Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
luvs2eat
Posted

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
IrishHeart
Posted

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
IrishHeart
Posted

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
chai
Posted

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
IrishHeart
Posted

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
Di2011
Posted

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.

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


  • Member Statistics

    • Total Members
      130,326
    • Most Online (within 30 mins)
      7,748
    Diane Nicholetts
    Newest Member
    Diane Nicholetts
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • NoGlutenCooties
      gluten-free in Wilmington, DE

      By NoGlutenCooties · Posted

      For anyone looking for a great place to eat near Wilmington, DE, I did not find anyplace in Wilmington that looked like they could do safe gluten free. I was also there on a Sunday and most places are closed on the weekends. However, I found a really great place in Newark, DE - just 20min away.  It's Ted's Montana Bar and Grill and it was absolutely amazing! They have a great gluten free menu and they really understand about keeping things from being cross contaminated. They had the best Bison burgers and hand-cut fries.  Yes, in a separate frier, of course. My friend got the gluten free bun and she said it was really good. Ted's Montana Bar and Grill is also a chain, with several locations across the country.  If you happen to be near one, I highly recommend them.
    • Mari
      Ocd making gluten fears unmanageable. Need advice

      By Mari · Posted

      I havesome of the replies to your post(which by the way is a gread piece of writing) and think that it will take lots of time and reading to decide what you are going to do. I would like to give you some practical suggestions. Your anxieties and OCD are a perfectly natural response when your body is sending signals that you have physical problems. The body does not use words it uses biochemistry and electric interactions. Celiac disease is not a killer disease so you are not going to die in the near future if you get glutened.  It can be a disabling problem unless you stay gluten free. For OCD attacks I have used spearmint or peppermint teas to relax. I also sitorlay down , relax as much as possible and review what I have been eating for the last few days and can usually identify that I have been eating too much of something and not enough of other foods that would balance my body. My body may have become too acid when it needs to be slightly alkaline. For me this means eating more vegetables and less starches and proteins. There are some websites that will list acid forming foods and alkaline forming food and many foods that are in between. Just admit that you are anxious about gluten being present in foods and anything that is used to prepare foods or even in your environment. When you eat anything that makes you anxious take a capsule of an anti-gliadin enzyme. I use a brand called GliadinX. It works in the stomach and will break down small amounts of gluten. Look up online the amount of plain water your body height and weight needs every day. Two years ago I was 5' 4" and weighed 100 lbs and needed 48 oz. every day.  Even if you can't drink the full amount if you just drink more water you will notice some improvement in your digestive system.  That's enough for tonight and it's way past my bedtime. Don't hesitate to ask more question or ask for more information.       
    • Scott Adams
      Canker sores

      By Scott Adams · Posted

      Canker sores can definitely be frustrating, especially when you're already managing a strict gluten-free lifestyle and have been diagnosed with celiac disease for so long. While these painful mouth ulcers aren’t exclusive to celiac disease, they can be linked to nutritional deficiencies—particularly of iron, folate, or vitamin B12 (as @trents mentioned )—which are common in people with celiac, even those who are very careful with their diet. Ongoing fatigue and aches might also suggest that your body isn’t fully absorbing nutrients or that there’s some underlying inflammation. It could be helpful to get bloodwork done to check for these deficiencies, and possibly even a full nutritional panel. Sometimes, new sensitivities or hidden sources of gluten or additives like sodium lauryl sulfate (common in toothpaste) can trigger symptoms like canker sores too. Since your reactions are so severe and you're highly vigilant, it might also be worth considering whether any other autoimmune conditions could be involved, as they can develop over time and overlap with celiac. Consulting with your doctor or a celiac-informed dietitian may help pinpoint the cause and bring relief.
    • knitty kitty
      Ocd making gluten fears unmanageable. Need advice

      By knitty kitty · Posted

      @Dora77, You shouldn't worry about getting glutened through your skin.  You would have to touch a gluten infested doorknob and then put your hand in your mouth.   I'd be more concerned with your mom's heating up gluten bread in the oven and boiling gluten noodles.  These methods cause particles of gluten to become airborne which would then enter your nose and be swallowed, going into your digestive tract.  I have to avoid the bakery aisle at the grocery store for this reason.  An M95 mask helps. If you get nutritional deficiencies corrected, your immune system will calm down and be less reactive to gluten expose.  Vitamin D helps regulate the immune system.  Thiamine and Niacin help make digestive enzymes which would help digest any accidental gluten exposure.  Thiamine helps Mast cells not to release histamine, an inflammatory agent released as part of the reaction to gluten, and also a neurotransmitter that causes alertness and anxiety, and the flight or fight response.  Pyridoxine will help improve the OCD.  Remember your brain is part of the body.  Vitamin deficiencies affect your brain and mental health as well as the rest of your body.  
    • Jacki Espo
      Canker sores

      By Jacki Espo · Posted

      I do not have evidence other than anecdotal but I am certain when I have gotten these it's the result of eating gluten (back when I did).  I don't get them now that I don't eat gluten. 
×
×
  • Create New...