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

The Others...

Katester

By Katester
in Coping with Celiac Disease

Recommended Posts

Katester Enthusiast
Katester
Posted

Ever since I've been diagnosed, I've adjusted my eating habits and everything. I'm careful about what I eat and what I can't eat. The thing that gets me is that no one understands. I get stomach aches usually all the time. Everyone thinks that I just can't eat gluten but I should be fine. No one understand that I actually feel pain very often. People think I'm faking to get out of school and stuff like that. My parents try and act like they're there for me but I know they are having a hard time believing me too. I don't have the time I need to heal because of how fast the world is moving. Just frustrated I guess...

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Ever since I've been diagnosed, I've adjusted my eating habits and everything. I'm careful about what I eat and what I can't eat. The thing that gets me is that no one understands. I get stomach aches usually all the time. Everyone thinks that I just can't eat gluten but I should be fine. No one understand that I actually feel pain very often. People think I'm faking to get out of school and stuff like that. My parents try and act like they're there for me but I know they are having a hard time believing me too. I don't have the time I need to heal because of how fast the world is moving. Just frustrated I guess...

We understand here.

It can be very tough, how long ago were you diagnosed? Are you the only one in the house that is gluten free right now? I hope the doctor who diagnosed you let everyone know that they need to be tested also. If you haven't been doing the diet for very long it can take some time to heal. It can also take time to ferret out hidden gluten sources like in our shampoos, cosmetics and even stuff like pet food. You have found a good place with a lot of folks who will understand. Make sure you ask any questions you need to. And lastly (((((((((((HUGS))))))))))

Katester Enthusiast
Katester
Posted
  • Author

I was diagnosed about a month ago. I'm sort of having a hard time adjusting. I don't mind the food or anything like that. I like a lot of the gluten-free foods better! It's just hard with school and stuff. I'm the only one in my family right now. I think the rest of my family knows they need to get tested soon too. If there is gluten in the shampoo and conditioner I use, does that still affect me? I don't understand how hairspray and things like that get into my body. I still have a lot of questions about this kind of stuff. The nutritionist wasn't much help. Thank you so much! :D

JNBunnie1 Community Regular
JNBunnie1
Posted
I was diagnosed about a month ago. I'm sort of having a hard time adjusting. I don't mind the food or anything like that. I like a lot of the gluten-free foods better! It's just hard with school and stuff. I'm the only one in my family right now. I think the rest of my family knows they need to get tested soon too. If there is gluten in the shampoo and conditioner I use, does that still affect me? I don't understand how hairspray and things like that get into my body. I still have a lot of questions about this kind of stuff. The nutritionist wasn't much help. Thank you so much! :D

I've heard a lot of stories about how nutritionists aren't much help. I hope we can help.

About your hair stuff. I know my hair gets in my mouth all the time. Even if you always wear your hair up, if you spray hairsoray in the air, you will breathe it in, and it will be in the nasal drip that eventually gets swallowed. I know it doesn't seem like much, but it's still not good for you. It's more dangerous with your shampoo though, because I find it impossible to keep my suds from going down my face, and if you open your mouth just once, you can get glutened. Ask all the questions you want!

L.A. Contributor
L.A.
Posted

My parents finally got it when they asked me how often my tummy hurt and I said it was easier to tell them how often it didn't hurt...

Katester Enthusiast
Katester
Posted
  • Author

Thanks!

You guys are so helpful.

If you have any tips or anything like that let me know!

RiceGuy Collaborator
RiceGuy
Posted

If you haven't already done so, try avoiding dairy and see how you feel. That is a very common problem for many on this board, including myself. There are other common allergens to consider, and I suppose you may get better advice by simply reading through some of the threads to see if you identify with what others are saying. Things like soy, corn, peanuts, tree nuts, and nightshades are among the most problematic.

Hope you feel better soon!

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

Celiac.com Sponsor (A8-M):


confusedks Enthusiast
confusedks
Posted

I went through this at school, etc. I'm 17 and when I was in HS it was very hard at first, but I always ate healthfully anyway. I never took sandwhiches, etc. anyway so in that sense it was fine. BUT, it was very hard at parties and social gatherings because I would almost always get sick just to "fit" in. I never purposely ate gluten, but I did eat out at restaurants without talking to the waiter/waitress. I almost always got/get sick when I eat out.

Something that got my friends to come around was when they say me eating things like skittles, etc. because they realized gluten free isn't a death sentence! Slowwwwwly but surely my friends came around. Now they will even ask me where to go out to eat so I can eat (but I have too many intolerances now to really do that anyway...but the thought is what counts!)

One day not too long ago a friend called me and told me she wanted to go gluten free, but needed my help. I helped her, went shopping with her. She didn't stay on the diet, because she said it "didn't fit into her lifesytle." Well, I don't think it fits anyone's, but we do it anyway. She did tell me that she admires me because I am so strict with my diet.

So, eventually your friends will come around. Also, DON'T cheat in front of them, WHATEVER you do! They will then just think you don't take it seriously. :)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,022
    • Most Online (within 30 mins)
      7,748
    Pesto
    Newest Member
    Pesto
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.