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 Glutened Myself On Purpose.

terr

Recommended Posts

terr Newbie
terr
Posted

Hello to all. I stumbled onto this forum about three months ago when trying to figure out this insanely itchy rash that has lasted the better part of 2 years.. I was told that it was hives and that I should take h1s and h2s (zyrtec, and zantac) together and that it would go away in time. Towards the end of the worst 2 years of my 38 I started having horrific GI symptoms as well and googled the 2 symptoms together. Everything pointed towards gluten intolerance for me. I have lost a grandfather and a great-grandfather (opposite sides of family) to cancer of the esophagus, and lost my maternal grandfather to colon cancer which spread to bone. My sister has Turner's Syndrome which ups my family's chance of being gluten intolerant. We also have eczema, psoriasis, asthma, a laundry list of indoor/ outdoor allergies, and I have at least one relative with diabetes.

I was comfortable with this (self) diagnosis and went off gluten. I have been Gluten-Free for 11 weeks and started seeing massive improvement. No GI symptoms at all. They went away immediately. My rash still came on whenever I would exercise (sweat), after a hot or too warm shower, first thing in the morning, and after any instance of stress, an argument with a friend once gave me a rash, etc.. But, it was more manageable than before when I WAS eating gluten.

I had a slight trace of rash on my neck when I went to Thanksgiving dinner with friends and spent some time with my friend who is a physician's assistant. Let me start by saying that most of my friends give me quite a bit of crap over the fact that I am suddenly Gluten-Free and they scoff at my self-diagnosis. I don't have health insurance (or a steady job). No one wants to hire a leper apparently..

In any case, this friend of mine thinks I have eczema. The rash is in all the usual eczema places, inside elbows, neck, chest and the lower part of my face. It starts out feeling kinda wet- especially the folds in my neck, then a day or so after it starts to dry up and gets really dry. I can moisturize for a half hour before it starts to feel like skin again..

Fast forward to two days ago.. I had a little bit of a sweat-induced rash from riding my bike to a painting gig that I am doing, and I stopped to get some lunch at a middle eastern restaurant that I love. Lots of safe menu items and what do I order? A fracking felafel sandwich! And I did it on purpose. I wanted to see if ingesting gluten now after 11 weeks off would spark symptoms and guess what? I spent the last 2 days in bed. I have slept for 14 hours both today and yesterday. My rash is OUT OF CONTROL, and I think it's now showing up on the backs of my knees!

Does anyone here have a rash like this? It seems to have characteristics of DH, eczema, and urticaria. I scratch it at night until I bleed. It doesn't even wake me up. It comes on when I sweat, in the morning, after sex and showers.. even if I finish in cold water.

Despite this stupid, stupid experiment, I had made some serious progress. I am positive that I have a gluten problem. What I can't quite figure out is the rash. If I stay on this diet forever (I will), will the rash go away? Regardless of what kind of rash it turns out to be? Why do I sleep for so long when it gets bad?

I am going to cut out dairy completely from now on, along with gluten and prepare all my meals myself and see if that helps.. If anyone has had a rash like this, PLEASE share your story. This rash is actually ruining my life.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Well, I don't know if I've had a rash "like" yours but I have a gluten-sensitive rash that is probably DH.

So, now you are pretty sure the rash responds to gluten...so stay away from gluten.

There are several gluten sensitive rashes - eczema, psoriasis, DH, and some I can't spell yet. Having one or the other (or more than one, ick) is miserable.

If you want to try low-iodone in conjunction with gluten-free, milk free you may see some relief if it's DH. You're more than halfway there, btw, going milk free. Google "thyca" for diet info.

Ice packs help me...as does low-iodone. And I use Vanicream lotion.

I just broke out in my first real rash since low-iodone and I am guessing I'm on the right track because I barely broke out and they are pinprick sized bumps instead of penny-sized. I'm working under the assumption the iga levels are falling and there's just not as much there to react with.

Di2011 Enthusiast
Di2011
Posted

Terr,

I'm starting to get that skin problems that may be gluten related seem to be the worst kind of issue for TEMPTATION. I have some advice, and I am still head to ankle DH: DONT DO THE TEMPTATION / TEST GLUTEN. You WILL NOT KNOW if gluten is the problem unless you eliminate it from your diet LONG TERM. I have been strictly (((and I mean strictly))) for four months and I am seeing the best results in the past 3-4 weeks.

I was tempted and made mistakes and IT DOESN'T WORK.

If you really want to know if it is the glutens causing your problems then you need to TEST Gluten-free for months.

Be brave.

Archived

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

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


  • Member Statistics

    • Total Members
      131,911
    • Most Online (within 30 mins)
      7,748
    Cici123
    Newest Member
    Cici123
    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

    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.