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Do You Think A Biopsy Is Necessary In Canada

maribeth

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maribeth Apprentice
maribeth
Posted

i recently was diagnosed with celiac disease and have been waiting for a biopsy appt for sometime. my blood tests were positive and my osteoperosis got worse in the last year. i'm tired of waiting and have decided to start the gluten free diet-into my 2nd day. do other people feel the biopsy is necessary. do other canadians feel the biopsy should be done before the diet is started or not. have others gone on the diet without a biopsy. thanks for any input. beth.

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Michi8 Contributor
Michi8
Posted
i recently was diagnosed with celiac disease and have been waiting for a biopsy appt for sometime. my blood tests were positive and my osteoperosis got worse in the last year. i'm tired of waiting and have decided to start the gluten free diet-into my 2nd day. do other people feel the biopsy is necessary. do other canadians feel the biopsy should be done before the diet is started or not. have others gone on the diet without a biopsy. thanks for any input. beth.

You don't need a biopsy to go gluten free, but if you are intending on following through on the biopsy, it may be best to not go gluten free until after the biopsy is done. You do have the positive blood tests...you need to talk to you GI to see if there really is a need for doing the biopsy.

I'm waiting for my own biopsy at the end of November (I've been waiting since early August!) But I had negative blood tests, so I feel I need to the gastroscopy and biopsy to confirm, and to rule out any other health issues. My colonoscopy isn't happening until March! Waiting so long is a real hassle. :angry:

Michelle

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Maribeth! Welcome to the forum! There's a bunch of really great, supportive people on here that will help you navigate through the gluten-free world and be there for support. Remember, there is no such thing as a stupid question on this forum. So feel free to ask whatever you need......

In regards to biopsy, well, I for one am not a big fan of the biopsy to confirm celiac, but it certainly is a good thing to have done to rule out everything else and put your mind at ease. See, the way to look at it is this:

Picture someone's back with a patchy rash on it. Now, a doctor is behind this person with blindfolds on, and is supposed to take biopsies of this back. Basically, it would be a 50/50 hit or miss as to whether the doctor got the rash part or not, right? Well, it's the same with the damage done in the intestine. It basically is hit or miss as to whether the doctor is going to take a part from the damaged part. So when it comes to the biopsy, yes, it can confirm celiac if you see villi damage, but if it comes back negative, that doesn't confirm you don't have it, as they could have just missed the damaged part.

Where in Canada are you? I am about 1 hour outside of Toronto..... If you are in Ontario, I could tell you some good places to get some great gluten free stuff.

In regards to the taxes, it works this way. If you save EVERY receipt of the gluten-free foods that you buy, you basically can claim the difference between the price of the regular stuff as opposed to the gluten free version. i.e. regular loaf of bread - $2.50 and gluten-free loaf of bread $5.50 - then you can claim the $3.00 on your taxes. The problem being is that they base it on your total family income. So basically, because in our household both my husband and myself have an income, the amount that I totalled throughout the year of what I spent on gluten-free food was below the minimum amount (which was outrageously high, IMO!) that you were allowed to claim. So for me, it was useless, but for others, it might help them......

Hope this helps a bit. Again, welcome to the forum!

Hugs.

Karen

tarnalberry Community Regular
tarnalberry
Posted

lots of people here - canadian or not - don't have a biopsy. we've been diagnosed through a variety of means: blood tests, stool tests, dietary results, DH diagnoses, and some intestinal biopsies. some doctors think that biopsies are required, but that opinion is fading slowly, in favor of simply relying on blood tests. if you are producing antibodies to gluten, and and antibodies to your own tissue that only appear in the prescence of anti-gluten antibodies, well... it seems the answer's pretty clear.

maribeth Apprentice
maribeth
Posted
  • Author

hi michelle,

i really don't want to go thru with the biopsy but know i should just to see if there are any other problems. i'm scheduled to have a colonoscopy but again am waiting for the call. i know there's a long wait for that . i had a barium enema and stool sample done in aug and all showed ok. good luck with your tests beth.

You don't need a biopsy to go gluten free, but if you're intending on following through on the biopsy, it may be best to not go gluten free until after the biopsy is done. You do have the positive blood tests...you need to talk to you GI to see if there really is a need for doing the biopsy.

I'm waiting for my own biopsy at the end of November (I've been waiting since early August!) But I had negative blood tests, so I feel I need to the gastroscopy and biopsy to confirm, and to rule out any other health issues. My colonoscopy isn't happening until March! Waiting so long is a real hassle. :angry:

Michelle

happygirl Collaborator
happygirl
Posted

please make sure you see others responses to your other thread:

Open Original Shared Link

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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