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Pondering Skipping Biopsy...

glutenfreejd

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glutenfreejd Newbie
glutenfreejd
Posted

Hi everyone, I'm new to the forum. A few months ago I had a positive blood test for celiac and was referred to a specialist for a confirmation biopsy. In the meantime I went gluten free as my symptoms had become so bad I was having difficulty working. The other day I got a call back from the clinic with my appointment date, but now I'm not sure I want to do it as I would have to start eating gluten again for it to be accurate. Since I've been dating gluten free I've noticed I've become even more sensitive, if I accidentally eat something a bit contaminated I have a pretty strong reaction. Is there any benefi to the biopsy that would compel me to go through this process I imagine to be so horrible? Thanks:)

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Katrala Contributor
Katrala
Posted

Most doctors will tell you to not go gluten-free until the biopsy.

The good thing about the biopsy is that you'll have a baseline and any other problems can be discovered.

Also, you'll have a 100% diagnosis.

If you're OK with not having an official diagnosis (you may find a doctor who will diagnosis without, though,) then go ahead and skip it.

From personal experience, I was glad I had it. But there are many people here who didn't and are still happy with their choice.

MitziG Enthusiast
MitziG
Posted

Dr Alex Fasano is considered THE leading expert on Celiac Disease. He recently stated this in Gluten Free Living Magazine:

"I was the one who said the gold standard was the biopsy. Now

I am saying I was wrong.

The blood tests are extremely accurate at showing a positive Celiac. False negatives- very common. False-positive? nope.

You have Celiac Disease. You can have a biopsy, but, since you have been gluten free for awhile, even if you go back on it for weeks, or months...there may not be enough damage to show positive in a biopsy.

They may do the biopsy, and not take enough samples, or not take them from the right spots, and miss the damage. Celiac is often patchy.

Or they may biopsy damaged areas, and the lab tech who reads the samples may not be experienced, and may miss it.

So...if you get a negative biopsy- what will you do? Probably start questioning yourself. Doctors cant see beyond lab results generally, and they will most certainly dismiss it, and say all of your problems are not from Celiac, and write you a rx for antidepressants.

That said, I had the biopsy, and it was positive, and I needed that confirmation to resolve to stick with the diet. But I also had not been gluten free when I had it.

Not saying you shouldn't do it...but be prepared for the very real likelihood that it will deny what is most definitely true.

Lisa Mentor
Lisa
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

MitziG Enthusiast
MitziG
Posted

Often times, a biopsy can find additional issues, which otherwise might go unresolved. And, with digestive concerns for a period of time, a biopsy can look for the level of damage.

I'm certain you will get opinions from either directions. Take it all in and make the choice you are most comfortable. :)

This is a very valid point. I am not against biopsy, by any means. I just worry that people feel they aren't a "real celiac" without that dang biopsy report!

luvs2eat Collaborator
luvs2eat
Posted

Apparently my blood test was SO positive that my doctor told me biopsy wasn't necessary! I ended up having one several years later for heartburn/GERD issues and there were celiac indications in there, but as it turned out, the biopsy really wasn't necessary. The blood tests told me what I needed to know... NO MORE GLUTEN FOR ME!!

glutenfreejd Newbie
glutenfreejd
Posted
  • Author

Thanks everyone, that was really helpful. No test for me!! I don't feel like a slip of paper will make me feel any better. I've been feeling so great, I don't want to mess with it. Thanks again!!

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Mom-of-Two Contributor
Mom-of-Two
Posted

My bloodwork was also super positive, I see the GI this Thursday and am also thinking I may not do a biopsy. If you are feeling better, I would hate to see you reintroduce gluten :( sounds like you have your answer!

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
    • HAUS
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By HAUS · Posted

      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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