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Biopsy After 3 Months Gluten Free?

Sarah1122

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Sarah1122 Newbie
Sarah1122
Posted

Hi all,

I am new to this site (and to Celiac in general) and first have to thank you all for the wonderful information and support I have found here. It really helps me feel not "so alone" during this difficult time.

On to my question: My blood work tested positive for Celiac in March - My GI wanted to do a biopsy to confirm, but my insurance company requries I pay a $500 deductable, which I could not afford at the time. My mom and sister both have celiac and now that I have been gluten free (mostly - there were a few accidents in the beginning) since April, I have no doubt that I have Celiac Disease.

However, in all my research, I found that the biopsy is the "gold standard" at confirming Celiac and have decided to have the test, both to rule out and/ or address other issues I am still having and to make it "official" in my medical record. I feel as though a specialist down the road may not take me seriously if I dont have the biopsy...

My question is - should I start to eat gluten again, as my test is in 2 weeks? I really do not want to - I am just finally starting to feel the slightest bit better and the thought of essentially poisoning myself for this test is upsetting. By the time I have the test, I will have been follow a gluten-free diet for 15 weeks, though I have been glutened a few times accidentally and gotten very sick (brain fog and depression are the worst!)

Will these gluten free weeks completely throw off the results? Or has this amount of time not allowed things to heal yet? (I was undiagnosed for almost 10 years, so I am thinking there must still be some damage there, right??)

What do you think? What has your experience been?

Any input is appreciated! Thank you!

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Skylark Collaborator
Skylark
Posted

Hi there and welcome.

All bets are off if you're gluten-free for that long before your biopsy. Eating gluten for two weeks after three months gluten-free is not likely to make a difference. I also completely agree about not poisoning yourself if your gluten symptoms are really bad.

With two first-degree relatives who are celiac and positive bloodwork I can't imagine a specialist wouldn't take you seriously. Did you come up positive for anti-endomysial? There are researchers saying people with anti-EMA maybe don't even need a biopsy because it's so specific for celiac disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

You have 2 first degree relatives with celiac and you have positive blood work. I would consider myself diagnosed if I were you. You would need to be back on gluten for about 3 months for the best chance at a positive biopsy and even then your results could be a false negative. You may also become even sicker from the challenge than you were before your blood tests and it could take longer for you to heal. IMHO you should simply skip the biopsy and save your money and health.

tarnalberry Community Regular
tarnalberry
Posted

Ditto what everyone said - you need to be eating gluten at least three months prior to testing for a realistic expectation not to get a false positive.

Tina B Apprentice
Tina B
Posted

Hi there and welcome.

All bets are off if you're gluten-free for that long before your biopsy. Eating gluten for two weeks after three months gluten-free is not likely to make a difference. I also completely agree about not poisoning yourself if your gluten symptoms are really bad.

With two first-degree relatives who are celiac and positive bloodwork I can't imagine a specialist wouldn't take you seriously. Did you come up positive for anti-endomysial? There are researchers saying people with anti-EMA maybe don't even need a biopsy because it's so specific for celiac disease.

I would just stick with the diet and forget the biopsy. What would it tell you that you don't already know. Of course the doc wants you to do it. he gets paid for it. You already know the bloodwork is positive and you have positive family members. By yourself a nice gift with the $500

Sarah1122 Newbie
Sarah1122
Posted
  • Author

Thank you all for your responses - and for confirming my feelings about starting to eat gluten now after so long without it. I just dont even think I could do it if I had to! Ugh! As much as I loved pizza before my diagnosis, if I was told I had to eat a slice right now, I would probably cry (or gag!) the whole way through it!

I am having a full physical tomorrow, running a bunch of tests to determine vitamin levels, anti-bodies, hormones, bone-density, and such, just to see where my health is right now. (many tests I learned about on this site, so again - thank you very much!) Going undiagnosed for about 12 years scares me... thinking of all the damage that could have been done. Doctors kept telling me I was "stressed" or "too young to be this tired, that it would pass." (I am 34 now) No one would listen! I had ultrasounds on my uterus because they thought the swelling was a tumor

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