Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

No Blood Screening Results Of Dh Test Results But Drugs Seems To Be Helping...
0

14 posts in this topic

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.

 

 

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

1

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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! ;)

0

Share this post


Link to post
Share on other sites

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? 

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.  

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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!  

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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.  

0

Share this post


Link to post
Share on other sites

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! 

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,133
    • Total Posts
      919,529
  • Topics

  • Posts

    • I agree, it's very unlikely she doesn't have celiac disease.  Can you find a local celiac group to get a doctor recommendation from?  They might have the best idea of a local doctor who is familiar with celiac disease.  There is also a doctors sub-section of this forum which might help find one.  http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/
    • Hi I'm newly diagnosed with coeliacs only 5 days ago so I have had 4 days gluten free , I felt more energised pretty quick but today have gone back to that sluggish feeling lethargic, could this be a withdrawal effect also did anyone have swelling whilst on gluten ?
    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,168
    • Most Online
      1,763

    Newest Member
    Natalie1980!
    Joined