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

Feel So Belittled


glutenfreemamax2

Recommended Posts

luvs2eat Collaborator

While my youngest daughter tested (by endoscopy) positive for celiac, her symptoms were so extreme they began testing her for things like interstitial cystitis and refractory celiac. Those tests were negative, so her extreme symptoms were simply ignored and she found doctors and nurses almost hostile to her pleas for answers and help. She tells me she learned a really good lesson in all that. She's been able to find her own answers (like avoiding all dairy and citrus and slowly bringing very low oxylate veggies back into her diet) and her gut is slowly healing.

It doesn't matter if everyone else thinks you're nuts. If YOU feel better eating gluten free... tell them to go suck an egg.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

No one can make your feel inferior or belittled without your consent. Stop giving them your consent. ;)

Everyone that posted has given you excellent advice, but there is one more thing I would add. If you get tired enough of all this bullying and "know it all " BS that is WRONG, just smile and say...."Mind your own business. I'm good, thanks!"

For starters, taking daily doses of laxatives of stool softeners actually prevents your colon from doing the job it is designed to do! Drinking lots of WATER will irrigate you and keep you moving smoothly.

Take probiotics.

Stay off gluten.

Your bowel issues, etc. will likely clear up.

Their idea of "helping" you is just symptom treating. IBS is a collection of symptoms, not a diagnosis or a resolution of symptoms. I was told I had that for 12 years and given drugs to help. They did NOT. Things just got worse until I was very, very ill with celiac.

And I would say to those who say you are "making things up" ---ask this:

"Why on earth would I make this up? What would be my motive?"

See what they say to that ;) .

You're in charge of your own health, hon. Listen to your own voice and do what helps you and your child feel best! Listening to the medical "know-it-alls" for most of my life nearly killed me.

Best wishes!

IrishHeart Veteran

Wow! Really? I didn't know this and it makes sense. I keep telling myself that my family is being effected by gluten and they are not even aware.....gallbladder surgery has been very popular in my family. Thanks for sharing that.

Gall bladder disease was one of the first real problems I had. Even removal of that 27 years ago did not resolve things. It just got worse....No ONE in my family still has a gall bladder--not my Mom, sister, aunts, niece, or several cousins---all gone. Coincidence? Hardly.

  • 3 weeks later...
chai Newbie

I was first diagnosed with gluten, dairy and animal protein intolerance when I was 1 (i think) when I lived with my mother. When I went to live with my dad when I was 5 i was allowed to eat everything I couldn't. My diet stayed like that until i was 17 when I spent over 1 year sick with lymph node swelling and other unpleasant stuff. I was diagnosed 3 years ago but people in my family still don't believe it. They think it was a childhood allergy and I respond by reminding them of all the behavioral and physical problems I had.

Last year on my birthday, which is near christmas, I had a shouting match with my brother who did came out and said that I had made up my allergy. I took a bus home that very night (to my apt in university) and spent my birthday and chrismas alone. it was miserable but I figured that i would rather be alone then to be with someone who doesn't notice how much better I was.

I think you glutenfreemamax2 should do something similar. Stand up to the people who can't see how happy and healthy you are when you get rid of gluten. I still have problems with people in my family but by brother believes me now, and i think its because i stood up him.

IrishHeart Veteran

I was first diagnosed with gluten, dairy and animal protein intolerance when I was 1 (i think) when I lived with my mother. When I went to live with my dad when I was 5 i was allowed to eat everything I couldn't. My diet stayed like that until i was 17 when I spent over 1 year sick with lymph node swelling and other unpleasant stuff. I was diagnosed 3 years ago but people in my family still don't believe it. They think it was a childhood allergy and I respond by reminding them of all the behavioral and physical problems I had.

Last year on my birthday, which is near christmas, I had a shouting match with my brother who did came out and said that I had made up my allergy. I took a bus home that very night (to my apt in university) and spent my birthday and chrismas alone. it was miserable but I figured that i would rather be alone then to be with someone who doesn't notice how much better I was.

I think you glutenfreemamax2 should do something similar. Stand up to the people who can't see how happy and healthy you are when you get rid of gluten. I still have problems with people in my family but by brother believes me now, and i think its because i stood up him.

Good for you!! ;) I will never understand the people who think anyone would "make up" being ill. How do you "make up" weight loss, lost muscle mass, diarrhea, hair loss, anemia?? :blink:

It is good you are gluten-free now and thriving well! Many older people on this board were told as children that "they would outgrow it" --- and they have suffered all their lives as a result.

You are one wise kiddo! Never let anyone treat you with disrespect. I had a few people desert me when I became seriously ill. They did not stick by me when things got bad and now that I am recovering, they are "coming around"...not sure I trust that kind of "loyalty". :rolleyes:

Stay well! ;) & Happy upcoming Birthday!!

Di2011 Enthusiast

My god almighty there is a PHD study worthy of the psychological implications of this poison. Why are so many friends and family so anti this problem. Why do people think that gluten free means no carbs and no fibre????????????????????????????????????????????????????????????????????????????????????????

The wheat industry will hate me.

Archived

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

  • 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. - Jmartes71 posted a topic in Introduce Yourself / Share Stuff
      0

      Not validated

    2. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      4

      New issue

    3. - Jmartes71 replied to chrish42's topic in Doctors
      3

      Doctors and Celiac.com

    4. - RMJ replied to Xravith's topic in Introduce Yourself / Share Stuff
      1

      Do Gluten Enzymes actually work?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,185
    • Most Online (within 30 mins)
      7,748

    JudahS
    Newest Member
    JudahS
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      After waisted time of new care team, yet again EXHAUSTED saw new gi today in Modesto, though all my ailments im not getting any kind of concern of me being celiac and sentive to just about everything since menopause. Dr daid why don't I go see you guys because my blood shows zero for celiac. I told him im glutenfree since 1994 by colonoscopy with biopsy positive celiac sprue by GI.Its RIDICULOUS when im bringing in material from this site of knowledge as well as the autoimmune institute,and  there's zero interest on their part.Medical IS causing me depression.Im view as a disability chaser, IM STILL RECOVERING from being a bus driver that im still healing and having more issues, now I may have multiple sclerosis or meningioma. Ive reached out, wrote letters, NOT feeling well. This is inhumane. 
    • Jmartes71
      I was taking medicine for sibo but it was not agreeing with my stomach at all.Was on gabapentin but it amps me up.I was taking in morning because it wasn't allowing me to sleep.This has always been an issue with medicine and me.Even going to dentist, the good shot that numbs you once, I can't take because it makes my heart beat fast and I  get the shakes.I have to take the crappy stuff and get injected always more than 4 times always.Its infuriating 
    • Jmartes71
      I showed one doctor I went to once because completely clueless of celiac disease and yes that one was connected to a well known hospital and she said oh thats just a bunch of people that think they are celiac coming together. I said um no they have doctors and knowledge behind what is being written. So bay area is Downplaying this site! SADLY 
    • RMJ
      If you successfully digest gluten with enzyme supplements so it won’t give you side effects, your challenge won’t be worthwhile because the digested fragments of gluten also won’t stimulate antibody production or cause intestinal damage.  
    • FannyRD
      Thanks for the resource! I will check it out!
×
×
  • 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.