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. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      21

      Shingles - Could It Be Related to Gluten/ Celiac

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

      Blood Test for Celiac wheat type matters?

    3. - cristiana replied to Ginger38's topic in Related Issues & Disorders
      21

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - GlutenFreeChef posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Blood Test for Celiac wheat type matters?

    5. - Scott Adams commented on Scott Adams's article in Diagnosis, Testing & Treatment
      2

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

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

    • Total Members
      133,079
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Amen! I'm already bothering my doctor about getting an updated vaccine!
    • Scott Adams
      The type of wheat does not matter for the test--all wheat contains gluten. You need to eat lots of wheat daily for 6-8 weeks before a blood test. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • cristiana
      Sorry... I accepted it!  I don't want shingles EVER again! 
    • GlutenFreeChef
      I finally am seeing a GI specialist after being gluten free for over 10 years. When I turned 30 an allergy panel stated that I was allergic to wheat, barley, rye, oats, peanuts, soy, and crab/lobster. A friend who worked at a pharmacy said my results looked just like hers and that I was probably celiac or severely gluten sensitive, so I stopped eating gluten and everything else on my list. I felt better. Since November of 2024 I've been having issues that looked like thyroid, but could be EoE in combination with perimenopause and went off of dairy as well, which provided relief. While in Europe in November I decided to try eating wheat because I kept hearing rumors that I may not react to their wheat, and I didn't. I was so glad that now I'm importing it to make my own breads. My Homeopathic doctor said it was probably the glyphosates and pesticides that I am allergic too or reacting too, not the gluten. The GI wants to retest me for celiac and told me that I would need to switch back to American wheat products for the test to come out positive otherwise I may test negative since European wheat is different. This makes no sense to me. Gluten is gluten and is in the flour there as well as here. Please help, I don't want to ingest the pesticides and glyphosates for this test as I get severe migraines, bloating and joint pain when I do eat American wheat products. That is how I know I've had cross-contamination at restaurants. Does the type of wheat really matter???? I am so conflicted with this. The GI was getting irritated with me insisting that if gluten was really the issue that it would still show up regardless of where the wheat came from.
    • Scott Adams
      Speaking from experience, and as someone who was taking zinc in my multivitamins at the time of my outbreak, I would not rely on zinc or other supplements to prevent a shingles outbreak. That is what the new, extremely effective, 2 shot shingles vaccine is for, and this vaccine is very effective at preventing outbreaks. In my case I've not had shingles symptoms since I had the vaccine, which was over 10 years ago. 
×
×
  • 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.