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

Could She Have Been Glutened?


Nikki'smom

Recommended Posts

Nikki'smom Apprentice

As I have said before my DD (7) is VERY lucky because she is very asymptomatic with her celiacs.

But Friday she had McDonalds cheeseburger no bun I did the whole wheat allergy thing to the workers i watched them make it etc. Then Sat morning she woke up and said she had a terrible head ache all day. I gave her some Tylonal but as soon as it wore off her head was hurting again. My 1st thought is maybe she is getting her little brothers cold but she had no other signs of a cold. By Sunday she was fine. Could the bad headache be a glutening?

Then Sunday night Hubby really wanted Wendy's we have eaten there before since my DD was diagnoised and the MGr was GREAT every time making the cheese burger himself saying if I ever have a problem in his location to tell him. Well this time I braved the drive through explaining the whole Wheat allergy to them and the kid taking the order said he completely understoon but one of the workers in the back came up and asked him about it while I was at the window so I explained it again in great detail. He said ok so I felt comfortable since we have eaten ther twice before. Well this morning she woke up saying her tummy hurt again. Of course I said Oh No I wonder if it was the Wendy's? I was in the shower when she told me it hurt so when I got out I asked her and she said she was fine now. UGH My 1st thought is she was afraid if she tells me her tummy hurt I will take Wendy's away too so she is hiding it. Could she have been glutened?


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



Celiac.com Sponsor (A8-M):



Ridgewalker Contributor

I would say it's entirely possible. One thing that has really astounded me, is the fact that once you eliminate gluten, the reaction upon getting glutened is much more severe than before.

My son definitely has a strong reaction when glutened, pretty different from what we were dealing with before going gluten-free.

-Sarah

taylor- Rookie

Thats usually how I can tell when I've eaten something! I get a massive headache that won't go away for hours. It usually happens when I go out to eat or when I used to eat in school cafeterias. I think for me it is from the cross contamination. Usually I get a headache if there is some sort of cross contamination and I get sick (stomache ache and bathroom trips) if I eat something that actually contains gluten ingredients.

I don't have very severe symptoms either. I was incredibly sick prior to diagnosis (at age 1 and a half), malnutrition and all that...but now, I usually just get a headache and occationally sick to my stomach.

gfpaperdoll Rookie

Always, ask for the manager at those places - they are the only ones that care to do it right. & they are the only ones that have been trained. The workers are going to nod & agree with you no matter what you say, even when they do not understand a word of it...

Nikki'smom Apprentice

Thank you so much! I will def ask for a mgr from now on it can't hurt right ;)

I am also wondering if it was the Tylonal we were giving her for her head ache because it happened again last night. I know she was gluten-free unless he had something in school she shouldn't have but she swears she didn't. She was saying to hubby her head really hurt last night so he gave her walmart brand kids tylonal and this morning she was doubled over in pain crying her tummy hurt. It could also be her gastritis? I am going to call the company to double check it the pills are gluten-free hubby said he checked and they where but you never know....

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.