting, sour stomach, I was told I need to just eat gluten free so my stomach will improve, and we will just put you on insulin - I don't want to go on insulin yet, and especially if I do not actually have to. I don't understand why I am backed in this corner of feeling like I have to choose to eat for my diabetes or my stomach, but not both, but I am over it.   So currently in regards to GI symptoms - I consistently have nausea, vomiting, diarrhea, abdominal pain, gas , bloating, reflux, sour stomach, yellow stools with mucus.  I am also exhausted and have been itching. I have been having increased swelling, pain, and horrible numbness and tingling, especially in my hands. I am also having an increase in relentless nightmares and night terrors. I have also been having chest pain and palpitations and tachycardia. I have even tried taking digestive enzymes to help break down gluten - (specifically the Gliadin X) and they just seem to make me feel worse. I have trouble with digestion of things like salads, beans, broccoli, etc. on a good day, and that is even worse when I have gluten on any kind of semi-regular basis.   I just can't keep doing this. Mentally, physically and emotionally I am just DONE. I already have a lot of stress in my life.. I am a single mom to a daughter who has her own health issues and is somewhat special needs. I need to be 100% to be what she needs from me, especially with all the running back and forth we have been doing to the doctors and hospitals. So I am no doctor... but I just don't think they are right about any of this. I truly feel I am celiac.. and either the damage just wasn't bad yet, or they just missed the area that has damage, or its all a precursor to full blown celiac (kind of like pre-diabetes/insulin resistance is for actual diabetes). I don't want to live miserable and feel bad all the time. I also don't want my diabetes to be so out of control I have major complications, and I don't feel like insulin is a great option if not truly needed. At this point, if I ever feel like I have a somewhat clear path of what I am dealing with,  I feel like I am looking at MONTHS to YEARS of trying to heal my body. Please help!
    • Ginger38
      No, I have not been checked for any other deficiencies or issues. No one will check these things since my EGD looked normal and there was no damage. I recently saw my gastro doc and it is just frustrating. I have diabetes, which is basically uncontrolled, and I keep being told, stop eating gluten free, because the gluten free diet is contributing to my diabetes worsening. Then I am told oh just eat gluten free and you can go on insulin, which I don't feel like is a good answer either. So I end up eating gluten because they tell me it's okay or that I should bc of my diabetes. I am so sick today - physically mentally emotionally - just tired of this roller coaster ride.  I am open  for any realistic advice... I feel like I get more support here than in real life 
×
×
  • Create New...