Biopsy Or Not?

[Rachel--24]

I gave my doctor my Enterolab results today and he accepts them as a diagnosis and was very apologetic for all I've gone through the past few years. Apparantly I'm the first patient he's ever had with this so he's wanting to do everything right. He was wanting me to get a biopsy but isn't this kinda useless since I don't have the Celiac gene? Also I've been mostly gluten-free for almost 4 months now...except for supplements and non-food sources. I think he was mostly concerned cuz I had a positive ttg but wouldn't that only indicate damage in someone with celiac disease? Anyways I'm more concerned about the malabsorption then anything else....Is there any point in having a biopsy done now? If anything I'd only want to have an endoscopy or colonoscopy done just to make sure nothing else is going on but I would think the chances of a positive biopsy would probably be slim to none.

[Carriefaith]

I think he was mostly concerned cuz I had a positive ttg but wouldn't that only indicate damage in someone with celiac disease?

The tissue transglutamase test is highly specific for celiac disease, so if you're results were positive than you would most likely have celiac disease. If you have been mostly gluten-free for 4 months than a biopsy could come back false negative. You would have to go back on gluten for a few months if you wanted to damage the villi, but I don't think this is necessary if other tests have been positive. Some doctors, like mine do think it is necessary and I had to knowingly eat gluten for about 2 months. The biopsy does 100% prove that you have celiac disease if it is positive that is why many doctors want it done.

[KaitiUSA]

I personally would not bother with a biopsy. It would be useless at this point since you have been gluten free for so long. You would have to get back on gluten for 3 months.

tTG is indicative of damage in the intestines.

[Rachel--24]

The tissue transglutamase test is highly specific for celiac disease, so if you're results were positive than you would most likely have celiac disease.

<{POST_SNAPBACK}>

I don't have the main gene for celiac disease so I'm thinking there can't be visible damage even if I were still eating gluten. There is no way I'm going back on gluten to find out for sure and my doctor doesnt want me to do that either since I was in very bad shape before I started this diet. He just wants me to do the biopsy anyway....I'm still kind of in the dark about the sensitivity vs. Celiac thing. I think if I had the Celiac gene I'd do the biopsy but since I don't I sorta think it would be useless. I'm not normally scared of tests but that ones seems a little scary to me.

[Carriefaith]

I guess this a decision that only you and your doctor can make. Is there any way that the gene test was not accurate? Also, I believe that I have heard that a small percentage of people can have celiac without the gene, but I could be wrong (someone correct me on this if I am wrong).

I'm not normally scared of tests but that ones seems a little scary to me.

It's not that bad, the colonoscopy is WAY worse in my opinion, give me an endoscopy any day! I was awake for both

[Rachel--24]

It's not that bad, the colonoscopy is WAY worse in my opinion, give me an endoscopy any day! I was awake for both 

<{POST_SNAPBACK}>

Wow...I thought the endoscopy was painful if they don't sedate you. I wouldn't try it awake for sure

[tarnalberry]

I don't have the main gene for celiac disease so I'm thinking there can't be visible damage even if I were still eating gluten. There is no way I'm going back on gluten to find out for sure and my doctor doesnt want me to do that either since I was in very bad shape before I started this diet. He just wants me to do the biopsy anyway....I'm still kind of in the dark about the sensitivity vs. Celiac thing. I think if I had the Celiac gene I'd do the biopsy but since I don't I sorta think it would be useless. I'm not normally scared of tests but that ones seems a little scary to me. 

<{POST_SNAPBACK}>

You don't have the *main* celiac gene, but the genes that have been identified to correlate to celiac so far only cover 90-95% of cases, NOT 100%.

[KaitiUSA]

Is there any way that the gene test was not accurate?

Yes, I have heard of that before. Doesn't usually happen but I believe that gluten intolerance can turn into celiac even without the gene. That would make sense too.

[Carriefaith]

Wow...I thought the endoscopy was painful if they don't sedate you. I wouldn't try it awake for sure

I was partially sedated for both, but I was awake and fully aware of everything. Sedation was an option for the endoscopy, some people do it with no sedation at all.

[Rachel--24]

Thanks everyone,

I guess I'll just wait and see what the GI says. Believe it or not with all I've gone through the last few years I saw every specialist (more than once) except the GI doc. He was the LAST specialist I was sent to and only cuz I demanded it since I had lost so much weight and wasnt digesting my food. I saw him in April and all he did was send me for an AIDS test What the heck??? At least I now know I'm not sick from AIDS. I was scheduled for the endoscopy/colonoscopy though but due to some confusion about the preperation (I drank the wrong stuff and got sick ) the test was cancelled. I wish that wouldn't have happened because at that time I'd only been on the diet 3 weeks.

[skbird]

About the gene test being accurate - one of the genes I have is mostly associated with people of Medeterranean descent and since I'm 3/4 Dutch and the rest Welsh/Scot, I wrote in and asked if this could be a mistake. The reply I got was no - and that anyone in Europe could have crossed over a gene at some point. As you can see from my av, I don't *look* like I have any Medeterranean in me at all.

So I don't know if it's a mistake or not, in either of our cases. You certainly sound like you have Celiac. And an endoscopy probably wouldn't show damage at this point, though it still could - and at any rate it might be good just to check out everything else to make sure nothing else is up in your gut. It's a good idea.

Take care

Stephanie

[Guest nini]

Just my .02 cents... I personally do not think at this point the biopsy is necessary, it's not going to change anything one way or the other as far as you having to be gluten free. You know you have to be gluten free. IF you do not get any better after say 6 months with absolutely NO improvement, then look into further testing to see what else is wrong... But whether or not you have the biopsy is not going to change how you treat this. Strict Gluten Free diet period. Sounds like your dr. is just trying to do a CYA (covering his butt) after not getting it right before.