Biopsy Necessary?

[ana]

I got my test results in today, and Itested positive. My doctor said in order to have a more complete diagnosis, i should get a biopsy. She said, before starting any gluten free diet, go have a biopsy done. I am not too excited about doing that, but I set up the appt. for it. How important is it to get it done? the test i had done was was the Gliadin Antibody panel.

[Jestgar]

It's up to you. Do you need the biopsy to prove to yourself that you have Celiac? If not, I would say don't do it. All you will be doing is proving the blood tests right and making the doctor feel like she's done everything she's supposed to.

[Lisa]

ana:

With a positive blood test done. The choice is yours. An endoscopy exam and biopsy is considered the "gold standard" with regards to DX. Positive blood work is also a very good indicator that you have Celiac Disease.

Your doctor is correct, in stating that in order to have an accurate biopsy, you must remain on a gluten filled diet. The biopsy, with show you the extend of the damage to your small intestines, whereas a blood test will not.

Many people here have accepted their blood work as confirmation and have elected not to continue with the biopsy. It is a matter of choice, and course as well, financial.

If you elect not to continue testing, you can go on the gluten free diet immediately and begin healing. The diet is not as daunting as it appears. We are all here to help you and others along that road. Trust me. We have all been there.

I hope that this was helpful, and please stay in touch. We have a lot of great people, who have a lot of good answers.

[par18]

I got my test results in today, and Itested positive. My doctor said in order to have a more complete diagnosis, i should get a biopsy. She said, before starting any gluten free diet, go have a biopsy done. I am not too excited about doing that, but I set up the appt. for it. How important is it to get it done? the test i had done was was the Gliadin Antibody panel.

Personally I think it all depends on the individual. If you are a strong-willed person who can accept the blood test diagnosis and be compliant on the diet then there is no reason to get a biopsy. Just go on the diet don't look back and be prepared to start feeling good again. Don't let anyone try to influence you otherwise. This includes family, friends or members of the medical profession. The only diagnosis that "really" counts is the positive diet response. The majority of the money to be made by the medical profession when it comes to Celiac Disease is on the front end (methods of diagnosing). Save your money and use it to buy some speciality gluten free products. Good luck.

Tom

[Helena]

If your blood tests were positive across the board, I'd say you have celiac--especially if the EMA test was positive. But even so the biopsy might be helpful in telling your dr. how extensive the damage is so that she can monitor your progress. You might ask your doctor about this--some doctors follow their patients more closely than others.

I didn't end up getting the biopsy--but if I hadn't been on a nearly gluten free diet before getting checked out for celiac I probably would have gone for it.

[ana]

my doctor doesn't seem to know a lot about it, she was rather skeptical about me having it. She asked, "why did you want the test for this?", and i told her my nephew tested positive with biopsies and after reading more about it, i saw i have almost every symptom listed on most of the websites i'd read. She said, you aren't anemic and you don't have problems with your thyroid. those are usually big indicators of malapsorption. She said i could test positive for all kinds of reasons and to go and get a biopsy before making the assumption i had the disease.

I don't do well with anasthesia so i'm reluctant to do something like this. I agree it might be good to see the extent of the damage to my intestines, i'm in my 40s. so it might be extensive, as i've had symptoms all my life and had always been diagnosed with IBS and excema and various other things.

My g-grandfather died of colon cancer. so it is something i am guessing he may have had. I'd always dreaded that it was going to be my fate since i'd suffered so much with my stomach. This info. is a relief because it doesn't mean it's because i'm highly emotional or high strung, but something that can be controlled with diet. i've been reading this site for a while and see that there are a lot of very supportive people and I hope to learn a lot from you all.

[Lisa]

ana:

There are many emotion that run through celica. Being emotional and sometimes depressed is certainly one of the main symptoms. Your system is way out of wack and your body is not getting the vitamins or nutrients that you body need to function is a natural way.

If you would like to choose the gluten free diet, we will be there and willing to get you off to a good start. "Nini" has a wonderful beginners kit that she can e-mail you.

Take heart, we have all been in your shoes.

PS: Other than the experts in the field, we know more about celiac than most doctors do. (my doctors, do)

[tarnalberry]

there aren't all that many reasons to test positive on the celiac blood tests outside of having celiac disease. I'm sorry your doctor is uninformed.

while many doctors do still use the biopsy as the gold standard, the choice is yours. if you need that diagnosis to stick with the diet, that's one thing. but you don't need the biopsy to go gluten free. many of us here never had a biopsy, but know that we do much better if we stay strictly gluten free.

[Guest nini]

If the blood tests were positive you do not need the biopsy. (This is what my Dr. told me). I did not have the biopsy. Too often the biopsy misses damage (if the damage is sporadic or if the patient hasn't been eating enough gluten to cause major damage) I've heard too many stories of people having positive blood tests, but negative biopsies and being told to continue to eat gluten because they can't possibly have celiac, only for a few years down the road after they've gotten sicker and sicker the biopsy finally comes back with MAJOR damage... the biopsy is not infallible and in my humble opinion is outdated as a diagnostic tool. Positive blood tests are clearly indicitive (even if not positive you can still have it) but ultimately the positive dietary response to the gluten-free diet is your best diagnostic tool.

if you are interested in my newbie survival kit simply click on the link in my signature for my webpage and at the bottom of my webpage there is a link for the newbie survival kit, one link is the zip file and the other link is all the files individually if you have trouble downloading the zip file

[ana]

Thank you nini. Already i feel welcome here, a good friend of of mine calls me Nini as my nickname. i don't know why she just always has.

Is htere a place to write an introduction to the group here or do you just jump in and start asking questions and posting? thanks.

[Willow5]

I got my test results in today, and Itested positive. My doctor said in order to have a more complete diagnosis, i should get a biopsy. She said, before starting any gluten free diet, go have a biopsy done. I am not too excited about doing that, but I set up the appt. for it. How important is it to get it done? the test i had done was was the Gliadin Antibody panel.

Wondering what were your values along with the lab norms etc? From what I read (and I am NOT an expert on this) it seems that the Immunoglobulin A anti-endomysium antibodies, IgA anti-tissue transglutaminase are more conclusive?

[Suzie-GFfamily]

Wondering what were your values along with the lab norms etc? From what I read (and I am NOT an expert on this) it seems that the Immunoglobulin A anti-endomysium antibodies, IgA anti-tissue transglutaminase are more conclusive?

I was going to ask this question too. Do you know which tests were included in the panel you had done?

If they did an anti-gliadin antibody test only than that is not the recommended blood screening test for celiac disease. Anti-EMA or tTG would be much better. Some physicians will give a pos diagnosis of celiac disease if either of these tests are pos, especially if the results are strongly positive (so you need to know the cut-off for normal and the level you had).

As others have said, whether you decide to have the biopsy after getting a pos blood test result on an anti- EMA or tTG blood screen will depend on many different factors.

Some physicians will classify you as "undiagnosed" if you do not have the biopsy, but others will accept the pos blood test results (depending on which test you had done) and a pos dietary response.

One reason to have a biopsy that has not been mentioned so far is whether you might have any interest in being part of a research study on celiac disease in the future- for example, if a new drug treatment is ever developed. These studies might only be open to individuals with biopsy proven celiac disease.

However, more important than this is whether you think it could make a difference in how compliant you'll be with the diet. It's a strict 100% gluten-free diet for life. Many people find it much easier to do any necessary testing in the beginning, and not have to go back on gluten later on. Whether the biopsy is necessary or not will largely depend on you.

Here is an interesting article from Swenden (it's a little bit old, interesting that the medical community has not yet followed this path and is still largely relying on biopsy for conclusive diagnosis):

"Is small bowel biopsy necessary in adults with suspected celiac disease and IgA anti-endomysium antibodies? 100% positive predictive value for celiac disease in adults." January 1996

Open Original Shared Link

And another interesting article:

So Why Do Celiacs Still Need Biopsy? By William Dickey, Ph.D., M.D., F.A.C.G.

https://www.celiac.com/st_prod.html?p_prodid=1280

Suzie

[ana]

I was going to ask this question too. Do you know which tests were included in the panel you had done?

If they did an anti-gliadin antibody test only than that is not the recommended blood screening test for celiac disease. "

I think that is the only one I got done. I asked to be tested for Celiac and I really was hoping they knew which tests to run. I get the results back and she seems pretty indecisive about it and wants me to go to the GE specialist. the numbers were

Gliadian Ab IgA Neg <11 U/mL Equivocal 11-17. Positive >17 my number was 19H

Glidian Ab IgG Negative <11 U/mL Equivocal 11-17 Positive >17 My number was 30H

I had stopped eating as much gluten as I had been eating before the test, i cut out all cereals and bread. I was feeling so terrible I wanted to start right away. I hadn't even thought to get tested because if it worked, that taht's all i needed. after a painful month in June with the absolutely worst stuff I'd had with my stomach in years a friend convinced me to get tested when i'd told her about my nephew's diagnosis.

It seemed like the answer to so many health problems in my life. I was convinced that it really shouldn't hurt to eat after every meal. and It does. My mother has always suffered all her life with stomach issues and i'm urging her to get tested.

[Willow5]

Sounds like you have a good combination of results with the two positive results - still, the others are often considered more definate. Your Dr is referring you to a GI specialist. That is good. If you do not get the biopsy you may be left wondering for a long time if you really have Celiac! I did not get the referal when I got my blood tests to do the biopsy and just went on a gluten-free diet, now I wish I had just gotten it over with while I still had the antibodies in my system. Since I am esentially symptom free I plan to go back on Gluten for a couple of months or so and get re-evaluated by a GI Doctor I would really like to get the Biopsy if that is what it takes to say for sure that I do need to be gluten-free.