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. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    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

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • 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.