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How long did you go undiagnosed?

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marie1122

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I had the following symptoms for 20 years:

asthma, exteme fatigue, dental issues,bloating, gas, metallic taste in my mouth , itching, rash, hot flashes, pale skin, early menopause, numbness, nausea. 

It ALL went away after I stopped eating wheat. 

No thanks to allergist or derm.

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Just fyi: you posted this as a blog, but it looks like a forum post...

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Still not officially diagnosed, but  I`m sure judging by my symptoms that I have been celiac  since childhood, am now 57 ..... I feel like Every Dr., regardless of type, has failed me.  I am now able to live a reasonable life but only because of my own research

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On 8/17/2018 at 12:26 PM, Awol cast iron stomach said:

40 years my comrade. A long 40 years.....

Do GPS have to have a license to diagnose a certain illness or desease

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I too started suffering with symptoms when I was 10 or 11, and now I'm 61.  Things got to a fever pitch at about age 34 and I started visiting the gastroenterologists' regularly.  I complained for years, had numerous upper endoscopies, but no one tested me for celiac disease until I was 58 in 2014.  By then I had developed lymphocytic colitis which nearly took me out, fibromyalgia, had frequent yeast infections, dry eye syndrome, GERD, etc. and had heart and bladder issues.  

The gluten free diet helped tremendously.  However, I started with 8 months of budesonide and welchol to stop the inflammation and horrible D.  Now I have switched to a whole food plant based diet and I feel worlds better after nearly a year of omitting meat, dairy, eggs, oils and processed foods.  

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I wasn’t diagnosed until I was 41yrs old, when I was 9 yrs old I was put into the Glasgow  Hospital they were worried I had Lukemeia. My whole life I felt unwell everyone labeled me a hypochondriac oh she’s just seeking attention!!!

Anyway so much damage done in the years pre being diagnosed, I have peripheral neuropathy, Fibromyalgia and a heap of other things wrong with me. 

A note of caution to anyone reading this be very careful not to get any kind of mosquito borne disease I was unlucky to get bitten by a mosquito six years ago in Singapore and got Chickengunya virus it turned my world upside down undescribable pain, the virus left but it has left me with pain everywhere which just doesn’t go away.

My specialist who is also a Coeliac said because my immune system was already depleted I reacted very badly to it.

Please wear mosquito repellent avoid areas where this virus and other are known.

i always wonder if I had been diagnosed as a child would I have had a better immune system, I follow my gluten free diet to the letter as it only takes a crumb of gluten and I pay for it big time and it’s never my fault usually cross contamination from some restaurants that should know better so now I rarely eat out and only a few people that I trust can cook a meal for me . 

Thank goodness science has come such a long way and today’s children can get picked out as Coeliac early in life a gluten free diet is a small price to pay to help one be a healthier person. 

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