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

If You've Had Dh While Gluten-Free...

lizk

By lizk
in Dermatitis Herpetiformis

Recommended Posts

pricklypear1971 Community Regular
pricklypear1971
Posted

I'm surprised they use iodized salt on their hams. Seriously.

One thing to consider is generally, in the US, we get a fairly healthy dose of iodine from eating "normal" foods - potatoes, dairy, "regular salted food" - so if you eat those things at all (even grains and veggies) you still get iodine. Going on a low iodine diet like thyca only reduces it (depending on how strict you are). I guess my point is iodine is everywhere in the food chain - and it may console you to know you're still getting a bit (if you're concerned about withdrawal and health issues) or freak you out if you are trying to eliminate it :).

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

Celiac.com Sponsor (A8-M):


Charli61 Apprentice
Charli61
Posted

I would like to apologize, I made a mistake in my last post & stated Sees candies & chocolates was who I contacted about the iodized salt. I have edited the post. I meant to type Nuts.com not Sees. It is Nuts.com whom I requested change their iodized salt to non iodized. I just wanted to clear that up. Sorry for typing the wrong company in.ohmy.gif

So sorry Charli about the Boursin cheese --- I love that stuff too. When I first joined here someone told me the "hard" cheeses may be tolerated far better & have less iodine content. Unfortunately, according to my Googling, the hard cheeses consist mostly of the "stinky" cheeses. You know, the moldy ones. And I've never been able to tolerate those.

:) Yeah, they can keep the hard moldy type of cheeses as far as I am concerned too. As to the Boursin cheese, I'll miss it, but that's life with D.H. eh?

Charli61 Apprentice
Charli61
Posted

I have a question.....Probably a dumb one, but here goes.......Does anyone else out there find that when they have a D.H. flare-up their psoriasis also kicks up?? I am itchy with the D.H. and also massively bothered with the psoriasis at the same time.... So I wondered if it's just me, or if other people find the same issue?

Not that I think there is much help for it, I guess I just think that maybe misery loves company! ;)

squirmingitch Veteran
squirmingitch
Posted

Thank goodness psoriasis is not one of the things I have (crossing fingers that I never get it!) so I can't give you any direction there. But I'm sure there are others out there who can speak from experience & tell you what you need to know.

And there are NO dumb questions on here.

I would like to chime in with Prickly about the iodine. I did a lot of research on iodine content in all foods & it's just my opinion but I would venture to say that at least in the U.S. we get the minimum recommended amt. (150 mcg. per day) EVEN when we go on the low iodine diet. And people who are eating "normal" are likely getting an OD of iodine. I wouldn't be a bit surprised to see the powers that be come out one day with a study/statement that most Americans are now getting OVER the maximum daily limit.

For heaven's sake --- iodine is even used in regular (gluten) bread as a sort of binding agent. Go figure.

Charli61 Apprentice
Charli61
Posted

Thank goodness psoriasis is not one of the things I have (crossing fingers that I never get it!) so I can't give you any direction there. But I'm sure there are others out there who can speak from experience & tell you what you need to know.

And there are NO dumb questions on here.

I would like to chime in with Prickly about the iodine. I did a lot of research on iodine content in all foods & it's just my opinion but I would venture to say that at least in the U.S. we get the minimum recommended amt. (150 mcg. per day) EVEN when we go on the low iodine diet. And people who are eating "normal" are likely getting an OD of iodine. I wouldn't be a bit surprised to see the powers that be come out one day with a study/statement that most Americans are now getting OVER the maximum daily limit.

For heaven's sake --- iodine is even used in regular (gluten) bread as a sort of binding agent. Go figure.

:huh: Suitably chastised (My Mum always said the only dumb question is the one you didn't ask) ;) Glad to hear that you don't suffer with psoriasis - it's just kind of 'one more thing' you don't need! I don't 'need' it either, but that's life eh? I thought it was perhaps quite widely affecting those of us with D.H.? But, obviously there is a lot about the celiac D.H. affliction that I am finding out. Like the iodine thing!! (that's getting old REAL fast!!)

squirmingitch Veteran
squirmingitch
Posted

:huh: Suitably chastised (My Mum always said the only dumb question is the one you didn't ask) ;) Glad to hear that you don't suffer with psoriasis - it's just kind of 'one more thing' you don't need! I don't 'need' it either, but that's life eh? I thought it was perhaps quite widely affecting those of us with D.H.? But, obviously there is a lot about the celiac D.H. affliction that I am finding out. Like the iodine thing!! (that's getting old REAL fast!!)

I hear you about the iodine thing. Geez, we have so many rules to learn about gluten & it seems there are just about as many rules about iodine!

I understand psoriasis & eczema both are quite common with celiacs & furthermore that lots of people who aren't celiacs (or at least don't know they are) but have eczema or psoriasis find that it either abates completely or improves greatly by going gluten free. Makes me wonder if one day science will find those conditions are a precursor or early indicator of celiac disease.

Di2011 Enthusiast
Di2011
Posted

:huh: Suitably chastised (My Mum always said the only dumb question is the one you didn't ask) ;) Glad to hear that you don't suffer with psoriasis - it's just kind of 'one more thing' you don't need! I don't 'need' it either, but that's life eh? I thought it was perhaps quite widely affecting those of us with D.H.? But, obviously there is a lot about the celiac D.H. affliction that I am finding out. Like the iodine thing!! (that's getting old REAL fast!!)

Charli61 - you might want to repost as a new topic under the DH topic. It is an interesting question that you asked but many might not see it under this topic.

Repost as a new one with a psoriasis/DH in the title and see who in the community responds.

di

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Good idea Diane.

Charli61 Apprentice
Charli61
Posted

Thanks Diane, I agree it sounds like an idea, so I did do that. We'll see if there is a response or not! ;) this is the first forum I've ever written in on, but with all the support I see the attraction of forums :D

squirmingitch Veteran
squirmingitch
Posted

Some forums are better than others. This is an excellent forum. Not too many are. You lucked out finding this one. For that matter I did too!biggrin.gif

dilettantesteph Collaborator
dilettantesteph
Posted

Here is an article about celiac disease and skin conditions: Open Original Shared Link

Charli61 Apprentice
Charli61
Posted

Here is an article about celiac disease and skin conditions: Open Original Shared Link

Wow! Thanks, this is a terrific site! As I sit here itching horrendously (dinner out tonight) I think I ate something that didn't agree with my system! ;) But this site is a real help in answering many of my queries! Thanks again Dilettantesteph!

Di2011 Enthusiast
Di2011
Posted

I am going to repost this web link and the general issue of skin conditions in 'coping with' to see what response happens there. Many gluten-free'ers would frequent the DH section of this forum... keep a look out.

Lady-Fresh Newbie
Lady-Fresh
Posted

Before I cut out gluten, a doctor told me I had contact dermatitis, which wasn't too far off the mark knowing what I know now. I would get flare ups all the time, and my life was one long adventure of itchy misery. For a long time I had my baby sister convinced that I was allergic to her.

The skin reaction to gluten is a delayed reaction type. That means symptoms flare up hours, even days after the offending food, and the circulating allergens can persist. You can keep a list if you like, but likely a long list of innocent foods will start looking like the culprit when all that happened is that you ate them within the same itch producing window. I have found that common anti-histamines taken daily will cool the itch. I usually take Zyrtec daily when I relapse, and add Benadryl or Cortisol cream as needed.

For years I was down to about one Zyrtec maybe every other week but the past few months I've experienced a flare up and I've needed it daily. I was sure my body had re-booted because to my knowledge I was still eating gluten free but I only just realized that the yummy honey mustard in the cafeteria was the culprit. It's been 5 days, and I'm down to a zyrtec every other day. From past experience I know it takes about 2 weeks to a month to get my body back to normal.

Things will get better for you too. Read labels very carefully, beware of "natural seasoning" "malt" "other spices", and I've found that I feel like magic and sunshine when the food coloring is gone. When in doubt, don't eat/drink it. And it might feel annoying, but ask people exactly what they put into any dish they serve you. You'd be surprised the flour ridden shortcuts people will use to seem like culinary whizzes when trying to impress a crowd. And lastly, it's not rude to refuse to eat something you don't trust. It's your health, you have a right to not feel crappy just because they feel generous.

Itchiness sucks, I literally feel ya.

I am not yet diagnosed and have an appointment with a GI next month. I cut out gluten on my own because of some symptoms I was having and nearly all of my symptoms disappeared with the exception of soft/loose stools which is why I decided to see the GI to be sure it isn't something else. I know at this point since I am gluten-free any blood tests will be worthless without eating gluten, so basically I want to be sure it is nothing else, not necessarily looking for a Celiac dx at this point. I will most likely remain gluten-free because it makes me feel better. No more bloating, D, or headaches (those seemed to be my worst and most consistent symptoms).

I did have some itchiness while I was still eating gluten and at the time had never heard of DH so I never really noticed if the itchy bumps I had then were related to gluten (although I do remember one specific time when I had really itchy ankles and had digestive symptoms that same week). However, since I have gone gluten-free, I have had many times where I have some itchy bumps and I still really don't know if it is DH or not. Mine doesn't sound "typical" although I know it can take many forms - but mine is usually just a couple of bumps here and there but very itchy. Sometimes symmetrical but not always.

For those of you who have had DH while gluten-free - I guess due to CC or iodine or whatever the reason - do you find that the itchiness goes away sooner than when you had DH before you were gluten-free? I have only really paid attention to these itchy bumps since going gluten-free - I am keeping a food journal - so I don't really know how long it lasted before, but I see some people say they lasted weeks or even longer. I ate shrimp on Friday night and last night I woke up in the night with REALLY itchy bumps on both ankles. It was so itchy I couldn't sleep and nothing would help, I tried some tea tree oil and also some hydrocortisone cream. Finally I took some Benadryl and I don't know if that stopped the itching or just knocked me out, but I finally got to sleep. This morning, the tiny bumps are still there but are not nearly as itchy. I also occasionally get itchy bumps on my legs, arms, or torso and they seem to act the same way - really itchy for a while but usually stop itching within a day or so. Itching seems to be worse at night or right after a shower.

Has anyone else experienced anything like this?

lizk Rookie
lizk
Posted
  • Author

You'd be surprised the flour ridden shortcuts people will use to seem like culinary whizzes when trying to impress a crowd. And lastly, it's not rude to refuse to eat something you don't trust. It's your health, you have a right to not feel crappy just because they feel generous.

Itchiness sucks, I literally feel ya.

Thanks for the reply! I hope you continue to feel better. You are so right about the flour shortcuts...I recently read somewhere (on here I think) that some restaurants will use it in scrambled eggs! I would never have thought to ask if the eggs have flour in them!

Di2011 Enthusiast
Di2011
Posted

Buy, cook and eat what you know to be fresh and free is the only way to go. Because of my DH this is my doctrine. It doesn't have to be the same for everyone but has made a major improvement to my DH.

dilettantesteph Collaborator
dilettantesteph
Posted

Buy, cook and eat what you know to be fresh and free is the only way to go. Because of my DH this is my doctrine. It doesn't have to be the same for everyone but has made a major improvement to my DH.

I don't have DH, but that's what I have to do to be symptom free too.

  • 3 weeks later...
YvetteF Newbie
YvetteF
Posted

I so appreciate all the input and personal experiences here. I just realized that I have DH and not psoriasis (misdiagnosed 4 years ago). I found out I have celiacs disease and while having been mostly gluten-free for the past couple years...cheating sometimes, but mostly keeping my DH under control...

For the past 3 weeks of being officially gluten-free, my DH is REALLY BAD! (of course there's some contamination, I live in spain, and frankly it's not that easy--I didn't even THINK about corn being contaminated, but of course, we live in field crop country and corn is grown right alongside wheat or barley sometimes...although these grains are for animal feed)

In another forum, there's a comment on the stress also affecting DH. I have had this experience too. As well as female hormones (pregnancy, breastfeeding, etc.).

I've been feeling strongly that my body is trying desperately to get rid of the toxins.

Thank you and glad to be here.

Yvette

pricklypear1971 Community Regular
pricklypear1971
Posted

I think I have a spot on my finger that showed up after I had the flu.

It's either some other weird rash that won't go away and is round/bubbly but not contagious but spreads, or DH ...sound familiar?

I also wonder if the herpes whitlow on my hand I was dx'ed with as a child was actually DH. Geez.

At least it's not on my pits this time. And it's not nearly as uncomfortable as the pit rash Pre gluten-free.

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. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    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
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...