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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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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
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      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
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