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

Gluten Free And Loving It.


CRashster

Recommended Posts

CRashster Newbie

I'm CRash, I'm 46, male and live in Tennessee. I've suffered from hives of unknown origin for 10 years. They are/were getting worse and worse. I suffered depression and started getting iritis. I've had no energy and crawled into bed as much as I could. Been to allergy doctors at Vanderbilt and all they seem to do is increase my meds. They did a scratch test and no food allergies showed up. 4 Zyrtec a day is too much for me. I tried quitting dairy, meat, caffeine, nothing seemed to work. One day I started thinking about gluten. I didn't really know what it was, or how to quit. I overheard an old acquaintance telling someone he had gone gluten free. When I had a chance I went over and spoke with him. Basically, he told me how gluten affected him and how he went gluten free. Last weekend, I took the plunge. I quit gluten. I tried to quit 100%, but kept finding hidden gluten. It was in a probiotic I was taking. Other places, here and there. Last Thursday, the hives stopped. Yesterday, I stopped all my meds, no Allegra, no Doxepin. It was scary. I've kept Zyrtec and an Epipen close at hand. But, so far, so good. No hives. Better energy. My mind is unfogging. A swelling sensation here and there, but nothing ever shows up. My eyes are clear. I'm basically living on Chex, Scoops and ground beef on corn tortillas. But that's alright with me. In time, I'll try other things. I hope to be a gluten free success story. I hope to have some sort of life back.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

Looks like you might have had an allergy to it :) By all means stay that way.

rosetapper23 Explorer

Welcome, CRash! Your story is one that is told here on a daily basis. Isn't it wonderful to finally know "the answer"? It sounds as though you're on the road to recovery and will have your life back shortly. What great news!!

You'll find that eating natural foods, rather than gluten-free substitutes, will help you heal faster and allow for less gluten cross-contamination. Because your rash may have been Dermatitis Herpetiformis (the skin disease associated with celiac disease) rather than an allergic rash, you might consider eliminating iodine from your diet for a while, too. For the rash to erupt for many of us who suffer from DH, we need to ingest both gluten and iodine.

If you like to barbecue, be sure to really clean your grill beforehand to get all remnants of barbecue sauce and bread off of it. Meat is a good food to eat, as are vegetables, fruits, nuts, eggs, beans, rice, potatoes, and dairy (if you're able to eat dairy). If you like soy sauce, wheat-free Tamari sauce is a good substitute. When it comes to medications, you can check them for gluten-free status at www.glutenfreedrugs.com . If, however, you don't see the drug listed there, you'll need to call the lab directly because they don't have to list gluten if it's used as a filler.

As for gluten-free breads, I can personally recommend Against the Grain Gourmet baguettes, Rudi's, and Udi's. They're usually found in the frozen-food sections of upscale supermarkets like Whole Foods. Remember, though, you need to use a toaster that has never toasted gluten-containing bread. One of the best gluten-free pastas is made by Tinkiyada, and there are gluten-free lasagna noodles sold by several companies. As for crackers, I like Crunchmaster best, and you can find them in the regular cracker aisle at most supermarkets. Glutino makes a good line of Ritz'like gluten-free crackers, but they're sold on the gluten-free aisle. Also, Cocoa Pebbles, Fruity Pebbles (not the ones with the marshmallows, though), and specially marked boxes of Rice Krispies are also gluten free. See's Candies are all gluten free except for the fancy flower frosting on the Easter eggs.

Good luck with your "new" life!

Bubba's Mom Enthusiast

I hope that keeping gluten out of your diet is the answer for you! You've suffered symptoms for quite a long time. It must be wonderful to finally be getting some relief?

Get a new toothbrush and only use pans that don't have a scratched non-stick coating. Get new wooden spoons for stirring things if you use them when cooking.

Gluten is hidden in a lot of things, so you'll have to read a lot of labels. Check your shampoo and whatever soaps, toothpaste, etc. that you use. I was surprised to see that my favorite shampoo had wheat as two of the ingredients!

If you stick to a strict diet you should see other symptoms that you didn't know you had..go away over time as well. :D

Jenniferxgfx Contributor

Ive found dairy and iodine to be triggers for my skin. Congrats on solving the mystery!! Welcome! This forum has been SO helpful.

Don't forget your veggies and fruits :)

T.H. Community Regular

Oh congrats! Here's hoping that you are a success story as well!

It's shocking to have this sort of thing just up and go away from one, little ingredient change, isn't it? Shocking but really, really great. :-D

zimmer Rookie

Glad you're feeling better! I'm in TN, too. FYI - found a GI, Dr. Christopher Lind, at Vandy. He is very knowledgable and easy to talk to and has also been a speaker for the local support group.


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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

Sounds like you may be allergic to wheat. I get hives from lotions and other personal care products with wheat in them. My scratch test did not show up any food allergies either but my IgE allergy blood test showed a wheat allergy. I also have other symptoms that indicate I have trouble with other forms of gltuen too (barely, malt, rye, etc) so I stay away from ALL gltuen not just wheat. My allergist said the blood tests and scratch allergy tests are not perfect and just because you don't show anything doesn't mean you can't be allergic. I am allergic to milk now to the point where my throat closes shut and i have to carry an epipen. However my allergy tests for milk ALL came back as negative. My allergist said to avoid it anyway and not to risk my life just because the test was negative.

CRashster Newbie

Ok, today, not so great. Had a hive on my back last night, went away this morning, and now two very small ones on my head. Also, a bit of depression this morning. Is this some sort of gluten working through my system, since it's only been like ten days, or am I on the wrong track? We ate dinner at a restaurant last night and although what I had was supposedly gluten free, I have my doubts. I had to explain to the waitress what gluten is. Energy was decent today, not as good as yesterday, but not as bad as usual. Also, thanks everyone for the comments and good tips.

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. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

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

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    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

    • klmgarland
      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
      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
      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
      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.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  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.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.