Deciding On Biopsy

[Christina.V]

I have never had any GI symptoms that indicate Celiac's. In Mid-Dec 2013 I had extreme itching and bloodwork showed elevated liver enzymes. After many many blood tests with no diagnosis I had a liver biopsy (ordered by a GI Doc). This showed scarring on my liver. I was then referred "up" to a hepatologist because the GI doc was at a complete loss as to what the cause could possibly be.

 

The only change to my routine was that I started taking birth control pills in early November. In early Feb, I decided to discontinue them and seek accupuncture. Within just a few days of acupuncture I was no longer itching. However, my appt with the hepatologist wasn't until Mid-March.

 

During my visit with the hepatologist, we decided that it was highly likely that the BCP were the culprit of the elevated emzymes. She was being very thorough and had me tested for LOTS of things. I won't post the results of all the bloodwork, but the tests do seem to show I have Celiac's. My nutritionist definitely thinks I have it based on these results.

 

Immunoglobulin A - Celiac Panel: Range is 66-436, Value 300

TTG IgA: Range 0-19, Value 113

Anti-Gliadin Antibodies IgA: Range 0-19, VAlue: 147

 

Here are my questions:

 

- I realize the only way to make a definitive diagnosis is to do the biopsy. However, I don't necessarily need a "official" diagnosis to go gluten-free. If these tests are 80-90+% sure that I have it, I don't want to go through another procedure. Is there some reason I'm missing that I should go through with it?

 

- Are there other blood tests or potentially stool tests I should request from my hepatologist prior to the biopsy?

 

- Should I seek screening for my kids? They aren't showing any symptoms, but I'd prefer to be proactive.

[GottaSki]

I have never had any GI symptoms that indicate Celiac's. In Mid-Dec 2013 I had extreme itching and bloodwork showed elevated liver enzymes. After many many blood tests with no diagnosis I had a liver biopsy (ordered by a GI Doc). This showed scarring on my liver. I was then referred "up" to a hepatologist because the GI doc was at a complete loss as to what the cause could possibly be.

 

The only change to my routine was that I started taking birth control pills in early November. In early Feb, I decided to discontinue them and seek accupuncture. Within just a few days of acupuncture I was no longer itching. However, my appt with the hepatologist wasn't until Mid-March.

 

During my visit with the hepatologist, we decided that it was highly likely that the BCP were the culprit of the elevated emzymes. She was being very thorough and had me tested for LOTS of things. I won't post the results of all the bloodwork, but the tests do seem to show I have Celiac's. My nutritionist definitely thinks I have it based on these results.

 

Immunoglobulin A - Celiac Panel: Range is 66-436, Value 300

TTG IgA: Range 0-19, Value 113

Anti-Gliadin Antibodies IgA: Range 0-19, VAlue: 147

 

Here are my questions:

 

- I realize the only way to make a definitive diagnosis is to do the biopsy. However, I don't necessarily need a "official" diagnosis to go gluten-free. If these tests are 80-90+% sure that I have it, I don't want to go through another procedure. Is there some reason I'm missing that I should go through with it?

 

- Are there other blood tests or potentially stool tests I should request from my hepatologist prior to the biopsy?

 

- Should I seek screening for my kids? They aren't showing any symptoms, but I'd prefer to be proactive.

 

Welcome...and wow...you have been through it.

 

The liver biopsy based on elevated liver enzymes?  Well, those of us that took a long time to diagnose understand.

 

The best reason I can give for an endo at this point is to have a visual look at the digestive tract down to the top of the small intestine -- this information can be very helpful beyond the biopsies for celiac disease.

 

Now...that said...it is not essential...but may leave questions down the road.

 

Your antibody levels along with the elevated liver enzymes is enough for me...but heck, I'm not a doctor.

 

As for the kids...if you improve gluten-free - with or without biopsy along - your antibody levels should be enough for them to be tested every three years...more often if symptoms arise.

 

Hang in there...keep asking questions

 

Oh..I would be remiss if I didn't point out...you should complete the celiac antibody panel if it hasn't been done.  Let me know if you need to know what tests need to be done. 

[nvsmom]

Some people like to have the biopsy done just in case they don't heal in a timely fashion (still have symptoms) and the doctors want to go in again and check for other problems - it gives them something to compare to. Others like to have the biopsy to check for other problems, and some just like to have that extra confirmation to help with their willpower in staying gluten-free. That being said, keep in mind that the biopsy can give conflicting results once in a while and can make a diagnosis more difficult to get if it ends up being negative (it happens on occasion).

The other blood tests for celiac disease are:

TTG IgG

DGP IgG and DGP IgA

EMA IgA

AGA IgG

You might as well see if you can have the other tests done if the docs want to keep testing.

Also, any celiacs are low in K, D, B12, Fe, ferritin, zinc, Cu,Mg and vit A. They might be good to check out. also many celiacs have hypothyroidism; request a TSH (should be near a 1), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

Yes, you should definitely have your kids tested. If they are negative and they are continuing to eat gluten, they should be retested every couple of years because celiac disease can manifest itself at any time in a person's life. If they test negative but have some symptoms, it could mean that they have celiac disease but are not making enough autoantibodies to test as a positive yet. If that is the case, you might want to consider making them gluten-free for good health even without a diagnosis.... I did that with my boys.

Best wishes, and welcome to the club.

[NoGlutenCooties]

Hi Christina and Welcom to the forum!

 

Whether or not to get the biopsy is really a personal decision.  However, keep in mind that they check for other issues that may be going on - not just Celiac.  So there could be an added benefit to letting the doctor have a look around and run the tests on the biopsies.  Also... and this is just a thought... an official diagnosis may help down the road if/when you want to get your kids tested.  I know my doctor hesitated until I told her it runs in my family and then she was immediately completely on board.  I *think* that with some insurances, running a test because of a known family history can be the difference between the insurance company deciding to pay or not too.  Just a couple of things to consider...

[Christina.V]

Thanks for all this info! It's a lot to take in, but SO HELPFUL! I'm going to be e-mailing my doc to ask about these addl blood tests right now.

[Christina.V]

UPDATE: After reading all your responses, I decided to go ahead with the biopsy. That's scheduled for the 14th. It took 6 weeks to get on the Doc's schedule! Ah well... I have a couple more weeks to go until I go gluten-free.

 

Unfortunately, my 6 yr old daughter started complaining of nausea daily, so I had her TTG levels tested and sure enough, they came up positive. However, her Diamidated Gliadin IgA came back negative and the H Pylori IgG was negative as well. Not sure what that means exactly.

 

We go in for a follow up today to talk to her pediatrician, and then she'll see a specialist later this month. At this point, I'm thinking more bloodwork will be necessary for her...? I wrote down all the tests you mentioned, so I'm bringing that list with me today to see if we can get those out of the way and have the results BEFORE meeting with the specialist.

 

If you have any other advice for us, I'd love to hear it! Thanks in advance.

[Fenrir]

You definitely want the biopsy for two reasons:

#1- To confirm Celiac.

#2- Rule out autoimmine hepatitis.

 

The problem with the tTG testing is the only thing that really throws a monkey wrench in it is that if you have another auotimmune caused hepatitis it can be positive. Not to worry you but it is something you have to rule out and finding damage in the intestines can do that. Also, I was reading a study a month or so ago and it said about 5% of tTG tests are false positive and of those about 5% have autoimmune hepatitis. So, it is unlikely that it isn't celiac disease but without DGP antibody testing or a biopsy it cannot be ruled out.

[nvsmom]

Good luck with the biopsy. Make sure they take at least 6 samples, more is better.

 

Sorry to hear your daughter tested positive for celiac disease.    That tTG IgA test is specific to celiac disease about 95% of the time - only 5% of tTG IgA positives are caused by something other than celiac disease.  The other causes of a positive tTG IgA (that 5% of the time) is chronic liver disease, crohn's, colitis, diabetes, thyroiditis and a serious infection.... With you having celiac disease (a positive tTG IgA and AGA IgA definitely point that way) it is pretty likely that her positive test is caused by celiac disease too.

 

It really is not uncommon for some celiacs to have a falsely negative test along with their positive test - that's part of the reason they run so many. I would say more tests are warranted, and possibly a repeat of that negative test.

 

This is an interesting report, testing is discussed on pages 8-13: Open Original Shared Link

 

Good luck!

[GottaSki]

Let us know how your appointment today went and if it raised more questions -- usually does.

 

Hang in there

[Fenrir]

UPDATE: After reading all your responses, I decided to go ahead with the biopsy. That's scheduled for the 14th. It took 6 weeks to get on the Doc's schedule! Ah well... I have a couple more weeks to go until I go gluten-free.

 

Unfortunately, my 6 yr old daughter started complaining of nausea daily, so I had her TTG levels tested and sure enough, they came up positive. However, her Diamidated Gliadin IgA came back negative and the H Pylori IgG was negative as well. Not sure what that means exactly.

 

We go in for a follow up today to talk to her pediatrician, and then she'll see a specialist later this month. At this point, I'm thinking more bloodwork will be necessary for her...? I wrote down all the tests you mentioned, so I'm bringing that list with me today to see if we can get those out of the way and have the results BEFORE meeting with the specialist.

 

If you have any other advice for us, I'd love to hear it! Thanks in advance.

Chances are if she has a positive tTG she has Celiac.

 

Yeah, it took me a month to get in for my biopsy and there are liteally well over 100 GI docs around  here.

[Christina.V]

The appointment today was with my little one's pediatrician. No new information or tests. My biopsy is the 14th, followed by her appt with the specialist on the 22nd. The next few weeks will suck since my daughter doesn't feel well but hopefully we will be close to answers for both of us.

[GottaSki]

The appointment today was with my little one's pediatrician. No new information or tests. My biopsy is the 14th, followed by her appt with the specialist on the 22nd. The next few weeks will suck since my daughter doesn't feel well but hopefully we will be close to answers for both of us.

 

Got it!!

 

Hang in there