Importance Of Biopsys

[Guest GITRDONE]

I have read under various topics that alot of you have choosen not to get a biopsy. So I'am wondering how do you know if your intestines are healing and/or do not have any permenant damage? And when should you go back to the doc for another endoscopy??

[KaitiUSA]

tTG and EMA blood tests are the specific ones for detecting damage. Doctors test usually after 6 months to see if the levels have gone down. Usually 3-6 months gluten free will heal damage.If you have not gotten a biopsy and had just positive blood tests then whatever tests were positive should be followed up on to see if levels of them went down. Blood tests are used to measure compliance of the diet.

[ianm]

I have never had any of the celiac tests so I don't know for sure what is happening in my gut. What I do know is that I was extremely sick, tired and overweight. I stopped eating gluten and my life underwent a drastic transformation for the better. I don't want any of the tests because I can't afford to get that sick again. I have turned my life around and can't afford to mess it up again. Plus I am a single parent and my son needs me to be as healthy as I possibly can. The gluten free diet is all I can do any way so for me it just isn't worth it to get tested.

[Guest nini]

I only had blood tests. No biopsy. I too was very very ill prior to the blood tests definitively dx me with celiac. I don't need to know what's going on in my gut, my general health is so much better than it was. It's not worth it to me to go through a biopsy when I already know what is wrong with me and what fixes it. I personally don't feel that biopsies are necessary.

[Carriefaith]

Every doctor seems to diagnose and deal with celiac disease differently. To diagnose, some just do blood tests, some do blood tests and a biopsy, and few still do the dietary challenge but it has been done.

In my opinon, I don't think that a follow up biopsy is necessay if you are following the diet and feeling better. Very rarely celiacs can get refactory celiac disease where the intestine doesn't heal, that's why I think follow up biopsies are important if you aren't feeling better on the diet.

[frenchiemama]

I was diagnosed through bloodwork. My doctor offered to set up a biopsy if I wanted it, but I decided not to. For one thing, the course of treatment doesn't change based on the results of the biopsy. So it would really be telling me only what I already knew, that I have celiac disease. We decided that if I wasn't feeling better in 3 months that I would have one, but I am feeling better and still don't really see the point.

[lovegrov]

Biopsy diagnosis is still the gold standard and it can also be used to check for any other possible problems. But most doctors don't think a followup biopsy is necessary unless you continue to have problems.

richard

[julie5914]

I wanted a diagnosis, and I would have done it if my doctor wanted it for diagnosis. They diagnosed based on blood tests alone though since they were so high and since I had the EMA positive. I was happy because I felt like they were right, I didn't want to wait anymore to start the diet, and it saved me time and money to not have to do the procedure. They will be checking the blood levels in 3 months to check up on me, but I already feel a million times better.

[Guest nini]

Richard, according to the latest info I had read, the biopsy is NO LONGER THE GOLD STANDARD. The treatment is the same whether you are dx with blood tests alone, blood tests and biopsy, or dietary challenge...

[Pegster]

My GI Doc also said that the intestinal biopsy was the best diagnostic tool for celiac disease. When she told me this, I had already been gluten-free for six months after a positive biopsy for DH. I asked her why she felt another biopsy would be necessary since I was already on a gluten-free diet. She basically said it was so I could know I have celiac disease "for sure". I decided then that maybe she didn't know as much as the people on this site so I turned down the biopsy. Now I see that maybe I should have one just to check for healing or damage--even though I've been gluten-free for 15 months now. Any thoughts?

[KaitiUSA]

Biopsies have been considered the gold standard for diagnosis but that is changing. Blood tests are becoming more sophisticated. The tTG test will be taking place of biopsies in kids coming up in the near future.

Pegster-usually they will want to do a followup 6 months later to see if damage has healed if you had a biopsy to diagnose you.

Diagnosis from blood tests they will do the ones that showed up positive 6 months later to see if levels went down. This is how they test for compliance with the diet.

[celiac3270]

How is it not still the gold standard? The EMA isn't going to replace it anytime soon, and the tTG, though good, is not yet at a point where it can fully replace the biopsy.

[KaitiUSA]

It is still considered the gold standard but that will be changing in the near future.

My GI doctor said " biopsies are so last year" lol...he said that there are better ways for diagnosis without being invasive. I think this will be something that happens in the near future. In some cases biopsies are good when in question though. I am not downplaying biopsies because they can be very useful

[Guest nini]

I can't find it right now, but I read several medical journals recently that stated that Biopsies were no longer the gold standard because the diagnostic protocols are changing for celiac. People are presenting with symptoms that are NOT classic celiac symptoms and the biopsies are overlooking gluten intolerance and the genetic predisposition to celiac which leads to full blown celiac damage. In a lot of cases patients have no noticeable damage to the intestines YET, but the more specific blood tests are confirming EARLY Celiac. Why wait till damage is done or is so severe before dx a patient with celiac, when the blood tests clearly show the propensity for this? In children especially, most are too young for a biopsy to show any damage, and even if blood tests are inconclusive, when put on a gluten-free diet the patients respond "miraculously". The risks of an invasive procedure like a biopsy, although small, are still present, such as perforation of the intestinal wall or other such complications.

The medical community is making great strides in celiac research, however, there are so many Dr.s out there still unwilling to dx celiac if someone presents with symptoms other than the classic celiac symptoms. In my case, I was Overweight (despite not being able to keep food in me) and I was initially told it couldn't be Celiac because you ONLY LOSE weight with it. So also, Dr.s are still clinging to the outdated notion that biopsies are the only way to positively dx celiac.

When is a biopsy useful? When Celiac is suspected because of blood or fecal screenings, the diet has been implemented for at least 3 months and there is NO positive dietary response.

[Guest GITRDONE]

YOU ARE ALL AWESOME WHEN IT COMES TO INFORMATION & VALID OPINIONS. SORRY I HAVEN'T RESPONDED EARLIER. MY COMPUTER WAS BEING UNCOPORATIVE

OK, SO MAYBE NOT A BIOPSY, BUT WHAT ABOUT THE ENDYSCOPE??? I WAS MISDX FOR 15+ YEARS. WHEN THEY DID THE FIRST BIOPSY THEY SAID I HAD "COMPLETLY FLAT INTESTINES, WITH NO VISIBLE VILLIA". SO WITH THIS IN MIND, WILL A gluten-free DIET HEAL THE INTESTINES 100%???

SUSAN

[Carriefaith]

I HAD "COMPLETLY FLAT INTESTINES, WITH NO VISIBLE VILLIA". SO WITH THIS IN MIND, WILL A gluten-free DIET HEAL THE INTESTINES 100%???

A very strict gluten free diet will result in healing of the villi in the small intestine. Only in very rare cases the villi cannot heal.

[Guest nini]

Susan, how are your symptoms when you are on the gluten-free diet? Are you feeling better? Is your health improving?

If it is, then that is a pretty good indicator that the villi are healing... If your health hasn't improved at all, and you are 100% gluten-free, then you may want to have another endoscope/biopsy to see what's going on. BUT... if you are feeling better I don't see a reason to do a follow up biopsy. And my Dr. said that a biopsy would only be necessary if I did not get better on the gluten-free diet.

[Guest GITRDONE]

Yes I do feel much better when on a gluten free diet. I have also noticed that when I am exposed that I experince all the symptoms that have mentioned under other topics (fog brain, vomiting, dizzy, the big D, etc). It also seems that the longer you are gluten-free, the harder it hits you when glutened.

Thanks for your comments. Its great to have you guys out there and to know you are not alone.

Susan