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

He Didn't Get Glutened!


domesticactivist

Recommended Posts

domesticactivist Collaborator

I just want to put some positivity out there today.

Last weekend we went to an end of summer BBQ potluck. The people hosting it have been truly gluten-free for over a year and are into whole foods and GAPS (though not as careful with GAPS as we are).

Jupiter was a little bummed about going to a BBQ at first, he said "there'll probably be gluten everywhere." He was surprised when I said it would be mostly gluten-free and GAPS-legal.

I was still worried because not all the dishes were gluten-free since it was a potluck. Also, I never truly trust someone else's kitchen. But we decided it was the safest place to try having the food.

We made sure our son got served right away, and only ate the dishes that were prepared by our host and which she specifically told us all the ingredients of. At one point a kid offered him a dish of something and I overheard him say (very assertively) "I have celiac disease and that has gluten. If I eat it I will get very sick!"

AND he didn't get sick! He didn't get bone, joint, or muscle pain! He could still read, do his math, and piano today!

We're super lucky to have some truly gluten-free friends, and it was SO nice to go to someone's house and say yes to something that was offered. It has been a long time since we've done that, and it felt really good!


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



Celiac.com Sponsor (A8-M):



Mizzo Enthusiast

I also have a friend who has invited us for a BBQ cookout and another time a BBQ pool birthday party. Both times they were 95% Gluten free. which according to her was pretty easy. Fruit salads, veggie platters some chips and salsa/dips etc..

The only thing non gluten free was the grill ( aluminum foil for our gluten-free hot dogs or hamburgers no problem) and the buns, We brought our own. I might add my family has not even come close to this as they love their pasta's and noodle slaw etc.. desserts.

It's good to have at least a friend or two who understands.

I also have a friend who has 1 daughter w/ pnut/nut allergies, her other girl is pnut/nut , soy, dairy and poss wheat, a third child of undetermined as he is only 2. SHE knows the need to be careful we often throw pity/anger parties together. :)

I finally got up the nerve to ask our DD's teacher this year to not allow birthday party foods in class. Guess what, she was happy to comply less worries for her she said. Another non-worry to check off.

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. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    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.