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

I Glutened Myself On Purpose.


terr

Recommended Posts

terr Newbie

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

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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,367
    • Most Online (within 30 mins)
      7,748

    Brianman
    Newest Member
    Brianman
    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
      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
      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
      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
      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
      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...