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

Help!!! Could this be DH?

Mary Anne Simpson

Recommended Posts

Mary Anne Simpson Rookie
Mary Anne Simpson
Posted

Help! I have had an itchy rash that started on my lower legs about a year ago. I do not have the burning/stinging sensations that I see mentioned. Is that always a part of DH?? I get a bumbley rash that almost looks like eczema. If I were to itch it, a clear fluid comes out . The itch is literally unbearable. Along with that rash are separate pustules that are red. They have an almost pimple like quality, but they don't go away, they just last for weeks. They also itch intensely. The rash then moved to my elbows and forearms, it was also between my breasts for a bit and on my lower flanks. only the primary rash on my lower leg has the bumble blistery look. all the other areas are more like pimples, some single and others in groups. I went gluten free for 2 weeks and it seemed like the rash was actually starting to not itch. From what I read, I'm not sure that the itch usually subsides that quickly? It was still ugly, but the itch was subsiding. Then, last night my neighbor kept pushing her pirogi on me. They are polish dumplings, covered in a flour pastry. I woke up with a huge flare and as the day progressed I feel like I am losing my mind with the itch.

I went to a dermatologist about 6 times now. I mentioned DH, but the doc said the biopsy didn't show it. He did not do the biopsy in the manner recommended by all the DH forums. I live in the northern suburbs in Illinois. I am so afraid of going to a different dermatologist and getting the same song and dance. Should I see a dermatologist and get biopsied, or just go gluten-free. I just want to know what on earth is going on. I should also mention that although I don't have celiac symptoms, I do have looser stools than normal.I went on a boron supplement, and they are better, but it is still a bit of an issue. Im just wanting to know what is wrong, and dreading another summer with legs showing a battleground of discolored skin and ugly scars.

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted
On 2/20/2017 at 10:00 PM, Mary Anne Simpson said:

Help! I have had an itchy rash that started on my lower legs about a year ago. I do not have the burning/stinging sensations that I see mentioned. Is that always a part of DH?? I get a bumbley rash that almost looks like eczema. If I were to itch it, a clear fluid comes out . The itch is literally unbearable. Along with that rash are separate pustules that are red. They have an almost pimple like quality, but they don't go away, they just last for weeks. They also itch intensely. The rash then moved to my elbows and forearms, it was also between my breasts for a bit and on my lower flanks. only the primary rash on my lower leg has the bumble blistery look. all the other areas are more like pimples, some single and others in groups. I went gluten free for 2 weeks and it seemed like the rash was actually starting to not itch. From what I read, I'm not sure that the itch usually subsides that quickly? It was still ugly, but the itch was subsiding. Then, last night my neighbor kept pushing her pirogi on me. They are polish dumplings, covered in a flour pastry. I woke up with a huge flare and as the day progressed I feel like I am losing my mind with the itch.

I went to a dermatologist about 6 times now. I mentioned DH, but the doc said the biopsy didn't show it. He did not do the biopsy in the manner recommended by all the DH forums. I live in the northern suburbs in Illinois. I am so afraid of going to a different dermatologist and getting the same song and dance. Should I see a dermatologist and get biopsied, or just go gluten-free. I just want to know what on earth is going on. I should also mention that although I don't have celiac symptoms, I do have looser stools than normal.I went on a boron supplement, and they are better, but it is still a bit of an issue. Im just wanting to know what is wrong, and dreading another summer with legs showing a battleground of discolored skin and ugly scars.

Welcome to the forum Mary Ann! :)

You are in a great place to get good advice and counseling.  The University of Chicago celiac center is world renowned for their research and programs.  You could contact them and probably get the help you need for a diagnosis of DH.  DH is a condition that only people with celiac disease get.  So if you have DH you have celiac disease.  Also, people with DH can tend to not test well on the blood antibodies tests.  The IgA antibodies are in the skin instead of hanging around the gut like they are supposed to.

Your rash sounds like DH To me, but I am just going on what I've read about it.

Open Original Shared Link

Mary Anne Simpson Rookie
Mary Anne Simpson
Posted
  • Author

Thank you! I just requested an appointment. As much as I do not want my rash to be DH, I am at the point where i just want to know and go forward. (And stop itching!)

Cjg Newbie
Cjg
Posted

Mary Ann, according to my dermatologist, on the IgA test DH will produce a false reading 50% of the time.  Listen to your body, if you felt better without gluten, become educated and make healthy choices.

Jmg Mentor
Jmg
Posted
5 hours ago, Mary Anne Simpson said:

Thank you! I just requested an appointment. As much as I do not want my rash to be DH, I am at the point where i just want to know and go forward. (And stop itching!)

Good luck Mary Anne :)

Remember not to exclude gluten from your diet in advance of any testing. That could lead to a false negative and make the whole process much more difficult. 

squirmingitch Veteran
squirmingitch
Posted

Hi Mary Anne,

I'm going to repeat....

Do not give up eating gluten until all testing is completed!!!!!!

60% of those with dh test negative on the blood tests yet we do have the intestinal damage. It tends to be patchier in us though. We tend to have milder, fewer GI issues than celiacs who don't have dh. A dh biopsy, as you have read on here, is taken on clear skin adjacent to an active lesion.

Yes, dh can go away (stop itching) in 2 weeks of gluten free orrrrrrrrrrrrrrrrrrrrrrrrrrr it might take years. DH can come & go at any time, even if you're eating gluten -- it waxes & wanes; that is until the day it decides to stay & make every hour & day & month of your life miserable. Not everyone gets the stinging or burning or maybe I should say not everyone at every stage. 

A dx of dh IS a dx of celiac & no further testing is needed.

Mary Anne Simpson Rookie
Mary Anne Simpson
Posted
  • Author

Ok I went to a new dermatologist who was recommended by my gastro doc. He said she was familiar with dh. She told me that she thought that I had flea bites. I almost fell over. I have 2 dogs and a cat, but they are treated for fleas and they never scratch themselves. I asked her about a biopsy, and she said that since my prior biopsy (which was only one of the pustules) didn't show anything that was good enough for her. 

My rash is primarily on my lower legs. That's where the blustery part is. The blisters are not as often as the pimple like things that are either single or in groups of 3 or more. I have maybe 4 on my thighs, I had 3 on each flank and a few on my arm. My elbow/forearm is itchy, and so are the backs of my hands, but the dots are smaller and I can resist itching there a bit more. I did tell her it was amazing how the fleas would bite me in such a symmetrical pattern!

 

My gastro can't biopsy, but he wants me to do blood panel for celiac, and the genetic component, from Prometheus labs. Will this show if it is DH??!! Especially since I am having a very difficult time finding a dermatologist who isn't just doing cosmetic procedures.  

Do some foods affect you more than others? The night I ate my polish neighbors pirogis I itched like crazy. Last night I ate bread as I was going to see dermatologist, but then today itch is there but not all consuming. Although I itch more in the evening, I can usually fall asleep  it doesn't wake me. Is this normal?

so many questions...can't thank you all enough for your help!

 

 

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

Celiac.com Sponsor (A8-M):


Jmg Mentor
Jmg
Posted

I don't know how easy it is for you to access University of Chicago? If you can go there it may be better as they're specialists, but if that's difficult I would have another go at the current dermatologist stressing that:

On 2/21/2017 at 4:22 AM, GFinDC said:

He did not do the biopsy in the manner recommended by all the DH forums.

Quote

DH is diagnosed by a skin biopsy, which involves removing a tiny piece of skin near the rash and testing it for the IgA antibody.

Open Original Shared Link

Put the onus on the dermatologist to please explain how an improperly taken skin sample can be used to exclude celiac. The answer to this question will determine whether you need another doctor. 

Others have had DH mistaken for flea bites: 

 

Open Original Shared Link - 

Quote

As a rule, fleas bite people around the ankles or at least in the lower parts of the legs. Flea bites on humans can also be seen on the arms, after you have held your pet.

You may want to mention the location of your previous skin issues?

Put any and all reactions you think you have and other things which strengthen the case, ie stressing the symmetrical nature of the issue and ask point blank for celiac to be excluded definitively by biopsy. 

Be confident and assertive, its your health and you need answers. 

 

squirmingitch Veteran
squirmingitch
Posted
On February 24, 2017 at 0:40 AM, Jmg said:

I don't know how easy it is for you to access University of Chicago? If you can go there it may be better as they're specialists, but if that's difficult I would have another go at the current dermatologist stressing that:

Open Original Shared Link

Put the onus on the dermatologist to please explain how an improperly taken skin sample can be used to exclude celiac. The answer to this question will determine whether you need another doctor. 

Others have had DH mistaken for flea bites: 

 

Open Original Shared Link - 

You may want to mention the location of your previous skin issues?

Put any and all reactions you think you have and other things which strengthen the case, ie stressing the symmetrical nature of the issue and ask point blank for celiac to be excluded definitively by biopsy. 

Be confident and assertive, its your health and you need answers. 

 

Great, perfect reply jmg!

Mary Anne Simpson Rookie
Mary Anne Simpson
Posted
  • Author

I do have another question regarding dh. I mad an appointment in march with a very good dermatologist in Chicago, btw. The part of my skin that feels bubbly and bumbly is only on my legs and possibly the backis of my hands. My forearms and elbows itch but I am able to resist scratching. I can also resist scratching what I call the satellite "pimples" that are either in small groups or singles. The bubbly (but not really a blister but more of a submerged blister) is the portion I simply cannot resist itching, unless I'm in Benadryl. That is the part that is sometimes awful and then mysteriously is sometimes not awful. I never have burning or stinging, just mind numbing itching. I have also had about 10 years of looser than normal stools, but not even close to diarrhea. Recently this has gotten better. I am eating gluten because of previous posts. The rash is not necessarily worse when I do. Do these symptoms still fit in to possible DH? Should I be blood and gene tested as well, or should I cut to chase and do only skin? Does it have to be close to the bubbly rash that comes and goes?

Archived

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

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


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    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

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...