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

Could It Be Dh?


bookmama

Recommended Posts

bookmama Newbie

Hello,

Another "do I have DH rash" question. I know it is hard to figure out symptoms over the internet, without seeing the rash. But here is my story:

I am on armour thyroid for hypothyroid, and hydrocortisone for low adrenals. I take vitamins as I can remember.

About six weeks ago I started giving myself b!2 shots. I do this because it is cheaper, more convenient, and doesn't hurt the least bit. Previously I had them done at the doctors office. Those didn't contain preservatives. The home supply does contain preservatives.

At about this same time I accidentally took 2x the amount of iodine I normally take for my thyroid condition. (usually forget to take this, then I took it twice in one day - a hypo moment)

The next day I had a rash on my inner arm that itched. I thought it went away. A week later I started the shots at home. About that time I noticed a rash on my outer forearm. Itchy. It has since spread to the inner forearm, upper arm, other arm, thighs, shins, stomach, and sacral area. The spots are not big blisters like chicken pox. They are small, and occaisionaly when I scratch it feels as it pops. If I scratch hard it seems to relieve the itch for a short while.

The reason I suspect a celiac connection is the suddenness of the rash (I read that on a DH info page) and I have some (my family tells me) gas and bloating, particularly when I have cereal with milk (I no longer eat that)

I also wonder about the iodine triggering this. I have been anemic for a long time. All this together makes me wonder...

Does the rash have to be a blistery rash, or can it be a combination of bumps and blisters? Also, I read that the person can tell when the spots are coming up to a day before, because an area is itchy, then the spots or blisters will appear up to a day later. I noticed that I thought I was causing the bumps because I would scratch, then they would appear. The same thing...

So any thoughts about this, I would be grateful.

Thank you for listenting (reading)

Julie


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



Celiac.com Sponsor (A8-M):



Alona Newbie

From what I've read you don't always have to get blisters and sometimes they are so small that you don't notice them before you scratch them. I get itchy blisters in some places and I get itchy raised spots in others, that don't produce any liquid unless I press on them hard. So I think you totally could have it. I'm going to the derm on Monday to see if I have it.

flourgirl Apprentice

Iodine and ibuprofen cause the DH to flair for me. I had a major rash for weeks last summer. Once that finally cleared, I kept getting minor "flairs" that I've since found the cause. I forget where I saw them...but there is a sight that has pictures. good luck!

bookmama Newbie

Thank you for the replies. They were both helpful. It does sometimes feel as if I have tiny blisters that pop. I saw a family practice M.D. today. He had no idea what is causing the rash. He had never heard of celiac related rash. He recommended Sarna cream, or prescription strength hydrocortisone. Do you have experience with either of those taking the itch away? Or if it is truly DH, then nothing will help except Dapsone until the gluten anitbodies are gone?

Other questions: Could the iodine overdose have triggered DH? That is when I first noticed any skin changes.

Could DH spread over my whole body in 5-6 weeks? (not yet my face!)

Thank you again.

Julie

mother1 Newbie

I have had DH for many years. Triggered by immunizations when preparing for a trip to Argentina. It took 2 years to diagnose. You need to see a derm. so that a biopsy of a flair up can be sent to the lab. Good luck and don't procrastinate. Once you are diagnosed, life is so much better!

home-based-mom Contributor

Just anecdotal experience here, but I believe that more iodine than your body needs can cause skin problems - dh or otherwise. I was probably in my 30's or 40's (sorry - age and parenthood kind of blur the time line!) when I figured out that iodized salt made my face look like I was still in my teens. :(

I figure I get enough iodine from seafood and whatever else I ingest, so I buy plain salt and do better.

bookmama Newbie

Hi,

Thanks for your helpful replies. The two triggers I can come with are the B12 shots with preservatives, or on accidental overdose of iodine. I am not sure if what I have is DH or just hives. Can DH present as hives? It is driving me nuts! The rash is still spreading, so that it seems like it is hives, but I don't know what the cause is.

Can DH spread body-wide in 6 weeks? I have an appt with a dermatologist in another week - hope I survive that long! I made sure that this doc has experience with DH. If I try gluten-free for a week, will that help the rash, and also, can the rash still be tested? It is a good week to try elimination as I am off work this week for spring break.

I am also hypothyroid and low adrenal. Going on meds for those have helped enormously, but I still do not feel back to my normal self, so I do feel that there is something more that I need to do to feel healthy. I checked, and those meds are gluten-free.

So nice to get such helpful replies.

Julie


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



Celiac.com Sponsor (A8-M):



mother1 Newbie
Hi,

Thanks for your helpful replies. The two triggers I can come with are the B12 shots with preservatives, or on accidental overdose of iodine. I am not sure if what I have is DH or just hives. Can DH present as hives? It is driving me nuts! The rash is still spreading, so that it seems like it is hives, but I don't know what the cause is.

Can DH spread body-wide in 6 weeks? I have an appt with a dermatologist in another week - hope I survive that long! I made sure that this doc has experience with DH. If I try gluten-free for a week, will that help the rash, and also, can the rash still be tested? It is a good week to try elimination as I am off work this week for spring break.

I am also hypothyroid and low adrenal. Going on meds for those have helped enormously, but I still do not feel back to my normal self, so I do feel that there is something more that I need to do to feel healthy. I checked, and those meds are gluten-free.

So nice to get such helpful replies.

Julie

Going gluten free will help ... maybe not clear it completely in a week, but I think you will experience some relief. You will also be ahead of the game if you are diagnosed. Read every label, that includes lotions, hair products etc. It is so easy to accomplish with regular foods in the beginning, then you can start adding in gluten free products. Turn to food you prepare yourself, fresh meats, veggies, rice, fruit, etc. Avoid restaurants this week and minimize your condiments unless you know they are gluten-free. Your body will start to thank you quickly if it is DH.

bookmama Newbie

Mother1,

I am wandering around in the kitchen trying to figure out what I can eat! I have rice that is processed on machinery that also processes wheat. Is that a good enough start? I found a gluten-free packet of soup from Thai kitchen. Processed I know, but I'm hungary.

How did you know that the immunizations triggered your DH? Did your DH present as the "classic look" elbows, knees, etc. My rash looks more like combination of measles (where the redness covers wide areas) and very small chicken pox (not really blistery) I have never, ever had a skin condition before, other that acne.

This somewhat a repeat of what I said before, but I am defining what my be the cause of the rash; based on reading, talking to wonderful, experienced people on these forums, and personal health history.

1. It is DH triggered by either the Iodine or preservative in the B12.

2. It is hives triggered by either the Iodine or the preservative in the B12.

3. I do have underlying celiac disease, based on being more "gassy" than other members of my family (husband and kids), mother said she had "colitis or IBS". She was very thin before she died accidentally several years ago, so perhaps she was undiagnosed celiac disease. Also, a feeling of general malaise, that I have had forever.

I want to try going gluten-free asap, but if I do, it will be in the same time frame that the b12 and preservative is clearing my body. (if the preservative ever will, a pharmacist told me it will clear along with the b12, but wonder about it containing thimiserol) I will be seeing a derm next week and can bring all meds, including the B12, for testing, so I suppose that trying gluten-free as much as I can may help in several areas, and won't affect the testing.

Thanks,

Julie

bookmama Newbie

Other symptons of DH I forgot to mention are roving joint pain (burns rather that aches) and anemia. Right now, since tha rash started, my hip joint burns, sometimes takes my breath away.

Julie

mother1 Newbie
Mother1,

I am wandering around in the kitchen trying to figure out what I can eat! I have rice that is processed on machinery that also processes wheat. Is that a good enough start? I found a gluten-free packet of soup from Thai kitchen. Processed I know, but I'm hungary.

How did you know that the immunizations triggered your DH? Did your DH present as the "classic look" elbows, knees, etc. My rash looks more like combination of measles (where the redness covers wide areas) and very small chicken pox (not really blistery) I have never, ever had a skin condition before, other that acne.

This somewhat a repeat of what I said before, but I am defining what my be the cause of the rash; based on reading, talking to wonderful, experienced people on these forums, and personal health history.

1. It is DH triggered by either the Iodine or preservative in the B12.

2. It is hives triggered by either the Iodine or the preservative in the B12.

3. I do have underlying celiac disease, based on being more "gassy" than other members of my family (husband and kids), mother said she had "colitis or IBS". She was very thin before she died accidentally several years ago, so perhaps she was undiagnosed celiac disease. Also, a feeling of general malaise, that I have had forever.

I want to try going gluten-free asap, but if I do, it will be in the same time frame that the b12 and preservative is clearing my body. (if the preservative ever will, a pharmacist told me it will clear along with the b12, but wonder about it containing thimiserol) I will be seeing a derm next week and can bring all meds, including the B12, for testing, so I suppose that trying gluten-free as much as I can may help in several areas, and won't affect the testing.

Thanks,

Julie

First, have your soup! I also would not worry too much about the rice processing. That is just to cover themselves legally and it would have such a minor trace it won't hurt you. (my logic)

My immunization theory is based on process of elimination. I am told that you carry the DH genetically and something in life triggers it. Also, people who have dh also have celiac. I didn't learn that until 10 years after my diagnosis. I went thru the celiac testing last year and had no sprue in my intestinal tract. The GI says that is because I am on a totally gluten-free diet and have been for so long that my body is clean. Which reminds me, if you are diagnosed, do not abuse your body by using the dapsone as a crutch to eat gluten. You can manage your life gluten free with no problems and keep your liver strong during the process. I took the dapsone for the first few months to clear my body and relieve the symptoms. Then I carried it with me in case I inadvertantly ate something with gluten. I no longer even have the prescription.

I am trying to remember my rash and it was a long time back. My memory is all about the stress of the incessant itching. I had it from my ankles to my breasts. The first places I start to itch today, if something sneaks up to me, are my breasts and my hips. I don't recall having fluid on the rash. I think red and white spots that would end up bleeding from scratching.

flourgirl Apprentice

For me the DH flairs with iodized salt and with anti-inflamitories, like ibuprofen. The gluten-free diet will eventually clear up the rash. I had it positively everywhere and for many weeks. I tried bath soaks, and Calamine lotion (there's a clear one that doesn't look so obvious). While it didn't clear anything up it helped a little with the burning and itching. I was scratching in my sleep! I understand that it can reside in your skin for 2 years? Not sure. I wonder if then, the flairs will stop, too. Hope it goes away quickly for you....keep reading, and keep healing!

bookmama Newbie

Hi,

Just thought I would update on my gluten-free progress. It hasn't been too difficult to be gluten-free at home. My husband does most of the cooking, he doesn't believe that the rash could be gluten but is humoring me until I get this rash figured out. He thinks that I am reacting to the "pig" medicine (I am on Armour thyroid).

In the meantime, I haven't really noticed a difference in the itchyness, and it is still cropping up in new areas.

I have noticed that I feel lighter in the tummy area, but then I have had a slight virus for the past two days, and haven't had a big appetite. Although, I would be eating lots of carbs anyway, if I could. Could going gluten-free make a difference in how I feel in the tummy after only two days?

I had a test result come back:

IGA TISSUE TRANSGLUTAMINASE AB 3.0 Range: < 20.0- U

Does this mean I am positive (having any antibodies) or negative (under the limit). I also have thyroid disease, but I don't know if it is autoimmune or not. I had a test that showed thyroid antibodies once, then a negative test, and I haven't been tested for antibodies for five years. I read on this site that having thyroid disease can give a false positive, so I don't know if this test means anything for now.

Well, thats all for now.

Julie

Alona Newbie
I also have thyroid disease, but I don't know if it is autoimmune or not. I had a test that showed thyroid antibodies once, then a negative test

I have hushimoto's thyroiditis, it might be a good idea to have your antibodies checked again since it's been so long, especially if you have autoimmune in your family history, because it can be aquired (I was told since my mother has celiac I will need to be tested for that every 5 years).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,550
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.