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

Can Some Please Explain Dh?

Nikky10

By Nikky10
in Dermatitis Herpetiformis

Recommended Posts

Nikky10 Newbie
Nikky10
Posted

Hi, I am new and I noticed people talking about skin conditions. I have had a gluten allergy or intolerance for 10 years (I've never been tested but I think its an allergy), I only found out what it was 1 year ago which was a HUGE relief after 9 years of feeling like crap! Anyway I'm sure you all know exactly what I'm talking about.

I don't have any symptoms anymore unless I eat something with gluten but I still seem to have itchy skin alot, I thought maybe it was soap, so I got soap free body wash but it doesn't make a difference. Does anyone experience this? I also seem to be sesitive to other things like green tea made me break out in horrible hives and so did some dishwasher tables, also bananas make me very sick and now I'm having trouble with milk. I'm getting pretty upset about all these allergies or what ever they are appearing, I'm just wondering if they are connected to the gluten allergy and has anyone else experienced this? Any help will be much appreciated, thanks!

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

Celiac.com Sponsor (A8-M):


Josh Parker Newbie
Josh Parker
Posted

Hi Nikky,

I have celiac disease too. The problems associated with the disease are something that I have experienced too. I know the misery that is associated with the symptoms. I found out the hard way that many sufferers are also allergic to lactose. Lactose can give similiar symtoms such as indigestion and itching. Also look into MSG and see if you are allergic to that as well. It will produce similiar symptoms. It gives me headaches, itching, and I feel like I want to die. There is an enzyme that you can take called lactase which can help you with digestion in regard to dairy products. Just don't assume that you can consume as much dairy as you want though. Take in a minimal amount of dairy. A normal person's stomach produces an enzyme called lactase which breaks down the dairy. My stomach doesn't produce it, so I have to take the pills immediately if I consume some dairy. The pills are only $10 for a 30 day supply, and they are over the counter. They come in Vanilla or plain.

Here are some foods that contain gluten that you may be consuming and not know it. Cokes contain wheat when the caramel coloring is processed with wheat. Pepsi says that none of their products contain wheat according to a newsletter. According to a report, caramel coloring made in the US is not made from wheat. I would not trust Coca Cola because their newsletter did not say whether they used wheat in their processing. YOu may want to find out and research. Soy sauce has wheat. San-J soy sauce is wheat free. It is sold at Harry's Farmer's Market. If you are distraught about having to give up a lot of dairy products, then that is a normal reaction. I went through that but I learned to substitute Soy Milk and Soy Ice Cream for these items. I can still eat Fruity Pebbles (HA HA HA) since it is made with corn. Eating a trace amount of wheat can ruin you for a whole week. The misery and depression comes along with the headaches, fatigue, irritability, and indigestion. Insomnia is also another symptom which comes with the disease. Benedryl helps, but I would not recommend it unless it is absolutely necessary to make the itching subside.

Nikky10 Newbie
Nikky10
Posted
  • Author

Hi Josh,

Thanks for your reply, it was very helpful. I'm glad you mentioned MSG, I had one of those packaged taco packs that are gluten free not long ago and had a similar rection as I do to gluten and I couldn't figure out why, it has MSG in it. It was probably that. Also I found it interesting that you said coke has wheat in it, I was 100% sure that was safe, it sounds like you are from the US so I'm not sure if it's the same here (Australia) but I'm going to do some research. I have cut down on dairy, which is hard, and I am having lactose free milk at the moment because I heard that soy milk has wheat in it. Just to let you know I found that Aloe Vera juice really helps when you gluten yourself, it tastes like crap but it's worth it, just make sure it's pure. I have had a really bad week, glutened myself twice! I brought some Bullet Bourbons because bourbon is safe but what I didn't read on the can was that it is bourbon/whiskey! I was drinking it and my throat was swelling up. Then yesterday I got some vegemite (that's an aussie spread) in a cut on my finger, I didn't think that would do anything but it did! So now I have the week or 2 of crap! And no one seems to understand how bad it actually is (unless you have been through it).

happygirl Collaborator
happygirl
Posted

All Coke and Pepsi products are gluten free. Wheat, by law, must be listed on the label, if present.

San-J has a wheat free soy sauce, as well as one with wheat.

lovegrov Collaborator
lovegrov
Posted

"Cokes contain wheat when the caramel coloring is processed with wheat."

Doesn't happen. And if it did they would be REQUIRED by law in the U.S. to list the wheat. Coke is gluten-free.

richard

Snow Angel Newbie
Snow Angel
Posted
green tea made me break out in horrible hives

Some green tea is gluten free, some is not...check your brand. I have read some have barley but I think that is in restaurants. I don't know what it is in tea that would be gluten otherwise. He is my current list of gluten-free teas. I have checked the websites just recently.

Tazo Tea 10/08 All of our teas are gluten free, except for the following: Green Ginger (teabag), Tazo Honeybush

(teabag) and premade drinks: Lemon Ginger (bottled tea) & Tea Lemonade (bottled tea).

Stash 10/08 All of our teas are gluten-free.

www.stashtea.com/teafaq.htm#21

Celestial Green Tea: 10/08: Green tea, Organic green tea,Decaf Green Tea, Decaf Mandarin Orchard Green Tea, Honey Lemon Ginseng Green Tea, Raspberry Gardens Green Tea, Blueberry Breeze

Nikky10 Newbie
Nikky10
Posted
  • Author

Thanks Snow Angel

I didn't think any tea had gluten in it, I'll look into that. I think I am just allergic to green tea because I didn't get the same reaction as I do to gluten.

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

Celiac.com Sponsor (A8-M):


Snow Angel Newbie
Snow Angel
Posted
Thanks Snow Angel

I didn't think any tea had gluten in it, I'll look into that. I think I am just allergic to green tea because I didn't get the same reaction as I do to gluten.

You welcome, maybe your reaction is for another reason or barley feels different then wheat.. idk... I haven't figured it out & probably never will.., but unfortunately if you can't eat gluten then you can't trust any prepared food or DRINKS. (so far bottled water hasn't done me in Yet!!) I just hope it goes away for you.

Nikky10 Newbie
Nikky10
Posted
  • Author

It could be something else that was in the tea, I'll never know because I don't have the packet anymore and I can't remember which one it was. But I have never even touched green tea since! I'm too scared. The thing is I was told that green tea helps which allergic reactions so I kept drinking it until almost my entire body was covered, it was worse than a gluten reaction. The only other thing I can think of is some sort of chemical was in the tea, because I got hives not long ago from drinking from a glass that had been washed in a dishwasher (worked out it was the dishwashing tablets). And I think I may have to give up milk, my reactions are getting worst. Every morning after my coffee and cerial I seem to get ichy and my throat swells up a bit and tired all day, just like my gluten reaction but a little less. I'm going for treatment in a could of weeks, so I'm crossing my fingers coz I am sick of allergies!

happygirl Collaborator
happygirl
Posted

What type of cereal are you eating?

Nikky10 Newbie
Nikky10
Posted
  • Author
What type of cereal are you eating?

Gluten free corn flakes usually, but I made some homemade cerial with corn flakes, rice flakes, sunflower seeds, saltanas and berries.

linuxprincess Rookie
linuxprincess
Posted

I do want to point out one small thing about Josh's post: Normally when a person reacts to lactose or any other milk protein it is because the body treats it the same way as gluten not because the lactase is missing from the process. That sounds like a lactose intolerant issue.

One main difference between lactose intolerance and Celiac patients that cannot have milk products is the ability for Celiac's to have ghee which is something lactose intolerant people cannot have.

jmoore47 Newbie
jmoore47
Posted
Hi, I am new and I noticed people talking about skin conditions. I have had a gluten allergy or intolerance for 10 years (I've never been tested but I think its an allergy), I only found out what it was 1 year ago which was a HUGE relief after 9 years of feeling like crap! Anyway I'm sure you all know exactly what I'm talking about.

I don't have any symptoms anymore unless I eat something with gluten but I still seem to have itchy skin alot, I thought maybe it was soap, so I got soap free body wash but it doesn't make a difference. Does anyone experience this? I also seem to be sesitive to other things like green tea made me break out in horrible hives and so did some dishwasher tables, also bananas make me very sick and now I'm having trouble with milk. I'm getting pretty upset about all these allergies or what ever they are appearing, I'm just wondering if they are connected to the gluten allergy and has anyone else experienced this? Any help will be much appreciated, thanks!

Nikky,

I have Dermatitis Herpetiformis, and my doctor told me that if I have that, then I am Celiac (gluten intollerant) and cannot have any gluten from wheat, barley, rye, or oats. I have been struggling with this now since April, and I have had the rash off and on my whole life. Gluten is in a lot of stuff like pills, hand lotion, food, etc. Now that I am sticking to the gluten free diet, I am not having any more rashes. They look a lot like hives and are very itchy. We went to a seminar and the doctor said that since our villi are chopped off, we cannot get the nutrients we need, so we have problems with a lot of other foods until our villi grow back. I had to leave out dairy and all grains (even the ones that do not have gluten, like rice) for about 8 weeks. Good luck! It gets better.

Joanne

  • 1 month later...
Paulppaul Newbie
Paulppaul
Posted

Celiacs are probably not all lactose intolerant but are intolerant to the proteins in dairy products. I don't believe ghee has much of those proteins.

Janessa Rookie
Janessa
Posted

I get super itchy skin with gluten (never diagnosed with DH) but I also get similar itchiness with other grains that cause me problems like corn. So you could be reacting to something else. Also check and double check all your toiletries

clydeshannon5 Rookie
clydeshannon5
Posted

get the book "the gluten connection" by Dr. Sheri Leiberman. It explains that Malt flavoring has the same effects as glutten, because it is in the same family. So I haven't found a cereal yet that doesn't add malt flavoring, even if it is corn based. So I stick to eggs!! Cream of Rice is a great breakfast alternative too, taste great with a little raw cane sugar. There is a great diet called the SCD diet ( i think that's right) basically it is "eat fruits, veggies, and meat (nuts if you can tolerate them) stay away from all processed foods. Drink water only. Do this for 2-6 weeks and see what happens. Once the gut is given time to heal usually the other symptoms go away, and things can be tolerated again. When in doubt about what to eat, I just think to myself "if I lived on a farm and could never buy food at a grocery store, what would there be to eat?" So not trying to "replace" all the food you normally consume with gluten free, but instead, change the habit of what is eaten.

something to think about, hope it helps, or at least may lead to something that could help.

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • 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
      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.