How Important Is Biopsy For Diagnosis?

[jasonD2]

I have a slightly elevated stool IgA for gluten but i didnt have any other confirmatory tests. Once I stopped eating gluten, i repeated the test and it was negative for Abs, which was only a few weeks after i went gluten-free. I really dont want to do an endoscopy if i dont have to. what else can be done? My doctor believes i just have a gluten sensitivity and not celiacs. Thing is i am 100% lactose intolerant so would that be somewhat diagnostic for celiacs? the enzyme is produced on the tip of the villi so if the villi have been damaged then it makes sense there is no lactase enzyme being produced.

Right now im avoiding gluten as best as I can but not completely. I dont eat bread,s pastas, and avoid all things that might have gluten but im sure im still being exposed. I was forced to eat at a Denny's last week and ordered food that i thought was safe. i later found out the rice i had was not gluten-free. Thankfully I dont get severe symptoms when i eat gluten like some folks, but I still dont know whats going down on a microscopic level.

im just not sure what I should do now. what would be the best course of action? id appreciate some feedback

[gfgypsyqueen]

Whether or not to get a biopsy seems to be a personal choice here. I personally believe it has helped me to have a positive diagnosis. One benefit is that they rule out other diseases. It also causes me problems (with Drs and with schools) for my one child who does not have an "official" Celiac diagnosis through biopsy. She reacts to gluten and is so much better gluten-free!

Since you are sort of gluten-free now, it may be harder to go back on the gluten for months just for a biopsy. Look into Entero Labs as another option.

If you believe you have Celiacs or gluten sensitivity where you would need to adhere to the gluten-free/CF diet, please do some research and get the knowledge you need to keep yourself healthy. You can still damage your intestines and increase your risks of serious problems later on by continuing to expose yourself to gluten whether or not you have reactions.

FYI: I like eating breakfast out. If you get dragged to Deny's again, order fried eggs or have them crack eggs for your omlet. (I stick to Denver or Western Omlets.) The egg mix that is purchased by restaurants can be risky, so ask for the freshly scrambled eggs. The hash browns are fine. Make sure to tell them no bread on the plate. No grits, bread, biscuits, or toast. That is usually a safe meal and filling too

[AndrewNYC]

it can be totally irrelevant. There are people with negative biopsies who cannot stand to eat any amount of gluten. So does it matter whether their biopsy is positive for celiac or not? Not really. They know they can't eat gluten. The biopsy test is finicky...your doc has to capture a villi in precisely the right state for the lab to test. If he misses by a hair then that can throw the results.

[dollamasgetceliac?]

What I was wondering , is what if you have damaged Villi here and there? That is the reason I did not want a repeat Endoscopy. If you have Ulcers they are sores spread out here and there , so is that the same with the Villi?

[Ursa Major]

As has been said, in order for a biopsy to have any value for diagnosing celiac disease you either should have it BEFORE trying the gluten-free diet, or you have to go back to eating a ton of gluten for months. Which is NOT a good option at all, and quite risky health-wise.

And even if you do it right, a positive biopsy would confirm celiac disease, but a negative one can NEVER rule it out.

The reason for that is, that there are 22 feet of small intestine, and they only take a few samples from the top third at best. And if the damage is patchy (which it usually is), then it is almost a miracle if they biopsy the damaged spots. Especially because the damage is microscopic, and even if they go in with that little camera to try and biopsy damaged spots, they may not see any obvious damage without a microscope.

Many people were told right after the biopsy that they did not have celiac disease, with the pathology results actually saying that they did. Just because the doctor didn't see the damage didn't mean it wasn't there.

Why does it matter whether your file says 'celiac disease', or whether it says 'gluten intolerant (or sensitive)'? The treatment is identical, consisting of the gluten-free diet. And it actually can be of benefit to not have the official celiac disease diagnosis in your file, as some life insurance companies would deny you coverage if you have that diagnosis.

[lizard00]

So I think I understand your question. Because it was how I felt. If you don't have Celiac, then you don't have to worry so much about CC and the occasional indulgence. Am I right? It's ok. I was there too.

Keep in mind that there is a school of thought that gluten sensitivity or intolerance is the beginning of Celiac, which means, left unchecked, could become Celiac. Could be you caught it early enough that your body just wasn't producing a ton of antibodies because your intestines were not horribly damaged... yet. Or you could just be non-celiac gluten intolerant. What I have learned though is that can be just as dangerous untreated as Celiac. I really wanted to know, but wouldn't put myself through eating gluten regularly again just for a test that may or may not pick it up. And then be back to where I started, only feeling miserable again.

I answered your other thread about the genetic test, so if you really want to know, and I completely understand that, see if you can get your doc to go with the genetic test. The genetic aspect of Celiac is still new, so you can't even be totally sure about that, but it is much less painful that eating gluten. If your doc won't agree to it and you want to do it anyway, you can always get the Genetic Panel through Enterolab. The thing about genetics is that something like 98-99% of Celiacs possess the genes they are looking for, and that is not influenced by what you chose to eat. So while it's not accurate, there are not nearly the variables that you encounter with the Celiac Panel.

[purple]

One thing you can dare to try is an osteopath/alternative medical doctor. See if there is good one in your area. Ours was the only one recommended in Idaho. First visit for my daughter was $350 for one hour. We paid another $100 for some vitamins and an herb they had to order. Take a complete list of all the symptoms you have of anything wrong with you from as far back as you can remember, all your medication bottles, relatives illnesses, and all your copies from all your doctors of anything they ever did for you. The test may seem weird but no surgery. Most insurances wont pay for it so expect to pay cash up front. Our doc is very intelligent. He has to know the md and the homeopathic info. He is also a surgeon and can take mercury fillings out of your mouth. He is a chiropractor too. Full service !!! We have been blessed. He got my mom off her high blood pressure meds and found out she had lead in her heart on the first visit(shes not celiac). Other visits are $95 each and we haven't had to go back yet, its been since mid Feb. Go to the back of the book ( page 397),"The Gospel Of Health, by Valerie Saxion, and she has a list of 750 of America's leading complementary alternative medical doctors. We found the list after God directed us to our doc. Our doc really cares how you feel and wants to make you well by treating the disease and not the symptoms. We know the only cure for celiac is no gluten but there are so many diseases you get along side it that can be treated naturally to make you well/better. Ask God to show you what to do. We did, I Praise him!