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

Does Dermatitis Herpetiformis = Celiac?

ItchyMeredith

Recommended Posts

ItchyMeredith Contributor
ItchyMeredith
Posted

I just got a Dermatitis Herpetiformis diagnosis. Does that mean I have celiac....or I MAY have celiac? I can handle the rash. It itches but it is not that big of a deal. Cutting out gluten wil be a bigger deal but I don't want to cause internal damage by eating gluten.

Any ideas?

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

Celiac.com Sponsor (A8-M):


jerseyangel Proficient
jerseyangel
Posted
I just got a Dermatitis Herpetiformis diagnosis. Does that mean I have celiac....or I MAY have celiac? I can handle the rash. It itches but it is not that big of a deal. Cutting out gluten wil be a bigger deal but I don't want to cause internal damage by eating gluten.

Any ideas?

Hi Meredith and welcome--looks like you've come to the right place! :D

Yes, a DH diagnosis means you have Celiac. You need to follow a gluten-free diet for life.

It's not really that hard once you get the hang of it--feel free to ask any questions you have and be sure to read through the forums for food ideas, how to de-gluten your kitchen, eat out, deal with others on the subject, etc.

I don't have DH myself, but I'm sure that when others who do see this, they'll weigh in on the particulars.

tom Contributor
tom
Posted

Yes Meredith, it is daunting at first.

But it doesn't take that long for it to become second nature, like not eating dirt or an old piece of cheese found in a forgotten mousetrap.

And it won't take a LOT of reading here to see the symptoms u can prevent. Besides the general misery of the usual GI issues & brain fog & head and body aches and pains, there are very serious potential complications throughout the body.

Around 6 yrs after being unable to work, I was sure that continued decline would, in months, necessitate institutionalized care for a number of reasons.

Eating gluten-free will get easier week by week.

Read some of the personal accounts here further motivation. (I dare ya lol)

CarlaB Enthusiast
CarlaB
Posted

If you have DH, you are a confirmed celiac. You have an autoimmune response from eating gluten.

Eating gluten-free is very challenging in the beginning ... almost seems impossible. After a while, it's second nature. I've literally replaced everything with a gluten-free version.

Keep reading, you will learn a lot.

SunnyDyRain Enthusiast
SunnyDyRain
Posted

After only being Gluten free for 3 monthes, the only thing I don't like about eating Gluten Free is my lack of options when eating out. I hate looking at the menu and trying to think what is safe. Other than that.. gluten free is a breeze. Now the other food intolerances that I have tacked on... that is a different story.

Welcome and good luck! It's a learning curve!

Oh! Be sure to check all your personal products (shampoo, condtioner, makup, toothpaste) for gluten! That's a newbie mistake!

ItchyMeredith Contributor
ItchyMeredith
Posted
  • Author

Thank you all for your feedback.

I live only 2 blocks away from a Whole Foods store and was delighted yesterday to find all of my options. I am a strict vegetarian and have been since 1991 so I am accustomed to reading labels. I feel optimistic that I CAN DO THIS. It is going to take a while to get it down though. I was just reading that my shampoo- WEN by Chaz Dean (which I love) has wheat protein in it! My antiperspirant has wheat also! WTH?

Anyway, thank you for your help. I am going to explore the site and see what products are recommended.

Meredith

jerseyangel Proficient
jerseyangel
Posted

Meredith,

Two things, well really three, that I get at Whole Foods and like very much are crystal deodorant, and ShiKai Everyday Shampoo and Everyday Conditioner.

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

Celiac.com Sponsor (A8-M):


  • 4 months later...
JoyfulM Rookie
JoyfulM
Posted

One cool thing about Whole Foods:

On their website you can choose which Whole Foods is closest to you, then select dietary restrictions (gluten for us) and it will give you a PDF file of all the gluten free products at that store. I was just diagnosed last week, and I was so excited when I found that out! :)

lovegrov Collaborator
lovegrov
Posted

I know others have already said it, but, yes, you do have celiac. I had DH for more than 20 years without realizing this and then ended up in the hospital for 11 days and off work for 10 weeks. You don't want to end up this way. My dad also had DH and when we got all first-degree relatives tested (please do this with your family) my dad was positive on all at age 70.

richard

wowzer Community Regular
wowzer
Posted

All I know is that I don't want to itch like that again. I can think of at least 6 bouts of the most horrible itching. I even landed in the hospital one of the times. I was covered from head to foot with a rash. They said it was an allergic drug reaction, but they didn't know to what. I have had many weird reactions to medication and wonder could it have to do with malabsorption? I have a little sister that was diagnosed at a year old. I can remember my father having surgery then getting a blistery rash. He was always in the bathroom. He was never diagnosed. I also wonder about my Mom. She has had some blistery itcy outbreaks. She won't get tested. We got it from somewhere in our family. To me a gluten free diet is a small price to pay to avoid symptoms.

Franceen Explorer
Franceen
Posted

I second all that's been said so far! (Yes, you should look at your creams, lotions, etc - but I don't seem to have a problem with them - but after checking I discovered that most of what I used doesn't have gluten anyway - I was LUCKY!).

Going gluten-free will be a pain at first - especially if you have to eat out a lot - or if you travel a lot. I have a pretty high level job in the gov and end up at luncheons, dinners, buffets, conferences etc where I don't get to choose the menu and that is very frustrating. I always carry some food with me! I've been called "the bag lady" because no matter where I go I have my purse and some sort of FOOD BAG!!

Sometimes it's embarrassing, but I live and so do all of "them" (those that poo-poo my condition).

Don't get dismayed by the "but just a little won't hurt you????" "Or come ON, my mother made this just for this party/lunch/dinner/etc".......

I have a copy of the annual "Triumph Dining Guide to Gluten Free Restaurants" (also in my bag) - and I make people read through it to decide where to eat (when there is a choice).

After a while it becomes routine and just "that's the way life is".....

But always remember: It is a disease that has a NON-MEDICAL treatment!! No radiation, no Chemo, no knife, no shots, no pills, no inhalers, no drugs, no prescriptions, no Novocaine!, no drill, no insulin! IT'S JUST FOOD!!!

Keep up the spirits and when the diet starts making a big difference in how you feel and look, it will get a LOT easier!

lovegrov Collaborator
lovegrov
Posted

Easy answer. Yes.

richard

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...