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

I Am Miserable

casnco

By casnco
in Dermatitis Herpetiformis

Recommended Posts

casnco Enthusiast
casnco
Posted

I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

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

Celiac.com Sponsor (A8-M):


gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Sorry to hear you are having such problems. Do you have a good source for health foods? The reason I am asking is sometimes they can recommend a good herbalist/kinisiologist (sp?). The kinisiologist uses muscle testing to see which herbs , creams, etc will work best for you and how much and how often you should use it. I am the first to admit that I was the BIGGEST skeptic when I first went. But I saw immediate changes in my health and now trust the herbalist more than my regular doctor for my overall health. They listen to your body and use their knowledge to find products that work best for you. Hopefully you find some relief soon.

RiceGuy Collaborator
RiceGuy
Posted

Though you probably are already doing this, I'd recommend avoiding sources of iodine and salt. Kelp is perhaps the most common item in which there is a huge amount of iodine, but many vegetables contain more than table salt, such as broccoli. It may also help to limit protein intake. Drink plenty of plain water. A magnesium supplement may also help.

Take the advice given by gfgypsyqueen, and seek out knowledgeable people outside the mainstream medical profession. I received more help from a health store owner than I ever got from any doctor.

I hope you find relief soon. I'm sure it is very uncomfortable.

casnco Enthusiast
casnco
Posted
  • Author

Thank you both for your suggestions. I called my local natural food store and they recommended me to an herbalist. I am going to contact them this afternoon. I am very greatful for your time and suggestions.

Riceguy, can you elaborate on why protien should be avoided? Do you mean animal protien or all protien?

  • 3 weeks later...
Joan (Maine) Newbie
Joan (Maine)
Posted

My DH improves when I am not only gluten-free, but iodine controlled al that passes my lips..... seafood and dairy (iodine and lactose) are aggravators for me. I am vigilant about every morsel that passes my lips, makeup, personal care products.....even laundry detergents, etc.

I have lichen sclerosis and hypothyroidism. when they say autoimmune diseases often occur in clusters, they aren't kidding...I have a raft of professionals....specialists are frustrating, expensive, and seemingly uninterested in the big picture.Alternative pracioners have been much more responsive even though they have not been covered by my insurance.

Joan

wowzer Community Regular
wowzer
Posted

Good luck, I hope that you get relief soon. I know itching is no fun. I was itching for so long a year ago. Really nothing truly stopped it. I got a little bit of relief from pure prednisone cream. I have to say gluten free has been the best cure. Keep us posted.

casnco Enthusiast
casnco
Posted
  • Author

Wowzer and Joan: Thanks so much for your input. Wowzer. I have more anti itch ream than I knew was available to man! I am taking claritin and it seems to help a little.

Joan; I just went to an herbalist on Wednesday. Of course that is not magic and an overnight cure doesn't happen. I have a lot of faith that she will be able to help me. I see a dermitologist tomorrow and a GI in June. WaHoo! Love specalists!

I also was glutened yesterday. Crap! My SIL tried so hard. She made green beans w/new potatoes and cole slaw. And strawberries with cool whip. she sweetened the berries with her regular sugar. I am sure it was contaminated. I always used the same spoon to dip out all of my dry ingredients. I wasn't thinking. But I sue paid last night and will probably cont. to pay with DH sypmtoms. I don't know how much more of this I can take. Oh, well. I am sure as much as God believes I can take.

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

Celiac.com Sponsor (A8-M):


wowzer Community Regular
wowzer
Posted

I know at one point, it seemed like nothing stopped the itching, benadryl didn't even help much. No one could understand that itch. I hope you get relief soon.

SissySue Newbie
SissySue
Posted
I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

Ask your doctor to prescribe Atarax. I used it first in 1963; it worked and I had a remission until 1965, then another dose of it, and I had a remission until 1967. I had been free of the rash of DH until two weeks ago; I tried my husbands' Atarax prescription -- it was old from his use for Poison Oak, and there were 10 pills; I tried two--no help, then four--no help; there are four 25 mg tablets left, and I hate to leave him without relief if he gets poison oak again, but I'm getting desperate. I hadn't heard about the gluten free diet until this most recent recurrence two weeks ago. i hate this stuff! My first experience with DH occurred when I was 9 years old, and they had NO CLUE what it was; I went to one specialst after another all through grade school, high school, and then while I was in college my dermatologist got samples of Atarax and asked me to try it. It was like almost instantaneous relief. Try it and report back to us if you get any benefit.

  • 3 weeks later...
Lemontree Newbie
Lemontree
Posted
I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

fire34 Newbie
fire34
Posted

I'm not sure if these items are sulfur based but maybe? I had the worse case of itching I had ever had and I went through three dermatologists before one finally took a biopsy of a blister. The first thing she gave me was BETAMETHASONE 05% OIN 45GM and then some dapsone. It really soothed the itching and cleared up the rash within about a week and a half. Ask your doctor about it. I also received some Cobetasol Propinate solution for some blisters/raches that were in my beard and scalp. Hope this gives you an additional avenue of relief and helps keep the rash away.

Good Luck! My prayers are with you.

I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

Archived

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

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


  • Member Statistics

    • Total Members
      131,556
    • Most Online (within 30 mins)
      7,748
    Rachel Wilson
    Newest Member
    Rachel Wilson
    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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.