2nd Biospy?

2nd Biospy? celiac disease testing Rate Topic:

#1 L13

New Community Member

Group: Members
Posts: 9
Joined: 04-November 09

Posted 10 November 2009 - 03:57 AM

I recently had a blood panel done (Sept 09) and it was Very Positive. Friday I had my biopsy. However, my doctor (on our first visit and b/f my biopsy) said that he likes to do 2 biopsies. He does one to confirm and then another in 5-6 months to make sure my body is healing. I have never heard that and don't like the idea of that. I am very disappointed by that b/c it is invasive and a simple blood panel will test negative if I am doing well with my diet.
I may have to switch doctors - I will if I have to but I want to have him a second chance. Maybe I read him wrong...

#2 ravenwoodglass

Advanced Community Member

Group: Advanced Members
Posts: 12,491
Joined: 17-April 04

Posted 10 November 2009 - 04:23 AM

That really is not uncommon. If your feeling better and symptoms have resolved then it is up to you whether you want another scope. It is your choice whether to have one done or not. Also be aware that there can be false negatives with biopsy so as soon as the biopsy is done start the diet. Your body may give you the answer before the biopsy results come in. Do not start the diet until all testing is finished. Hopefully your biopsy is scheduled soon. If they do give you a biopsy date that is not real close you can ask to be put on a cancelation list if your schedule lets you drop everything on short notice.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom

Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Gemini

Advanced Community Member

Group: Advanced Members
Posts: 1,674
Joined: 25-August 06

Posted 10 November 2009 - 11:14 AM

L13, on Nov 10 2009, 06:57 AM, said:

I always have to laugh out loud when I hear this. My doctor, who I really like and respect, said the same thing. I was about 2 years into the gluten-free diet, was doing exceptionally well and by then, was pretty much asymptomatic for anything. I looked at her as she tried to convince me to have a scope done to see if I was healing well and had to suppress a laugh. Don't you think the fact that I am doing so well and have gained weight is a sure fire indicator that I am healing well?
HELLOOOOOOOO! She smiled and laughed herself. I blame it on the AMA training they get....the patient is too stupid to figure that out for themselves!

My plan was to see how well I did on the diet and if my issues were still there or not completely resolved, then I would be scoped. I didn't have the scope and am perfectly comfortable with my decision. My blood work also backed up the fact of my recovery so it was a no-brainer for me.

If you do not want to be scoped for good reasons, then be firm with him. If he doesn't like your decision, then you may have to find another doctor.

#4 cat3883

Advanced Community Member

Group: Advanced Members
Posts: 106
Joined: 10-September 08

Posted 10 November 2009 - 12:48 PM

My gastro says he only does one biopsy. The exception to that would be if my bloodwork would come back high. He does check my blood every 6 months. By the way I got my tgg down to 4 in 1 year. 0-19 is normal.

#5 jkr

Advanced Community Member

Group: Advanced Members
Posts: 78
Joined: 05-April 09

Posted 10 November 2009 - 03:48 PM

My GI didn't want to do a repeat biopsy. I don't feel the need to have another one anyway. He didn't even tell me to come back for repeat blood tests which I think I should have.

I am going to call him in a couple of months (I had the endoscopy in July) and ask him when he wants me to have another blood test. I had forgotten to ask him about this when I was there in August.