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

What Do You Think - Gluten Challenge


beebs

Recommended Posts

beebs Enthusiast

My eldest and middle child both need to do challenges at some point, our specialist said to give my eldest a good year at school, because he missed about half of preschool when he was sick. So keep him gluten-free and we'll try next year.

With my younger one (who is 2 and a half) he says we should wait a few years. But I don't want him having a terrible time at school like my eldest one did, he missed so much preschool that he didn't make any friends really because he was in and out in and out.

Me n DH think we should do the younger one earlier - before preschool etc, what would you do in the situation? The specialist said "as a doctor you can do it now, as a dad, I would wait"


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



Celiac.com Sponsor (A8-M):



Mizzo Enthusiast

Why are you doing a challenge ? is it for an endoscopy ? How long have they been gluten free ?

beebs Enthusiast

He had an endo in Jan, there was inflammation and increased lymphocytes, but not enough for a diagnosis of anything, he went on nexium and started a gluten-free diet and has improved but there are still problems with his stool, so we are not sure if its celiac, if the gluten-free diet has stopped the constant vomiting or was it the nexium, or if he has something else as well as celiac. If he were completely better gluten-free I'm not sure I would bother with the challenge for an official diag, but because it seems like it could be celiac or something else or both I feel I should be thorough.

Mizzo Enthusiast

For your oldest

IMO prolonging the inevitable is just that. You have decided to do a challenge , so do it as soon as possible. There will be missed school days , works days etc.. no matter when you do it unless you wait till summer break.

Also, when a person is gluten free for a period and then goes back on gluten it is a far worse experience as your body was healing. So be prepared for the worse. My DD is gluten-free 1 1/2 yrs and simple cross contamination gives her reactions as bad as pre diagnosis when she was eating gluten regularly.

Your youngest is different as he/she usually cannot fully express their pains and emotions verbally to you. You may want to wait until they are older for that reason. However if you do them both at the same time you can get it done with all at once. You know your kids best I think it's more your call on that.

good luck with your decisions

beebs Enthusiast

I forgot about that, if I eat gluten now its enough to put me in ER. The youngest had pretty bad symptoms anyway, but I'm just not sure if its Gluten. To be honest - if he gets suddenly bad and I know its gluten - then I will stop the challenge, I'll be happy to just know if its gluten or not - I am not hell bent on an official diag if it will make him too sick!

They have both been gluten-free for almost a year now.

salexander421 Enthusiast

Personally I would not do the challenge. There is a lot of research going on right now and you don't know what testing will be like in a few years. If they do have celiac and you give them gluten for a prolonged period of time (at least 3 months is needed for testing) then it puts them at an increased risk of developing other autoimmune disorders. And, it can make them more sensitive.

I know it's hard not having answers but I have found out the hard way that, with gluten intolerance, sometimes you just don't get all the answers. Gluten intolerance and celiac are so complex that they just don't know enough about it. They're working on a vaccine right now for celiac, just wait...once that is out doctors will start being more informed and hopefully testing will improve.

Have you investigated other food intolerances like dairy, soy, eggs, etc? It's not uncommon for these to accompany celiac.

beebs Enthusiast

He has a problem with lactose and has done since birth, I thought it was because of the inflammation in the gut but it hasn't gone away even though he has been gluten-free for a year. We took him off dairy for 2 months, but he didn't seem any different that when he was just lactose free iykwim. Haven't tried all the other things yet, I was just trying to do one thing at a time, although I think he needs to go on a restricted diet for intolerances because there is obviously something else going on.


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



Celiac.com Sponsor (A8-M):



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
      131,907
    • Most Online (within 30 mins)
      7,748

    Lori4050
    Newest Member
    Lori4050
    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.