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concernedmamma

How Necessary Is The Biopsy?

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I am trying to understand this, but perhaps a bit of my history would be helpful to you..........

Late 2009- Sister had odd GI symptoms, blood test positive for Celiac. Her dr discouraged biopsy. She had improvement with gluten-free diet

March 2010- My son had positive blood test for Celiac. History of lifetime diarrhea, bloated belly, pale, and more recent to diagnosis, starting to fail. Biopsy Positive.

August 2011- Second son positive blood test for Celiac. I requested no biopsy- Pediatrician agreed.

I do not have any symptoms (that I am aware of), but I wanted the blood work done to be sure. just found out (Friday) my blood work is also positive (Anti-transglutaminase was 98 or something, with our norms reported as less than 10.) I am working on the assumption that I have Celiac Disease. Immediately went gluten-free, assuming I would NOT do the biopsy. With such a strong family history and obviously positive blood work, I was confident that 'my' diagnosis was correct. Met with my GP today. I do not respect, nor trust him, but cannot find another one in our area. He was less than educated on Celiac, and very confused as to why I would even subject myself to a gluten-free diet if I was feeling ok and 'could eat gluten and feel fine'. He gave me the impression that to receive a formal diagnosis (and therefore a tax break-Canada), GI's would require me to have the biopsy........... ALSO....... that it could take up to a YEAR to even get in to the GI. He could not understand why I was concerned about subjecting myself to gluten for the next YEAR if I was truly Celiac. Soooooooo..............

What are the chances of having such a strong family history of Celiac, positive blood work and NOT have Celiac???

Is it worth subjecting myself to Gluten until I get into the GI?

ARgh!!!

Thanks!

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we are in Canada too, and we are debating whether to get a biopsy for my daughter, habeas all the symptoms and our to feels at the very least she is gluten intolerant, but we are unsure what to do

as you mentioned......tax break....and also would extended medical cover meds that need to be gluten free without a formal diagnosis, and would schools help us keep her safe without it

rock and a hard place

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My take here is that you have the blood work and that is all you need. You can have celiac and not have the typical digestive issues, however, that does not mean it's not doing your body harm. There are many here on this site who had very little digestive issues but what turned up after years on gluten was nerve damage. My thoughts are that it would be in your best interest to continue on the gluten-free diet, and not follow thru with going back on glutens to get the scope done. Others may think differently here.

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I can't help with the requestions regarding the tax break since I'm not in Canada, but I will say that there's a good possibly you can be gluten intolerant without having actual Celiac's Disease. Personally, I would go gluten free. There can be a lot of other symptoms you're experiencing that you don't even realize are related to the gluten. For me, when I have gluten I have Gi symptoms like most Celiac's but I really have much worse mental health issues - depression, anxiety, brain fog. It's not worth damaging your body.

Plus, if it's going to take a year to get into a Gastro doctor, I'd go ahead and go gluten free. Then about 3 months before the appointment start eating gluten again. That will give you 9 months gluten free to see if you notice a difference.

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I went through the same thinking as well....I had positive bloodwork and positive biopsy, my daughter had positive bloodwork and positive biopsy so when my son's bloodwork came back positive I wondered how there would be any possibility that it wasn't Celiac. After my son's biopsy, I've come to realize the biopsy can be rather confusing and not as black and white as one would hope it would be. I also live in Canada and my understanding of the tax break is that you need a letter from the doctor saying you have been diagnosed with Celiac disease and must eat gluten free but that some doctors (who feel strongly about the biopsy) won't give you the letter unless you have the biopsy done. My family doctor was willing to give me the letter based on bloodwork alone and she didn't insist on a biopsy (I insisted on the biopsy) I could be wrong but that is my understanding of it but I would suggest you contact your local chapter of the Canadian Celiac Association (www.celiac.ca) and ask them just to be sure.

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