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Feel So Belittled
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31 posts in this topic

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.

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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!

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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.

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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.

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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!!

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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.

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    • Welcome!   I am confused.  Did you have a negative celiac blood test or a negative biopsy (taken via endoscopy)?
    • In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them. Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling. Hang in there it will get better.
    • You are sick.  Depression and anxiety are symtoms of celiac disease (and many other illnesses).  It is hard now to look forward and imagine a great life, but it is possible.  I think you are already in the thick of the grieving process right now.  Reaching out to this forum can be very healing emotional (it is not just all common sense advice about gluten-free food!).  I did not say not to exercise, but to do it gently.  This is not the time to train for a marathon or triathlon!   The SCD Lifestyle site....it is all about the money.  Seriously.  They are selling a book. 
    • They are big on selling books -. They try to spam a lot forums and FB groups. why can't you eat nuts, nut flours, quinoa, hummus and beans? I think I missed that. Those are a good source of protein.  If you can't digest lactose look for a lactose free cheese - like one made from yogurt. at first,I thought life was over.  But with a few years of experience, I have found it isn't that big of a deal. It helps to have an attitude of "I am not here for the food.  I am here for the wine ( or the company . ). Also helps to not care what people think - "I don't care if you think it's odd that I brought my own lunch to the funeral luncheon. "( And it helps that my lunch looks better than theirs lol.)
    • Gracey, It am a mother and I am going to give you some  valuable advice.  You need to keep and document everything related to your health.  Every lab test result, notes from your doctor's visits, etc.  Why?  Because only you are your best health advocate (except for your mom).  Doctors come and go, but it is up to you to manage your health.   When I changed insurance and doctors, I had copies of all my medical records in hand.  My new PCP was impressed.  There was no doubt that I had celiac disease, fractures, Hashimoto's and diabetes, anemia, etc.  I had physical proof.  As an result, she was quick to refer me to a new GI  and order tests to measure my progress  (e.g bone scans).  My family health history chart helped not just me, but other family members.   So, find out if biopsies were taken during your endoscopy.  Get the pathologist's report.  See if your doctor checked for other issues besides celiac disease.   Hugs!  
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