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

Aaaaannnnnd Another "rash Pics"

StephieRN

By StephieRN
in Dermatitis Herpetiformis

Recommended Posts

StephieRN Rookie
StephieRN
Posted

Good morning all!

I finally figured out how to get pics here from my phone. Soooo here are my pics if anyone would like to share an opinion.

Ok a little FYI info...

1. Rash didn't start until about 5 years ago, and this is about the 10th time I've had it.

2. These pics are 10 days into the rash, so I know they look very mild but I forgot to take pics at the beginning

3. This particular episode was set off by Ramen noodles, AKA the devils dinner

4. I was hesitant to share the one of my chest- this isn't how they really look- before the picture I was showing my daughter how the little blisters are fluid filled, so popping them- turning them into this blotchy mess for the camera.

5. My head and ears and butt itch the most, yet no rash. Weird.

http://s1355.photobucket.com/albums/q702/nursesrock76/?action=view&current=photo_zps58d15c93.webp&evt=user_media_share

http://s1355.photobucket.com/albums/q702/nursesrock76/?action=view&current=photo_zpsf8e9f738.png&evt=user_media_share

http://s1355.photobucket.com/albums/q702/nursesrock76/?action=view&current=photo_zps5e00d7a0.png&evt=user_media_share

http://s1355.photobucket.com/albums/q702/nursesrock76/?action=view&current=photo_zps143da8a2.webp&evt=user_media_share

I hope those links work! I have no idea what I'm doing LOL

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kmag Rookie
kmag
Posted

Looks like DH to me. My rash used to look just like this before being gluten free for some time. My guess is that between the wheat noodles and the massive salt hit from the ramen flavouring is what caused this particular outbreak.

I'm also very itchy even where there's no rash. Drives me crazy to say the least.

Link to comment
Share on other sites
StephieRN Rookie
StephieRN
  • Author
Posted

Kmag are your outbreaks pretty much a rare thing now? I'm hoping that since mine are mild they won't come back almost ever after going gluten-free. *crossing fingers*

Link to comment
Share on other sites
squirmingitch Veteran
squirmingitch
Posted

Yup, between the blisters, the photos & the itching; I say it looks like dh.

I hope after gluten-free they almost never or never come back for you but just remember they can. And dh is very, very sensitive to the tiniest amount of gluten. So don't take any chances. Play it really safe otherwise it may go gangbusters on you.

Link to comment
Share on other sites
kmag Rookie
kmag
Posted

If I keep my diet simple and lower iodine then my skin is better. I used to have that red rash you have, but that's gone now and what's left is more like purigo nodularis, but not exactly. The bumps I have will flare and blister if I get cc'd or have too much iodine. I am still terribly itchy in general, but I do believe that I'm slowly healing as it's so much better than before. For the record, I've been gluten-free for 20 months now.

I really hope that once you are gluten-free it'll never come back. I can't see any reason to think otherwise. Good luck!

Link to comment
Share on other sites
sisterlynr Explorer
sisterlynr
Posted

Good morning all!

I finally figured out how to get pics here from my phone. Soooo here are my pics if anyone would like to share an opinion.

Ok a little FYI info...

1. Rash didn't start until about 5 years ago, and this is about the 10th time I've had it.

2. These pics are 10 days into the rash, so I know they look very mild but I forgot to take pics at the beginning

3. This particular episode was set off by Ramen noodles, AKA the devils dinner

4. I was hesitant to share the one of my chest- this isn't how they really look- before the picture I was showing my daughter how the little blisters are fluid filled, so popping them- turning them into this blotchy mess for the camera.

5. My head and ears and butt itch the most, yet no rash. Weird.

http://s1355.photobu...ser_media_share

http://s1355.photobu...ser_media_share

http://s1355.photobu...ser_media_share

http://s1355.photobu...ser_media_share

I hope those links work! I have no idea what I'm doing LOL

Your pics link came through. The front view of you is what I looked like all over! My scalp, back, front and butt. I have some lesions around my knees and on my arms too. I am a self diagnosed DH person. I had the scalp and feet breakouts since at least 1999, of and on.

I have been gluten free and on Dapsone for 4 weeks and the improvement is drastic! I still have itchiness but if I shower or take a bath and lotion up, it will subside somewhat. I am also taking Benadryl most everyday. I am using Argan Oil and it is helping with the roughness of my skin. I have even melted the ointment so I can apply it more easily to my scalp.

I broke out all over my body this past March and just knew I could not live without a diagnosis. I have good results with my BS being much better and I have lost 20 lbs in the 4 weeks. My blood test was negative and I am still scheduled to have an endoscopy but even if the results are negative. . . . I will always eat gluten free! When I am going out to eat I check online to see the allergen menu of the restaurant and that has helped me immensely. I don't want my social activities to suffer due to this disease. You can eat out and be safe. I never have like Ramen noodles so I'm safe from that. . . Good luck!

Link to comment
Share on other sites
  • 6 months later...
CommonTater Contributor
CommonTater
Posted

I can't figure out why I'm so broke out now. My head gets really bad with some on my face sometimes, my back, stomach and butt.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 2 weeks later...
sisterlynr Explorer
sisterlynr
Posted

I can't figure out why I'm so broke out now. My head gets really bad with some on my face sometimes, my back, stomach and butt.

 

 

Sometimes my scalp is horrible, like right now.  I found out a few weeks ago I was eating some veggies that are high in iodine.  Red food coloring has iodine . . . may have to sit down and write/print out a list so I won't forget!  

Link to comment
Share on other sites
squirmingitch Veteran
squirmingitch
Posted

Red food coloring #3 is the one with iodine. Red #40 is fine. That's in the US --- other countries may be different.

Link to comment
Share on other sites
crazyfly Newbie
crazyfly
Posted

Hi, I can't really say by looking but I can describe how mine feels. The itch is insane. Given a choice between having sex while eating chocolate cake on a yacht in the Caribbean, and scratching, I'd take scratching every time. If you've ever had a cold sore on a lip, that's kind of how the rash feels and acts.

 

 What I've learned over the years is; Don't scratch. Do not pop them. Don't put anything on them except ice, Betamethasone if you can get the prescription (use a tiny amount, don't coat the area), and rubbing alcohol or something like Everclear to help with the itching. Change your towel and washcloth after each shower. Use the coolest water you can take and NO baths until the rash is completely gone. Do not use neosporin or tea tree oil or anything else that might irritate the skin.

 

 Others here may have had different experiences, these are mine. I no longer use deodorant. I use only Dove soap for sensitive skin and I avoid putting ANYTHING on my skin.

 

 
Link to comment
Share on other sites
  • 2 weeks later...
sisterlynr Explorer
sisterlynr
Posted

 

Hi, I can't really say by looking but I can describe how mine feels. The itch is insane. Given a choice between having sex while eating chocolate cake on a yacht in the Caribbean, and scratching, I'd take scratching every time. If you've ever had a cold sore on a lip, that's kind of how the rash feels and acts.

 

 What I've learned over the years is; Don't scratch. Do not pop them. Don't put anything on them except ice, Betamethasone if you can get the prescription (use a tiny amount, don't coat the area), and rubbing alcohol or something like Everclear to help with the itching. Change your towel and washcloth after each shower. Use the coolest water you can take and NO baths until the rash is completely gone. Do not use neosporin or tea tree oil or anything else that might irritate the skin.

 

 Others here may have had different experiences, these are mine. I no longer use deodorant. I use only Dove soap for sensitive skin and I avoid putting ANYTHING on my skin.

 

 

 

 

 

I'm following your rubbing alcohol treatment. . . I stopped taking Dapsone, I think I had a Dapsone rash in addition to the DH.   :mellow:   I have question.   About the rash . . . is every lesion a blister with fluid?  I'm still trying to track down all I can to present to my doctors.  I have a DH diagnosis but not every lesion had fluid.  I scratched and the skin opened and bled and then it was a hot mess.   I definitely have had blisters with amber fluid and then some that were very small blisters, felt the liquid but they didn't bleed.   Thanks for any help or advice.

 

~  Lyn

Link to comment
Share on other sites
  • 5 years later...
Breezy1 Explorer
Breezy1
Posted

I know this post is old but I’m so glad I found it!

I haven’t been able to figure out how to post pictures on here, but my rash looks exactly like OPs pictures. It’s only on my back and shoulders though. But it gets extremely itchy, and when the blisters that I’ve scratched heal they seem to leave purplish marks behind. I’ve had this for years, although it isn’t always itchy,It seems to flare up for a period of time and then it’ll eventually calm down, only to flare up again. Does this sound like DH? I guess this is another thing to add to my list of symptoms to bring up to my doctor tomorrow!

Link to comment
Share on other sites
squirmingitch Veteran
squirmingitch
Posted

Only a dh biopsy will tell for sure.

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,090
    • Most Online (within 30 mins)
      7,748
    Nicole K
    Newest Member
    Nicole K
    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

    • Denise I
      Celiac Dietician

      By Denise I · Posted

      I am looking to find a Celiac Dietician who is affiliated with the Celiac Disease Foundation who I can set up an appointment with.  Can you possibly give some guidance on this?  Thank you!
    • Posterboy
      14 year old with Celiac & EOE still suffering...

      By Posterboy · Posted

      Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy quoting from the article.... "The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32" Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption. You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time. This may take two or three months to achieve this.......maybe even longer depending on how low he/you are. The Yellow color is from excess Riboflavin bypassing the Kidneys....... Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex...... You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening. When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement. The body won't absorb more than it needs! This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned. Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex. You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium! Here is nice blog post that can help you Thiamine and it's many benefits. I hope this is helpful but it is not medical advice God speed on your son's continued journey I used to be him. There is hope! 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,  
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
×
×
  • Create New...