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. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      14

      Related issues

    2. - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      2

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

    3. - Theresa2407 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Books about celiac

    4. - Known1 replied to Aya77's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Books about celiac

    5. - knitty kitty replied to Colleen H's topic in Coping with Celiac Disease
      3

      Barilla gluten free pasta

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

    • Total Members
      133,471
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Did they ever tell you specifically which vitamins would interfere with which tests? Fermented pickles source of thiamine  and other B-vitamins, The fermentation process with lactic acid bacteria increases the nutrient value.   Colonies of beneficial bacteria can help crowd out the the bad SIBO. Have you had the rash biopsied for Dermatitus Herpetiformus?  Atopic Dermatitis and dermatitis herpetiformis share symtoms and atopic dermatitis patients have higher risk of dermatitis herpetiformis.  dermatitis herpetiformis is a symptom of Celiac diagnosis. When I had the carotid artery stent, the hospital put down "wheat allergy" for the food service.  I guess allergy puts the fear of god in them more than the misunderstood Celiac Disease.  Whatever keeps me alive in this world.   
    • Theresa2407
      You are correct.  Same place.  I have used their site for so long and have it bookmarked.  Still living in past.  Our support group was affiliated with them.
    • Known1
      Hmm, I think you mean the Gluten Intolerance Group®?  Their website is not gig.net.  Maybe it was at one point?  I am new to all of this, but did find their website here:  https://gluten.org/ Kind Regards, Known1
    • knitty kitty
      @Scott Adams, You're right about corn and wheat not sharing similarities in the 33-mer peptide segment of gluten.  Corn has a completely different peptide that causes an autoimmune reaction because it attaches to HLA-DQ8.  Casein in dairy shares with wheat similarities in the33-mer peptide chain. Sorry about the oversimplification.  Maize Prolamins Could Induce a Gluten-Like Cellular Immune Response in Some Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC3820067/
    • Scott Adams
      I just want to mention that corn and wheat do both contain storage proteins (corn has zein, wheat has gliadin and other gluten proteins), and there are some small similarities in certain amino acid sequences. However, those similarities are not considered medically equivalent, and corn proteins do not trigger the autoimmune response of celiac disease in the vast majority of people with celiac. Celiac disease specifically involves an immune reaction to gluten peptides found in wheat, barley, and rye. Corn is classified as gluten-free because its proteins do not activate that same immune pathway in most individuals. Although corn intolerance is very real, the explanation about the proteins being the same is oversimplified to the point where it's not accurate.
×
×
  • 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.