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Anybody Opt Out Of Biopsy?

danaf617

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danaf617 Explorer
danaf617
Posted

To make a long story short, I've been sick daily for 7 months. GI says post-infectious IBS. Celiac panel negative, colonoscopy looked good. Enterolab test shows positive for antibodies. When I brought it to the GI, he suggested we do the endoscopy before I go gluten-free. I agreed, but I'm still 3 weeks out from my appointment for the biopsy and I'm increasingly miserable and I just want to feel better NOW. I'm thinking of canceling the procedure and just doing the strict trial gluten-free diet. Does it really matter if I get the biopsy? As someone pointed out (Skylark, I think) my chance for Celiac look pretty low according to my Enterolab results (only positive for antibodies and double copy of gene for gluten sensitivity, not carrying either major celiac-associated gene.)

My husband has asked me about it and says "If you are going to try gluten-free either way, why even put yourself through another test?"

Gluten intolerant, gluten sensitive, celiac... all of it means gluten free for life, right? At this point I don't care what I or anybody else calls it. I just want to try and see if cutting out the gluten makes me feel better. I am so sick of being so sick. :( I'm crying just typing it because I have felt miserable for so long now and it's just worn me down.

Am I foolish for not just waiting and getting the biopsy?

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RiceGuy Collaborator
RiceGuy
Posted

It is not foolish to skip the biopsy and go gluten-free now, if that's what you want to do. As long as you are sure that you won't start second-guessing your decision later on. I and others haven't had any tests at all. Going gluten-free made a world of difference, and I don't care what any tests might say. But that's me. Not everyone feels they can stick to the diet 100% without an "official" diagnosis. It is really up to you.

I suppose you could try a day or two gluten-free, just to see if you notice anything. Some people get partial relief that soon, but generally, more time is required. A full recovery is also not expected that soon, since the antibodies can hang around for up to two weeks or so after the last exposure to gluten, and the intestines don't heal overnight. However, once you start feeling better, you may not want to touch gluten ever again, and the biopsy might become out of reach no matter how much you may later decide you'd like to have it.

Skylark Collaborator
Skylark
Posted

I'm not formally diagnosed. I didn't even want to go back to eating gluten for the blood panel.

RiceGuy said it beautifully. If you're not worried about second-guessing yourself if the diet works, there is really no need for the biopsy. Other GI problems can be picked up whether or not you're on the gluten-free diet, so you're not risking missing a different diagnosis.

IngridBeth Apprentice
IngridBeth
Posted

I am very new to this - gluten free for six days and awaiting blood test results - but I will NOT eat gluten again for a biopsy. My body does not like gluten - whether it's a sensitivity, allergy, Celiac, etc., I do not know and while it would be nice to have an answer, you could not pay me to go back to gluten. So, I certainly understand and don't think it's foolish! Again I'm very new to this but it's reassuring to know you are not alone!

danaf617 Explorer
danaf617
Posted
  • Author

Thank you for your replies. :)

I'm not worried about cheating on the diet if I do it and symptoms resolve. If I can feel like my normal self again, I'll never touch gluten as long as I live. These last 7 months have been horrible. I can count on one hand the number of days that I wasn't in pain. My life has almost stopped, I lay around and barely leave the house. Luckily, I don't work cause I can't imagine having to perform a job like this. I stay at home with my 2 small kids and I just feel so badly that most of our activities have stopped because Mommy doesn't feel good every day. :(

I guess I will take the rest of today and think about it. I'm leaning towards not doing the biopsy though.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I did not have any testing--I self diagnosed with the diet. One reason why you may want to get it is if you think you will need positive test results to convince family members to take you seriously. Can you call the doctor that is supposed to do your endoscopy and ask to get put on a waiting list for any cancelations? Perhaps they can get you in sooner.

larry mac Enthusiast
larry mac
Posted

I can only speak for myself, but I'm absolutely certain that if I had not been positively diagnosed via endoscopy and biopsies, that I would cheat on the diet.

And why wouldn't I? First off, it wouldn't be cheating, because I would not be on a strict gluten-free diet if all I had was a gluten intolerance. There would be no long term damage to my small intestine. No worry about developing cancer, or the inability to absorb nutrients, and all the repercussions that causes. A gluten intolerance does not require a strict gluten-free diet for life. It is not an auto-immune disease. It may only require say a 90% gluten-free diet, or something similar.

There is simply no way I would adhere to a strict gluten free diet for life unless I had been absolutely diagnosed with Celiac Disease.

best regards, lm

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danaf617 Explorer
danaf617
Posted
  • Author

I canceled it.

I am just really, really eager to try and see if I'll feel better gluten-free. If I do, I'm 100% okay calling myself gluten intolerant and avoiding the stuff like the plague.

And maybe it's luck or the fact that my husband and I speak up if needed, but our family rarely gives us problems with anything. Nobody can force me to eat or not eat something and if they want to argue with me, it will fall on deaf ears. And the last thing anyone would do is intentionally try to gluten me like I read on here :o (which is CRAZY, btw. who does that?) because they run the risk of not having us in their lives anymore. My husband is black & white with things, there are never shades of gray. He just wouldn't deal with someone in his family trying to harm me. (My family lives 1,800 mi away and I know they wouldn't argue with me or question me.)

Thanks again for your replies! :)

Skylark Collaborator
Skylark
Posted

Good luck! I really hope the diet works and you start feeling better.

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