Going Gf Before Biopsy

[Nantzie]

Today I went to my first doctor's appt since finding out about celiac. She seemed to know a little bit about it, but not much. She had me do blood tests. But she has already done a referral to gastro for an intestinal biopsy. She said that celiac is hard to diagnose with blood tests, so if it's suspected they do a biopsy.

She did say that I should try the gluten free diet for a short amount of time. From what I've seen from other people on this board though, if you've got it, once you're gluten-free, you get so sick from gluten that you'd rather not have a diagnosis than have to eat gluten again.

But I'm wondering if I go gluten-free before the biopsy, can I get a false negative biopsy? Or does it take such a long time to heal the damage that it probably wouldn't matter if I went gluten-free before the biopsy?

She said that they contact the insurance for approval before they make the appt, so it will be about 10 days to two weeks before they even call to set my appt. So I'm guessing the very earliest I'd be having it done would be Nov sometime. But in my past experience it seems like it takes forever to get an appt for stuff like that, so maybe longer than that even.

Nancy

[KaitiUSA]

No you should not go gluten free before the biopsy! This can make the results useless because damage will start to heal. You need to be eating gluten(about equal to 2-3 pieces of bread a day for 3 months prior to testing)

Also, blood tests are accurate if you get a complete panel done. There are some pretty specific tests in that panel.

A biopsy can rule celiac in but not out. If it is in beginning stages it may show no damage yet or there could be sporadic damage that a doctor can easily miss because they don't sample every part of the intestines and the intestines are huge.

After I was diagnosed and went gluten free I became very sensitive to the slightest amount. Some people do not have increased sensitivity but a majority of people I have seen have become more sensitive. I get really sick for about 2 weeks and am not really back to normal until a month after...and thats even for the smallest amount.

[shirley ann]

Today I went to my first doctor's appt since finding out about celiac.  She seemed to know a little bit about it, but not much.  She had me do blood tests.  But she has already done a referral to gastro for an intestinal biopsy.  She said that celiac is hard to diagnose with blood tests, so if it's suspected they do a biopsy. 

She did say that I should try the gluten free diet for a short amount of time.  From what I've seen from other people on this board though, if you've got it, once you're gluten-free, you get so sick from gluten that you'd rather not have a diagnosis than have to eat gluten again.

But I'm wondering if I go gluten-free before the biopsy, can I get a false negative biopsy?  Or does it take such a long time to heal the damage that it probably wouldn't matter if I went gluten-free before the biopsy? 

She said that they contact the insurance for approval before they make the appt, so it will be about 10 days to two weeks before they even call to set my appt.  So I'm guessing the very earliest I'd be having it done would be Nov sometime.  But in my past experience it seems like it takes forever to get an appt for stuff like that, so maybe longer than that even. 

Nancy

<{POST_SNAPBACK}>

I was just diagnosed also.I just went to my gast. Dr Monday he also wants a biopsy done. I go in Thursday Oct. 13. He told me not to eat gluten-free until after my biopsy so he can get a true reading of what I've been going through. It was very upsetting because I have had the best last 3 days then I have had in 2 years. But I understand his point. I hope this helps.

[AmandaD]

Hi - I'm a newly diagnosed Celiac who has been treated/diagnosed at the UW Hospital in Wisconsin - It's one of the leading gastroenterology departments in the country.

a) The TTG antibody blood test detects Celiac about 98 percent of the time. It's highly accurate (I think your doctor doesn't understand that actually this test...I think it's been developed a bit better recently...is very sensitive to the Celiac antibody)

If the TTG test comes back positive, they'll want to do an endoscopy - which was totally painless...I was knocked out...they'll take some biopsies of the tissue that will tell them if your villi are blunted or flat and will help them make the diagnosis of Cel. Sprue.

c) Never go gluten free or even try the diet until you get a diagnosis from your doctor. You could skew the results from coming out accurate...this information is according to my support group here in Madison.

d) Listen to what your doctor says; do not try to self-diagnosis this condition; and try to talk to your doctor about getting in as soon as you can -particularly if you're having any kind of uncomfortable symptoms.

I was persistent with my doctor - but was also a patient and really listened to what they said. It helped a lot...Amanda

Today I went to my first doctor's appt since finding out about celiac.  She seemed to know a little bit about it, but not much.  She had me do blood tests.  But she has already done a referral to gastro for an intestinal biopsy.  She said that celiac is hard to diagnose with blood tests, so if it's suspected they do a biopsy. 

She did say that I should try the gluten free diet for a short amount of time.  From what I've seen from other people on this board though, if you've got it, once you're gluten-free, you get so sick from gluten that you'd rather not have a diagnosis than have to eat gluten again.

But I'm wondering if I go gluten-free before the biopsy, can I get a false negative biopsy?  Or does it take such a long time to heal the damage that it probably wouldn't matter if I went gluten-free before the biopsy? 

She said that they contact the insurance for approval before they make the appt, so it will be about 10 days to two weeks before they even call to set my appt.  So I'm guessing the very earliest I'd be having it done would be Nov sometime.  But in my past experience it seems like it takes forever to get an appt for stuff like that, so maybe longer than that even. 

Nancy

<{POST_SNAPBACK}>

[Carriefaith]

Going gluten free can lead to false negative results on the biopsy and the blood tests. It is best to wait and start the gluten-free diet until after the blood tests and biopsies are done. I started the gluten-free diet the day of my biopsy

From what I've seen from other people on this board though, if you've got it, once you're gluten-free, you get so sick from gluten that you'd rather not have a diagnosis than have to eat gluten again.

That is true in a lot of cases. There are a lot of people, including myself, that can get extremely severe reactions from gluten ingestion. There is no way that I would go back to eating gluten now! I think that my reactions may be especially bad sometimes because I also have a wheat allergy in addition to celiac.

[tiredofdoctors]

I asked my GI doc about going gluten-free prior to the biopsy. He said the cells of the intestinal villi turn over so quickly that he didn't want to give them a chance to heal prior to the biopsy -- and to NOT go gluten-free until afterward.

[AmandaD]

KaitiUSA - I'm wondering about what you've said about blood tests being accurate if you get "a complete panel"...some of the latest information I've been told by my gastro doctor is that the newest TTG test is almost always all that's needed to detect Celiac...she explained that it's now been developed to be so highly specific that the other tests are evenutally going to be unnecessary...is this something you've heard at all?

Amanda

No you should not go gluten free before the biopsy! This can make the results useless because damage will start to heal. You need to be eating gluten(about equal to 2-3 pieces of bread a day for 3 months prior to testing)

Also, blood tests are accurate if you get a complete panel done. There are some pretty specific tests in that panel.

A biopsy can rule celiac in but not out. If it is in beginning stages it may show no damage yet or there could be sporadic damage that a doctor can easily miss because they don't sample every part of the intestines and the intestines are huge.

After I was diagnosed and went gluten free I became very sensitive to the slightest amount. Some people do not have increased sensitivity but a majority of people I have seen have become more sensitive. I get really sick for about 2 weeks and am not really back to normal until a month after...and thats even for the smallest amount.

<{POST_SNAPBACK}>

[KaitiUSA]

KaitiUSA - I'm wondering about what you've said about blood tests being accurate if you get "a complete panel"...some of the latest information I've been told by my gastro doctor is that the newest TTG test is almost always all that's needed to detect Celiac...she explained that it's now been developed to be so highly specific that the other tests are evenutally going to be unnecessary...is this something you've heard at all?

Amanda

The tTG is needed and that is one of the tests in the complete panel. However, each test does play a role because the tTG is more towards detecting damage so if there is not damage yet there is a possibility that can come back negative but yet you still may have it. Don't get me wrong the tTG test is VERY accurate and the best blood test for celiac.

The IgA and IgG,less specific of course, but they are usually the first things to be flagged with a gluten reaction in the body.

The EMA is another pretty specific one for celiac.

And last the total serum IgA will rule out IgA deficiency...if this one is low then the IgA test would not be accurate.

So each one kind of owns its piece to the puzzle and the complete panel has been very effecient so that's why I recommend a complete panel rather then just one test.

The tTG is a great test however and what I have heard is it is going to take the place of biopsies for diagnosing kids...so I am for the blood tests. Biopsies can't even rule it out so the only benefit would be to see how much damage,if any, that you have at that point.

[Nantzie]

Crud. I had a feeling you guys were going to say that... I was hoping to start feeling better.

I wrote down all of the tests that Kaiti usually posts when recommending what tests to ask for. My doctor hadn't even heard of most of them, and had no idea what the tTG was.

She did take my list and looked them up on her computerized lab form and was just going to check them off to test for and was only able to find a couple of them. She said that there are tests that their medical group doesn't even do, and would have to find a lab that does them. I told her that I don't mind that, but then she said that the biopsy is the ultimate test for it anyway so the blood tests may not even show anything.

I knew she wasn't terribly informed, but it looks like she kind of has everything backwards as far as blood vs. biopsy.

When I talk to the gastro department, I'm going to ask about at LEAST getting the tTG. If they won't do it or don't know what I'm talking about, I'm going to maybe do one of the mail-order tests just for my own information.

In fact, maybe I should just do that anyway... Any recommendations for labs? I've heard of Enterolab and York, but is there one that everyone feels is accurate and dependable? Or one that doctors tend to take more seriously than another?

Now that I know that I can't go gluten-free until after my biopsy, I'm going to just start taste-testing some gluten-free stuff. Maybe go to Whole Foods and check out their bakery. But still eat a regular gluten-filled diet. I got a Thai Kitchen thing the other day that was really good.

Nancy

[Carriefaith]

She did take my list and looked them up on her computerized lab form and was just going to check them off to test for and was only able to find a couple of them. She said that there are tests that their medical group doesn't even do, and would have to find a lab that does them.

Yeah some labs don't do certain tests anymore and some don't do them at all. At the hospital here, the IGG test is apperently the old celiac blood test and they do the tTg blood test now. However, I believe the IGG test can be done if requested. Also, I don't believe that they do gene testing here.

I got a Thai Kitchen thing the other day that was really good.

Thai Kitchen is great. Pad Thai is my favorite. I have cooked some of their recipes in the recipe section and they were really good!

[KaitiUSA]

Nancy

One of the best labs, if not the best in the U.S, for celiac blood testing is Prometheus Labs in California. You can find the complete panel they run for celiac on their website as well but I am listing it below. It was a bit on the expensive side but well worth it. I also had the celiac gene test done by them as well which showed I had one of the main genes for celiac(HLA-DQ2)

Most labs will do at least some of those tests...but upon request they should be able to do them even if it requires sending them to a different lab that does but I don't know.

A good alternative is the Enterolab.

Also, that doctor didn't know what the tTG test was !!!!! wow..another ill informed about celiac doctor...what a surprise....9 out of 10 doctors are not well informed. well I don't know if you got the full tests that I listed but here they are just in case:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG)

Total Serum IgA

Some of course are better tests then the others but as I said..I think they are at least of some value. The IgG is the least accurate and the tTG the most accurate.

[Nantzie]

Yea, I'm hoping the gastro department knows more about it than this doctor did. I'm going to wait to talk to them before I write the whole lot of them off. If the gastro dept isn't at least as well informed as a 35-year-old housewife who's done a month's worth of research, I'm not going to put too much stock into a negative diagnosis if that's how it comes out.

If I can't get at least a tTG and and EMA, I'm going to order a tTG from York, because it's only $99.

Then if with all of the tests they do, they come back as negative for celiac, I'm going to order Enterolab with the genetic testing too. But I'd rather wait to see what these doctors come up with before I pay the $350 for Enterolab.

But then, if I do the Enterolab now, I'll at least know, and not have to drag this out into next year if these doctors say my results are inconclusive. It's one of those things -- sometimes time is more valuable than money. Geez, and I thought waiting three weeks for TODAY'S appointment was hard...

I looked up Prometheus and was able to find the information on the tests, but didn't see where I could order it directly through them. Is this something where you order it through your doctor; one of those labs that my doctor said that she'd have to find in order to run the tests she didn't see on her check-box lab form?

I did pick up the Pad Thai one too. I may just have to try that tonight. Hubby's playing soccer, so it's a good time to try something new.

Nancy

[Guest nini]

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