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Newhere19
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Newhere19 Newbie
Newhere19
Posted

I recently had bloodwork done with a GI specialist and was told that I have celiac.. .but they will not confirm the diagnosis without an endoscopy and biopsy.

Due to severe trauma I cannot endure the endoscopy and they made it quite clear full sedation is not an option.

So now I have to venture forward assuming this is in fact what is causing all of my symptoms. Has anyone else here had the same experience and started the gluten free diet to see if you're really suffering from celiac? If so, how long did you commit before safely saying the results are accurate? My thought was at least three months would be necessary.

Much love to everyone ❤️ 

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trents Grand Master
trents
Posted

Welcome to the forum @Newhere19!

Yes, we have had many forum members that for one reason or another cannot go forward with the confirmation step of the endoscopy with biopsy. Usually it is because they have already been gluten free for a significant period and react so severely to gluten ingestion that they cannot undertake the gluten challenge without endangering their health. But we also have had more than a few who have severe anxiety surrounding the endoscopy itself and cannot bring themselves to go forward with it.

May I ask, what was your antibody score or scores, what was the name of the test or tests done and what were the ranges given for normal/negative vs. positive? 

What symptoms do you have? What caused you to seek out celiac testing?

And to answer your question, many on this forum have had to go forward with the gluten free diet without an official diagnosis for the reasons already stated. You should start seeing symptom improvement within weeks. But realize that achieving a truly free gluten lifestyle is more challenging than most of us realize at the outset. There is a real learning curve involved in order to achieve consistency. That is partly due to the many unexpected places gluten is tucked away in the food supply/supplements/medications and partly because of CC (Cross Contamination) issues. I will offer this primer to get you off to a good start:

 

Scott Adams Grand Master
Scott Adams
Posted

While having an official diagnosis may offer some benefits, especially in places in the UK where the government offers food subsidies, and where follow up tests can be ordered afterwards, there are also drawbacks:

 

Newhere19 Newbie
Newhere19
Posted
  • Author

Thank you both. I haven't had access to the test results but will get them and post here.

Beverage Rising Star
Beverage
Posted

I got an official diagnosis from a naturopathic doctor, based on: 1. Very high blood antibodies 2.dna test and 3. Response to gluten free diet. I'm in the United States and have had absolutely no push back ever.

My step granddaughter received an official diagnosis from an MD based on high antibodies blood test only. She's also in the U.S. and was told docs in U.S.are doing this more often now.

I'd try a different doctor if you can. 

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum, @Newhere19,

I agree with @Beverage about getting a DNA test for Celiac genetic markers and trying the gluten free diet.  

An endoscopy would be able to check for visible damage and allow biopsies to be taken to examine for microscopic damage.  

Some people have camera endoscopy.  Would this be a possibility?  

Sending encouragement.  You've found a tribe that understands.

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      By trents · Posted

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