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Feel So Belittled


glutenfreemamax2

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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.


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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.

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    • trents
      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
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