Endoscopy Or Not?

[lawstudent]

The doctor's office called and the secretary says that the doctor considers this a weak positive for celiac and wants to do an endoscopy to see if it is "celiac sprue". I am not inclined to want to do the endoscopy because regardless of the endoscopy results, the end result is the same...stay away from gluten. Am I right on this?

I also found it interesting that the Q&A on this site seems to think that the positive Reticulin test is more like 65% of patients with active disease.

Lab Results:

Reticulin IGG AB = 1.20 (negative is <1.20, so lab flagged as a positive)

This test notes that those reticulin antibodies are NOT specific for celiac disease and occur in 20% of patients with active disease.

[jayhawkmom]

My response is my opinion ONLY. OK. That's my disclaimer! =)

My personal opinion.... if your test is a mild positive, it's positive. It's like a pregnancy test, you are either pregnant or your not. You can't be "a little pregnant." If the endoscopy is soley to look for Celiac damage... I would NOT do it.

Both my daughter and I have had endoscopies/w biopsies. In my daughter's case... we just didn't know any better and thought that if the doctor said she had to have one, then she had to have one. We were VERY glad she did have one though, because they found intestinal ulcers that would not have been treated otherwise.

For myself... my doctor was reasonably convinced, but due to an issue with swollowing - he thought there might be more to it.... and it turns out that he was right. So, in my case... I'm glad I had it done.

In our cases, I would not do things differently. But if a doctor were to just say, "Yea... your test results are positive, let's go for the proof" - knowing what I know now... there's no way in the world I'd consent to an endoscopy.

Whatever you decide.... best wishes to you!!!

[kbtoyssni]

I don't see any reason why you'd need an endoscopy (unless, like jayhawkmom mentioned, you suspect something in addition to celiac). The current diagnosis you have means you need to be gluten-free whether you have celiac sprue or not.

[VydorScope]

Frankly, the bisopy is an outdated test that for some reason America is holding on to as worth somthing. REGUARDLESS of the blood test results, I would not do it.

Try the diet, if you get better, then challenge with gluten if symptons return, then you have to be gluten-free for life. Its that simple. Your test score is so border line that I would not trust it alone, its with in the error of the tes for sure.

Thats just my opinion, I am not a doctor, nor do I wish to be.

[aikiducky]

Ok, not meaning to confuse you, and this is just my opinion, I'm not a doctor, etc etc... but I would do a biopsy, just to see what is going on in there, and after that I would try the diet regardless. As far as I know that blood test result that you got is not a very strong indication of celiac disease on it's own... but since you're looking into it, I assume you have some symptoms that point in the direction? So trying the diet is in any case a good idea I'd think.

You knever know, you might end up with a positive biopsy, and an official diagnosis, and that would make life easier in some ways (convincing your doctor and getting family tested for example) and more dificult on others (getting health insurance). And maybe there's something else that it's good to know about. Just don't let a negative biopsy deter you from trying the diet.

Pauliina

[pixiegirl]

LOL ok here is another opinion.... I think it depends on you, how likely you will stick to a gluten free diet if your not 100% sure you have Celiac.

I didn't even have a positive blood test at first, but had issues for years, I was tested for Celiac and was told the test was normal, having never heard of the disease I researched it and every single symptom (well almost) I had. So I did a test for a week... no gluten at all. And the runs I had for 11 years went away in a week. So I knew right then and there that I was not going to ever eat gluten again (intentionally).

About a year later in an argument with my doctor (I have since changed doctors) I when thru Entrolabs and came back with everything saying Celiac, my DNA test I had both of the really "main" genes for Celiac (my doctor was insisting that going gluten-free help me only "in my head", but in truth is sure helped the other end too) and he still didn't buy it.

So my point is.... some people need a positive test to actually stay gluten free, some don't. All I needed was a week of going gluten-free to convince me.

Susan

[2kids4me]

Just another humble opinion here. Many factors should be considered for a biopsy/no biopsy. We made an informed decision to do the biopsy - on daughter becasue her results were borderline and she had pre-existing autoimmune disease. We agreed to the biopsy on my son because he also had heartburn and the Dr was worried about esophageal damage - he wanted to visualize the area. Plus he was diabetic.

I, as an adult would probably choose diet alone if celiac was suspected, esp after becoming familiar with it.... I mean the treatment is dietary so its a matter of eating differently. Heck I eat gluten-free because my kids are gluten-free.

But we (dh and I) were deciding for our minor children and it was going to impact the rest of their lives. Confirmed celiac meant we had support from a GI dept and the resources there - it meant that when the endocrinologist sees our son she can consult with her collegue in GI about any concerns of overall health. The GI dept wants to see the children annually, esp during the teen years to address any non compliance issues and support the children emotionally.

and no you dont always need a biopsy to confirm celiac, we dont have enterolab in Canada so I am not familiar with their testing.

I look at the biopsy as part of the testing process - and it can be declined if a patient or the parent of the patient feels it is not necessary.

When they say - "we should perform a biopsy to be sure" ..........from a Dr standpoint that may mean " I want to see the extent of damage and rule out other causes and/or rule out concurrent bowel damage from some other cause" (like, reflux resulting from celiac). The first part of the small intestine is where the pancreatic duct and bile duct enter ...... they are crucial point sin the digestive tract and you can only see that area well with an endcoscope.

I dont see it as outdated but a useful tool in the diagnostic process - that is used along with blood results.

Does that mean everyone needs a biopsy ? NO, if your blood results or genetic tests are conclusive - and you respond well to gluten-free. That should be all that's needed.

If you live somewhere that does not have access to something like enterolab or the country's health system wont recognize the results as valid...and you have symptoms that may indicate celiac or some other disease process in the bowel - then biopsy can be useful.

If a celiac has gone years undiagnosed - they would want the biopsy to look for permanet scarring or malignant changes in the cells lining the small intestine. This impacts prognosis and treatment.

It should be a case of informed consent. I dont think anyone can say conclusively: that a biopsy is not needed AND no one can say: biopsy everyone

[AmandaD]

I swear the biopsy made me more "believable" with my family doc, etc. While your test means you have sprue for sure. I'd do the biopsy so that you can have that stupid "gold standard" diagnosis that they call it....

I also felt good about having it because then somebody really could took a good look around in there to make sure I didn't have ulcers or anything...

[2kids4me]

and ...at least in our circumstance... it helped our son stick with gluten-free.

After 2 years gluten-free the "attitude of a teen" surfaced in our son. Questioning things etc.

He started asking "what if" questions: "What if I just had one donut? Would I just have sore legs for day?" (in his mind that would be tolerable in order to have a wheat donut).

I dug up a copy of his biopsy report, got pictures of normal villi and flattened ones and explained what the biopsy meant (subtotal flattening). Then, because I am dealing with a teen now - I gave him the choice.

"You can eat what you want but if you choose to eat gluten - this is what will happen inside"

I think that if I just had a picture from a book to show him but no real "evidence" that it was happening to him ... that he may have decided this was where he wanted to rebel - to show me that the books dont have all the answers...

and I added: "Just like eating a whole choc bar with get your BG sky high and you'd be peeing very hour, eating gluten impacts your body" ...." You get to choose if you want that to happen"

He has never expressed a desire to eat gluten again.

I did however give him half a choc dip kinnickinnick donut for his afternoon snack, that helped

He makes excellent choices and the power is his and his alone

[Suzie-GFfamily]

I think whether you feel the biopsy is useful or not is a very personal decision. Doing your research beforehand and considering the pros and cons is quite useful. I felt it important to look to the future (my 2 oldest kids are 5 and 8 yrs now)- so I wanted to consider the teenage years as well as the "here and now". The treatment is for life, it's restrictive and can potentially have an impact on their social life.

For myself, I didn't have a lot of symptoms and I didn't feel sick - so I've found it useful to have a picture of my intestine. There was obvious damage that could be seen with the endoscope even before the biopsy samples were viewed under the microscope. Just remembering the image of that picture kept me from "cheating" during the first couple of weeks on the diet. Even though I had believed that I was celiac, the endoscopy results really brought that message home.

My oldest child is symptom free- and he's already questioning the results of the blood test so I feel the biopsy is very important for him. If the biopsy indicates celiac I think it might make a difference to his dietary compliance. He'll be getting the procedure done this week. We'll switch him to a gluten-free diet regardless of the results to see if it makes any difference for him - but if his results are negative then he can decide to do a gluten trial in the future when he's older, if he decides he wants to do that.

My daugther does have some symptoms- so we could maybe have done without the biopsy in her case, but I did want to see what was happening on the inside before she started her gluten-free diet.

I'm not familiar with the blood test you mentioned. Maybe they could do a celiac test (ie EMA or tTG) before considering an invasive procedure? The results from the EMA or the tTG antibody tests are pretty specific and sensitive for celiac disease.

There is an article by William Dickey that discusses reasons to consider a biopsy, and also discusses making diagnosis without biopsy too:

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

It's not an easy decision. But if you consider the pros and cons of biopsy or no biopsy, you can probably come up with a decision that you are comfortable with in your circumstances. The actual decision is going to be different for different people because it depends on many factors.

Good luck. It's pretty stressful trying to decide which way to go, but I felt a lot better once we finally made our decision.