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

Do Your Parents Think You Are Crazy?


Lexi

Recommended Posts

Lexi Enthusiast

Wow - I am so frustrated! My parents just spent the weekend with my family because I was very sick, and they were trying to help out with my kids. Oh, what a big help that was! My Parents kept letting me know that they basically think I am crazy because I insist on using my own set of pans and utensils. Then my Mom will always try to cook something for me that I can't have, and I have to keep explaining EVERYTHING! They are supportive of me with Celiac Disease in itself, but they just can't seem to get all the crazy things that go along with it. I also have Candida, and they think I need to go to more Doctors to get second opinions because they have never heard of such a crazy thing. I wish there was some kind of class that family members could attend to understand the life of a Celiac. The hardest part is that I end up having a miserable time when they come to visit now. Anyone else go through this???


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



Celiac.com Sponsor (A8-M):



oceangirl Collaborator

Yup!

My older parents can't grasp the extenuating circumstances, either. Frustrating- I don't even try anymore.

It's hard to imagine walking in someone else's moccasins, I guess...

lisa

pennypicker Newbie

Absolutely.

I saw my parents for the first time post-Dx right around Christmas. They didn't intend to be rude, but because of a total lack of understanding, it appeared that way. They were most confused about cc and poorly labeled products. Educating some people, especially people I've known for a long time, is very difficult for me to do. I think it's because I used to be able to eat anything I wanted with them, and now I can't and it doesn't make sense to them. Counter intuitively, people I've met post-Dx seem to be more accepting, because this is the only way they've ever seen me.

NorthernElf Enthusiast

Yeah, I guess my folks go both ways too - supportive and then...not so much.

A couple of visits ago (they live 6 hours away) my mom bough gluten-free pasta and chips and such for me, which I thought was nice. At Christmas she had a lasagna made for us to eat when we arrived - NOT gluten-free. Very frustrating since we got there at 7 and I was hungry...but I do travel with my own food. Our last meal while I was there was store bought chicken wings (not gluten-free) and frozen fries. I sat there with my salad and toasted gluten-free bread. My mom actually said I was making her feel guilty. Oh, I so bit my tongue (wanted to say that she should !!). The sad part - I think the comment was actually more about me eating a healthy meal versus a fatty one, nothing to do with gluten. <_<

I'm spending a week with my inlaws in March - I'm bringing a lot of my own food and there is a Whole Foods near them so I will be shopping there ! My MIL is actually better with the diet than my mother.

I just think that they have fed me gluten all my life and don't get that I can't have it now - I don't live near them. My folks are also always on diets (weight loss) & I think they don't get a NECESASSARY diet at all.

FWIW, my DH was upset at my folks and their lack of support - he would never say anything directly to them (neither did I). I figure they'll get it eventually because I always eat gluten-free. DH certainly gets it - he knows what I'm like when I'm sick !!!

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):



  • Who's Online (See full list)

  • 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.