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Very Confused....

melon-uk

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melon-uk Rookie
melon-uk
Posted

I had an appointment with a gastroenterologist yesterday in the hope of getting closer to a diagnosis (I came off gluten last july and am unwilling to touch the stuff for the sake of a blood test). I am due to have an endoscopy and a biopsy but as it's the NHS it could take a wee while.

 

The consultant I saw was of the opinion that I wasn't celiac (but had sensitivity to gluten) as I didn't have the 'classic' symptoms (but it has messed up my adrenal hormones pretty badly, thankfully well on the mend though).

 

I was wondering if there is anyone else without the 'classic' symptoms that has since been diagnosed

 

Also, is a biopsy likely to show any damage after being gluten free for so long, and lastly...

 

What is the difference between celiac disease and gluten sensitivity? This really confuses me as everything I read gives a different opinion!

 

I really appreciate any answers to the above  :)

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Chris04626 Rookie
Chris04626
Posted

Noit sure why they would do a biopsy if you havent been eating gluten. From what i have read and heard theres no point of a biopsy if your not currently eating gluten.

kareng Grand Master
kareng
Posted

There are many symptoms of Celiac. This is a link to common symptoms and has a link to the 300 symptoms of Celiac. Of course, they are all symptoms of other diseases, too.

Open Original Shared Link

Some info about non- Celiac:

Open Original Shared Link

"What’s the difference between celiac disease, gluten intolerance, non-celiac gluten sensitivity and wheat allergy?

We use “gluten intolerance” when referring to the entire category of gluten issues: celiac disease, non-celiac gluten sensitivity and wheat allergy.

Celiac disease is an inherited autoimmune disorder that affects the digestive process

of the small intestine.

“Non-celiac gluten sensitivity” (what many call “gluten intolerance”) causes the body to mount a stress response (often GI symptoms) different from the immunological response that occurs in those who have celiac disease (which most often causes intestinal tissue damage).

As with most allergies, a wheat allergy causes the immune system to respond to a food protein because it considers it dangerous to the body when it actually isn’t. This immune response is often time-limited and does not cause lasting harm to body tissues."

Open Original Shared Link

"How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."

kittty Contributor
kittty
Posted

I had an appointment with a gastroenterologist yesterday in the hope of getting closer to a diagnosis

 

Just as an FYI, even gastroenterologists aren't always very knowledgeable about celiac. When I was DX'd my doctor, who was admittedly clueless about the disease, called a gastroenterologist to find out more. He didn't know any more than she did. I had also seen gastroenterologists previously before being DX'd, and they never even suggested a food-related cause.

 

My point is - whatever the gastro tells you, take with a grain of salt and do research on your own. My doctor had years of blood test results sitting in front on her and never made a connection to celiac - it took me 5 minutes on Google to put all the pieces together.

 

Being off gluten for as long as you have means that your results will probably be negative, and you may not be given a diagnosis. My doctor diagnosed me as celiac without the tests because of how well I reacted to the diet and evidence from other blood work, but I'm not sure if the NHS is that flexible.

melon-uk Rookie
melon-uk
Posted
  • Author

Thanks for all the helpful replies all. This forum has been a real lifeline over the last 8 months or so, I really couldn't have done without it!  :rolleyes:

 

I'm seriously considering going for a gene test, i'm beginning to think it's my only option as I really can't bear eating gluten for any length of time.....

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