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

No Blood Screening Results Of Dh Test Results But Drugs Seems To Be Helping...

mamat78

By mamat78
in Dermatitis Herpetiformis

Recommended Posts

mamat78 Apprentice
mamat78
Posted

Hi there,

I am still anxiously waiting on the results of the blood screening I got 2 1/2 weeks ago now. I am really hoping they are back after the easter weekend. Anyways, I also realized that my doc took a DH test completely wrong so I will likely get a negative result back on that one. 

I was perscribed dapsone on Wednesday so I have taken 3 days worth (50 mg dose). Although I still have moments of itching (and then burning from itching), the need to sractch my legs off seems to have subsided. If Dapsone is working, can I assume that eventually, I will get a positive diagnosis for celiac? I am so tempted to just go off of gluten and self diagnose rather than wait for what seems like forever to get results back and then further testing. 

 

Yesterday was a big gluten day and by the end of it, I went to bed so bloated and uncomfortable feeling, I swore I would be going gluten free as of today. I keep reading though that I just need to hold on and wait for a diagnosis or at least the tests before I go for it. 

 

Also, people with DH, does cholorine aggrivate your skin? For years I have blamed chlorine for my outbreaks but what I found was that I could tolerate it a few times and then suddenly I would break out again (for a longggg period of time). I have always just blamed the hot tub for my skin but now I am thinking it has been coincidental although if I am ever broken out even just slightly, the hot water in the hot tub seems to aggrivate it quite a bit.

 

 

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I'm glad the Dapsone is giving you some relief. but sorry that your biopsy was done incorrectly.  Is there any chance you can print out information from the webon how to do it and go back and have it redone?  I ask this, because this is your best shot at diagnosis.  It is unfortunate that those with DH frequently do not test positive on either blood tests or intestinal biopsy because all their antibodies are concentrated in their skin tissue. :(

 

Incidentally, it's probably not the chlorine.  Heat always seem to drive any skin condition insane

mamat78 Apprentice
mamat78
Posted
  • Author

I'm glad the Dapsone is giving you some relief. but sorry that your biopsy was done incorrectly.  Is there any chance you can print out information from the webon how to do it and go back and have it redone?  I ask this, because this is your best shot at diagnosis.  It is unfortunate that those with DH frequently do not test positive on either blood tests or intestinal biopsy because all their antibodies are concentrated in their skin tissue. :(

 

Incidentally, it's probably not the chlorine.  Heat always seem to drive any skin condition insane

Yes, I think I will call on tuesday to reschedule an appointment for this week and ask her to redo the biopsy. By then, the blood screening should  be back as well. I am so close to just going gluten free to see if it makes a difference on my skin. So far today, I havent had any as I was feeling so blah yesterday. 

learning2cope Apprentice
learning2cope
Posted

I need to get a skin biopsy. I'm going to make an appointment with my dermatologist. I'll call on Monday for one. Hopefully I can get in this coming week. I am really anxious to get this ball rolling. I haven't been diagnosed with celiac yet but I'm starting the process. I have DH (or what *I* think is DH) but is diagnosed as palmoplantar pustular psoriasis. So we'll see how it goes with the biopsy. I think at the time of the biopsy I will ask for a prescription for dapsone just to try it out to see if it really does help. Good luck with this! Hopefully we can beat this DH problem and live happily ever after! ;)

mamat78 Apprentice
mamat78
Posted
  • Author

I need to get a skin biopsy. I'm going to make an appointment with my dermatologist. I'll call on Monday for one. Hopefully I can get in this coming week. I am really anxious to get this ball rolling. I haven't been diagnosed with celiac yet but I'm starting the process. I have DH (or what *I* think is DH) but is diagnosed as palmoplantar pustular psoriasis. So we'll see how it goes with the biopsy. I think at the time of the biopsy I will ask for a prescription for dapsone just to try it out to see if it really does help. Good luck with this! Hopefully we can beat this DH problem and live happily ever after! ;)

good luck! I am already very sure that the dapsone is working. I am getting lots of relief so far. I know its not a great drug but it has been good while I sort out the rest of my diagnosis. 

I asked earlier but if dapsone works, is that not enough evidence that it is responding to DH? 

pricklypear1971 Community Regular
pricklypear1971
Posted

I noticed swimming in chlorine pools made my rash hurt and burn...and the bathing suit rubbed in it, too.

squirmingitch Veteran
squirmingitch
Posted

I've never read that Dapsone screws up the skin biopsy for dh but I do wonder. Anyone here who has had a positive skin biopsy for dh while on Dapsone & still eating gluten?

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

Celiac.com Sponsor (A8-M):


sisterlynr Explorer
sisterlynr
Posted

Hi there,

I am still anxiously waiting on the results of the blood screening I got 2 1/2 weeks ago now. I am really hoping they are back after the easter weekend. Anyways, I also realized that my doc took a DH test completely wrong so I will likely get a negative result back on that one. 

I was perscribed dapsone on Wednesday so I have taken 3 days worth (50 mg dose). Although I still have moments of itching (and then burning from itching), the need to sractch my legs off seems to have subsided. If Dapsone is working, can I assume that eventually, I will get a positive diagnosis for celiac? I am so tempted to just go off of gluten and self diagnose rather than wait for what seems like forever to get results back and then further testing. 

 

Yesterday was a big gluten day and by the end of it, I went to bed so bloated and uncomfortable feeling, I swore I would be going gluten free as of today. I keep reading though that I just need to hold on and wait for a diagnosis or at least the tests before I go for it. 

 

Also, people with DH, does cholorine aggrivate your skin? For years I have blamed chlorine for my outbreaks but what I found was that I could tolerate it a few times and then suddenly I would break out again (for a longggg period of time). I have always just blamed the hot tub for my skin but now I am thinking it has been coincidental although if I am ever broken out even just slightly, the hot water in the hot tub seems to aggIdrivate it quite a bit.

 

I don't think the pool chlorine affects my skin.  I know heat does cause me to itch more, even if I'm not in the sun.  

 

If Dapsone helps your rash, it probably is DH.  My doctor asked me to start eating gluten-free the day I started Dapsone, in Oct. 2012.  I was doing so much better and decided I'd try to wean off of the Dapsone . . . what a mistake!  I still had lesions but they were healing.  I am now wishing I had not stopped the Dapsone. . . . renewed breakout and going through all the itch, sting and burn again.  Whew . . .  I will stay on the Dapsone as long as I can and of course NO gluten.  

 

I'd say with eating gluten-free and your good result with Dapsone you will have a dx of DH.  

mamat78 Apprentice
mamat78
Posted
  • Author

I don't think the pool chlorine affects my skin.  I know heat does cause me to itch more, even if I'm not in the sun.  

 

If Dapsone helps your rash, it probably is DH.  My doctor asked me to start eating gluten-free the day I started Dapsone, in Oct. 2012.  I was doing so much better and decided I'd try to wean off of the Dapsone . . . what a mistake!  I still had lesions but they were healing.  I am now wishing I had not stopped the Dapsone. . . . renewed breakout and going through all the itch, sting and burn again.  Whew . . .  I will stay on the Dapsone as long as I can and of course NO gluten.  

 

I'd say with eating gluten-free and your good result with Dapsone you will have a dx of DH.  

I have to say that my rash is sooo much better already. It is not gone but it will be a while as I have had it since december so even when it settles down there will be dark red spots that will need to fade. The itching though is minimal (usually once or twice a day I get a small area that will be itchy but no bleeding for 2 days now which is huge improvement). I am staying gluten free until I get results from doc and if I have to go back on for further testing, I will. 

sisterlynr Explorer
sisterlynr
Posted

I have to say that my rash is sooo much better already. It is not gone but it will be a while as I have had it since december so even when it settles down there will be dark red spots that will need to fade. The itching though is minimal (usually once or twice a day I get a small area that will be itchy but no bleeding for 2 days now which is huge improvement). I am staying gluten free until I get results from doc and if I have to go back on for further testing, I will. 

 

Good news!  

mamat78 Apprentice
mamat78
Posted
  • Author

FLared up again as soon as I ate bread...I did this incase I need a retest on tuesday when I go back to the dr. Within an hour, My entire body starts crawling but the breakouts are where I am already dealing with the rashes (both legs). I feel horrible and very little energy. REgardless of what the results are, I will be going gluten free as I feel like I alreay know my body is struggling with it. 

  • 3 weeks later...
sisterlynr Explorer
sisterlynr
Posted

I've never read that Dapsone screws up the skin biopsy for dh but I do wonder. Anyone here who has had a positive skin biopsy for dh while on Dapsone & still eating gluten?

 

I was gluten free for 4 months and taking Dapsone.  The Dermatologist told me DH would  not show up in the biopsies.  I talked with him just last week and they did not show DH.  He said that inflammation/infection was present and these biopsies were peri lesion with the light.  This Derm was tops!  He wanted to biopsy since I was there and to see if possibly there was something else causing the rash.  I need a new ANA test and then I will be scheduled for light therapy to help with the healing process.  

I would like to know if anyone has had a positive biopsy while on Dapsone and gluten-free.  

mamat78 Apprentice
mamat78
Posted
  • Author

So with Dapsone, it will not likely show a positive biopsy? I am actually only putting it on the worst areas and leaving it without anything on the other areas in fear of exactly that! I am not gluten free at this point. 

 

My appointment is still a week and a half a way...seems like forever! 

squirmingitch Veteran
squirmingitch
Posted

I don't know mamat --- she said she was gluten-free for 4 months --- that alone is enough to make the biopsy negative so we don't know about the effect Dapsone may or may not have on dh biopsies.

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    2. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Yes thyroid was tested.. negative Iron ...I'm. Not sure ... Would that fall under red blood count? If so I was ok Thank you for the detailed response..☺️
    4. Colleen H
      - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines? Did it work ?? Thank you !!
    5. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,878
    • Most Online (within 30 mins)
      7,748
    Peta Dunn
    Newest Member
    Peta Dunn
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
×
×
  • 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.