No Biopsy Ordered

[LDJofDenver]

Recently tested for Celiac disease, and my blood test (tissue transglutimase) showed positive for celiac disease.

I have an adult son who was diagnosed 12 years ago with celiac disease, and I suspect my Mother had it all her life (and was misdiagnosed with both colitis and IBS).

My doctor said that, given my positive blood test and the celiac disease in my immediate family, he felt a small bowel biopsy was not necessary.

Just looking for feedback on this, I have been reading various Celiac websites and they usually push towards the biopsy for confirmation. Maybe he's right that it's an unnecessary procedure in my case, given the celiac disease in my family?

I should add that I have been through the wringer, so to speak, with OTHER blood work prior to this -- all of which came back normal for thyroid, liver, kidney, pancreatic functions etc. Celiac was the last thing they looked at.

[Lisa]

Recently tested for Celiac disease, and my blood test (tissue transglutimase) showed positive for celiac disease.

I have an adult son who was diagnosed 12 years ago with celiac disease, and I suspect my Mother had it all her life (and was misdiagnosed with both colitis and IBS).

My doctor said that, given my positive blood test and the celiac disease in my immediate family, he felt a small bowel biopsy was not necessary.

Just looking for feedback on this, I have been reading various Celiac websites and they usually push towards the biopsy for confirmation. Maybe he's right that it's an unnecessary procedure in my case, given the celiac disease in my family?

I should add that I have been through the wringer, so to speak, with OTHER blood work prior to this -- all of which came back normal for thyroid, liver, kidney, pancreatic functions etc. Celiac was the last thing they looked at.

Welcome LDJ!

You seem to have one of the informed doctors.

A positive Celiac Panel, is in itself a positve diagnosis in addition to a strong family history.

In your case a biopsy can look for the level of potential damage due to Celiac or other digestive issues. With your other normal functioning test, your doctor does not see the need for further testing.

Welcome to the Club!

[ShayFL]

You have a great doctor!!

Welcome to the path of wellness with your gluten-free diet.

[Fiddle-Faddle]

Welcome!

You have one of the FEW doctors who knows what he is doing AND isn't trying to make extra $$ by doing an unnecessary and invasive procedure on you just because insurance will cover it.

The biopsy has long been touted as the"gold standard" of diagnosis of celiac. Many of us here think that that is perfectly ridiculous, as the blood tests and dietary response are more accurate.

The biopsy simply confirms ADVANCED cases of celiac, where there is so much intestinal damage that it can't be anything else. But that's like waiting to diagnose a peanut allergy until someone has an anaphylactic reaction--and telling the patient that they can and should go ahead and eat peanuts even though they have hives and vomiting from them, because they didn't yet have an anaphylactic reaction.

Anyway, even without celiac disease in your family, given your bloodwork and symptoms, if you are making antibodies to gluten, it's pretty obvious you should not eat gluten. But the family history does make this (more of) a no-brainer!

I hope your health improves very quickly on the gluten-free diet, and I hope you found (as I have) that the diet is WAY easier to live with (and enjoy, even!) than one would think. There are tons of great recipes on this site, and lots of people who have been through the same wringer from whom you can get advice.

Unless you have other food intolerances, you can eat chocolate--so who needs gluten, anyway???

Here's to good health!

[blueeyedmanda]

My dr was the same way. I had a positive celiac panel and that was all she needed. She said there was no reason to go through with the biopsies, she had the answer for what she needed and I started the diet as soon as I got home.

[LDJofDenver]

Welcome!

You have one of the FEW doctors who knows what he is doing AND isn't trying to make extra $$ by doing an unnecessary and invasive procedure on you just because insurance will cover it.

The biopsy has long been touted as the"gold standard" of diagnosis of celiac. Many of us here think that that is perfectly ridiculous, as the blood tests and dietary response are more accurate.

The biopsy simply confirms ADVANCED cases of celiac, where there is so much intestinal damage that it can't be anything else. But that's like waiting to diagnose a peanut allergy until someone has an anaphylactic reaction--and telling the patient that they can and should go ahead and eat peanuts even though they have hives and vomiting from them, because they didn't yet have an anaphylactic reaction.

Anyway, even without celiac disease in your family, given your bloodwork and symptoms, if you are making antibodies to gluten, it's pretty obvious you should not eat gluten. But the family history does make this (more of) a no-brainer!

I hope your health improves very quickly on the gluten-free diet, and I hope you found (as I have) that the diet is WAY easier to live with (and enjoy, even!) than one would think. There are tons of great recipes on this site, and lots of people who have been through the same wringer from whom you can get advice.

Unless you have other food intolerances, you can eat chocolate--so who needs gluten, anyway???

Here's to good health!

[melmak5]

I was in a similar boat.

Endoscopy - no biopsies were taken (they thought I had a growth in my gut, when they didn't see anything, they didn't biopsy)

later on...

Blood came back positive & doctor said I had a choice to go through another endoscopy for a biopsy, but that he rand the numbers by a "celiac specialist" and since I was feeling better not eating gluten, that was enough for him.

I choose not to have another test just to prove what I already knew.

I have since had to switch GIs and am very lucky to be working with someone who also didn't feel the need to push a gluten-challenge and a re-scoping.

Not eating gluten and feeling better = solving problems without unnecessary tests!

Congrats on figuring out what is going on with your body and hopefully this will be the start of your healing and feeling better!

[LDJofDenver]

Thank you all for your replies. Now I'll just relax and get on with my new gluten free life! I certainly don't want any surgical procedure if I don't need to have it. I began my gluten free diet the day after my blood tests came back (not even two weeks ago).

Through my son, over the past decade, I at least have a jump start on all this. At least I have knowledge of it, unlike many others.

While I was (somewhat) surprised to test positive -- since my symptoms were quite different from my son's -- overall I had this great sense of relief. Because it explained everything that had been going on with me for years. I know it may take a while (who knows how long I've had this), especially for some of my nerve-related symptoms (pins and needles all over), but at least I know I'm on my way.

Welcome!

You have one of the FEW doctors who knows what he is doing AND isn't trying to make extra $$ by doing an unnecessary and invasive procedure on you just because insurance will cover it.

The biopsy has long been touted as the"gold standard" of diagnosis of celiac. Many of us here think that that is perfectly ridiculous, as the blood tests and dietary response are more accurate.

The biopsy simply confirms ADVANCED cases of celiac, where there is so much intestinal damage that it can't be anything else. But that's like waiting to diagnose a peanut allergy until someone has an anaphylactic reaction--and telling the patient that they can and should go ahead and eat peanuts even though they have hives and vomiting from them, because they didn't yet have an anaphylactic reaction.

Anyway, even without celiac disease in your family, given your bloodwork and symptoms, if you are making antibodies to gluten, it's pretty obvious you should not eat gluten. But the family history does make this (more of) a no-brainer!

I hope your health improves very quickly on the gluten-free diet, and I hope you found (as I have) that the diet is WAY easier to live with (and enjoy, even!) than one would think. There are tons of great recipes on this site, and lots of people who have been through the same wringer from whom you can get advice.

Unless you have other food intolerances, you can eat chocolate--so who needs gluten, anyway???

Here's to good health!

[leadmeastray88]

As everyone here has already said...

Consider yourself lucky! It takes an average of 11 years for people to get a proper diagnosis of Celiac! You don't have to undergo an invasive procedure to get a diagnosis, when positive bloodwork is really all that is needed.

It's pretty clear to me that that is what it is - you have a first degree relative with it (your son) as well as a family history and positive bloodwork. If you really need affirmation, you could always do genetic testing, but I don't see why that would be necessary seeing as your son has it. In any case, the diet is truly the best test.

Welcome!

[Tim-n-VA]

Different tests for the same condition are an attempt to eliminate false positives and that is the main reason they are ordered.

Ordering tests just to make money is an accusation that there is no statistical evidence for either way. Obviously there are some who believe it is widespread. I'm in the group that thinks it is more lawsuit aversion.

Dietary response, family history, blood tests, gene tests, family history, etc. are all tests of a sort. You certainly have enough of those to to be relatively sure you have it (i.e. no false positive).