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Negative Biopsy

ashlee.ream

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ashlee.ream Rookie
ashlee.ream
Posted

but i have all of the symptoms of celiac and a positive blood test. maybe its crohns or IBD? my mom and i both think i do have celiac disease.

the GI said i dont have celiac which doesnt make sense to me.

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maximoo Enthusiast
maximoo
Posted

Did you go back on gluten prior to the biopsy? Or were you gluten-free up till the time you were scoped?

Jai Rookie
Jai
Posted

Well, I had an "inconclusive" blood test and negative biopsy (of course this was done several months post gluten-free) We had suspicions and there was no way I could continue to eat gluten while waiting for the biospy (gotta love Canada's healthcare system!)

My mother has celiac and I had 100% the same symptoms as she had. I eliminated gluten and s...l..o..w..l..y but surely I got better. My gastro felt confident in saying I had celiac based on elimination of other diseases and family history.

Tests are not perfect! Despite my results I will NEVER eat gluten!

ashlee.ream Rookie
ashlee.ream
Posted
  • Author

i wasnt eating gluten when they did the biopsy. it makes me really sick and my bones and muscles ache. ect. my mom and i say i have celiac even though the biopsy says otherwise.

Jai Rookie
Jai
Posted

i wasnt eating gluten when they did the biopsy. it makes me really sick and my bones and muscles ache. ect. my mom and i say i have celiac even though the biopsy says otherwise.

oh well, if you weren't eating gluten, then there you go! You have to be in order for the biopsy to be accurate. And do you feel better when you stop eating gluten? Do you need more of an answer than that? I've had a top GI tell me that clinical results are worth way more! He said negative biopsy and all, he considers me celiac...

ashlee.ream Rookie
ashlee.ream
Posted
  • Author

yes i feel alot better when i dont eat gluten. thank you for the reply :)

  • 2 weeks later...
Retrotea Newbie
Retrotea
Posted

I'm not doctor, obviously, but if the blood tests are positive I'd say you have celiac. If it's literally looking at your "tract" and you haven't eaten gluten then it would be negative. And I would think regardless if your blood test was positive, no matter the GI tract test, then it doesn't matter. I'm told I'm celiac and I honestly don't have many issues aside from joint, teeth issues, vitamin deficiency, passing out once in awhile and bloating/stomach aches. I bet if I had my tract checked it wouldn't be that bad and may even be negative, etc, even when I do eat gluten.

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ashlee.ream Rookie
ashlee.ream
Posted
  • Author

thank you! :)

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      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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