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

A Big Surprise Of My Life!

Simona19

By Simona19
in Coping with Celiac Disease

Recommended Posts

Simona19 Collaborator
Simona19
Posted

Hi!

On Saturday I attendet my Girlfriend's Bitrhday party. She knows me and my medical history for about 5 years. She was so kind and made gluten and casein free dinner for me. I was very thankful for that, but the remark what she told at the end was the biggest surprise of my life. She said: " You need to change your job because all your problems with allergies and intolerances are in your head. Change your job and you will feel better." Other friend agreed to that. I was stunned. What? I made my food intolerances and allergies in my head? How? I explain to them that I'm not depresed and I'm not making nothig in my head. My body is reacting to something - nuts, flour, milk casein, kiwi, fructose and more.

And the worst part from this is that my friend was a nurse in my country for many years and here, in the USA, she is a nurse assistent, or caregiver. She was in school for that. I can't get over that.

I just wanted to share this with somebody who understand.

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

Celiac.com Sponsor (A8-M):


CMCM Rising Star
CMCM
Posted

It's really quite amazing how many people (who have no "issues" or at least who think they don't) are totally insensitive and uncomprehending and unempathetic about it. Forty years ago when my mom was so sick and as yet undiagnosed (because so few doctors knew anything about celiac disease), she had a whole string of doctors who told her it was in her head. As for other people in her life, they were of course totally ignorant about celiac disease and its effects, so they often seemed to think my mom was overacting about it all...."Can't you eat just a little bit of gluten?" She should have invited such people into the bathroom with her as she threw up for hours and of course the D that went with it all.

I think you just have to accept and understand that this is how people often are, and how they often don't take this seriously. Nothing you can do about all this, either, but learn to not let it bother you!

gary'sgirl Explorer
gary'sgirl
Posted

Hi!

On Saturday I attendet my Girlfriend's Bitrhday party. She knows me and my medical history for about 5 years. She was so kind and made gluten and casein free dinner for me. I was very thankful for that, but the remark what she told at the end was the biggest surprise of my life. She said: " You need to change your job because all your problems with allergies and intolerances are in your head. Change your job and you will feel better." Other friend agreed to that. I was stunned. What? I made my food intolerances and allergies in my head? How? I explain to them that I'm not depresed and I'm not making nothig in my head. My body is reacting to something - nuts, flour, milk casein, kiwi, fructose and more.

And the worst part from this is that my friend was a nurs in my country for many years and here, in the USA, she is nurs assistent, or caregiver. She was in school for that. I can't get over that.

I just wanted to share this with somebody who understand.

I'm so sorry that your friends responded in this way. I don't know what people are thinking when they say such ignorant things such as what your friend said to you. I come across responses like this too - I'm sure I would more, but I am pretty much secluded from people right now, but they still say really discouraging things.

Try to remember that they have no idea what it's like to have a problem like this and even if they do some times people just can't look past what they are going through.

I wish all of us could have a close friend that live near us who was going through the same thing and could understand and just be an encouragement.

I hope you have some encouragement soon!

~Sarah

lynnelise Apprentice
lynnelise
Posted

I think one reason that people like to think that stuff like this only exists in our mind because to admit that it's real would be admitting it could happen to them. My friends and family act like their whole world would be over without gluten. It's really ridiculous to give food that much power over your life but they do it. Just ignore them. You know the truth. Give them graphic details about what happens when you eat gluten if that is what it takes. Also point out that if your job was the cause of your issues then removing a food from your diet wouldn't make any difference at all assuming you still work the same job!

Dixiebell Contributor
Dixiebell
Posted

I think one reason that people like to think that stuff like this only exists in our mind because to admit that it's real would be admitting it could happen to them.

Well said lynnelise.

This is so true.

kareng Grand Master
kareng
Posted

I'll tell you another reason people think food problems are all in our heads. When my High School senior was in grade school, peanut allergies were all the rage. I know they are real and immediately life threatening. We had so many kids with supposed peanut allergies eating M& Ms and fries cooked in peanut oil. Kids with allergies to things they didn't like like broccoli. It was nuts! It got to the point that if you offered some of these kids something they didn't want, instead of " No, thank you.". You got " I'm allergic!"

I felt bad for the kid with the real peanut allergy.

Oh yeah! Most of the active boys had ADHD. I said mine just needs a bit of exercise each day.

Katie B Apprentice
Katie B
Posted

This would be in my "time to get new friends" category - but you would know more about the context. Oftentimes you can't force people to understand things even if there are a million sources on the internet (and your friend is a nurse?!).

Fine to still talk to them but it might be nice to make some more connections with people who you don't have to convince.

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

Celiac.com Sponsor (A8-M):


Simona19 Collaborator
Simona19
Posted
  • Author

Thank you for the kind words of comfort. It helps to know that I'm not alone. I think it was a long time ago that my friend - nurse gradueted from her nursing school. I wasn't even able to say something. All guests agreed with her. I just looked at my mom and shook my head with disbelieve. I can't get over, still. I'm lucky that my mom is on my side. She was the one who forced me to go gluten free.

Thank you again for all your replies. I hope that ones there will be time when people and specialy doctors would know and understand the celiac disease. B)B)B)

mamaw Community Regular
mamaw
Posted

Why didn't she tell you how she really feels! People are so clueless, even in the medical profession.. Sorry you had to experience that ---- I would ditch the friend & find one that truly understands & cares for you as you are...gluten free & all !!!! The good news is you are not married to her......

sandsurfgirl Collaborator
sandsurfgirl
Posted

I would LOVE it if celiac were in my head. Too bad I have BLOOD TESTS to prove otherwise. EYEROLL. I'm so sorry that happened to you. I'm sure you would have loved to slap them... in your head of course.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?

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

      I think I am gluten intolerant

      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 p...
  • 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
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      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
      My only proof

      By Scott Adams · Posted

      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
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      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
      I think I am gluten intolerant

      By Scott Adams · Posted

      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.