Biopsy?

[rimsch]

Hello,

 

there is probably no "right" answer to my question but since this forum is full of experienced celiacs I thought I could give it a try.

 

As I already explained in another topic ( https://www.celiac.com/forums/topic/108035-interpretation-of-test-results/ ) I did have a blood test for gluten-intolerance and it was partly positive. (One pretty specific test was positive, the others were negative.)

 

The problem is: After I took the blood test I stopped eating gluten and now I'm gluten-free for about 38 days.

 

Since my blood results weren't that clear I would really like to make biopsy. BUT: If i do the biopsy and for example start consuming gluten again for 4 weeks it would completely destroy the diet I already started and for my gluten-free-diet there would be a delay of about 2,5 months: ~ 1,5 months of the diet I already started + ~ 1 month of consuming gluten...

 

So, what's your opinion? Of course it would be great to be completely sure about the diagnosis but on the other hand I'm thinking that I would have to do a diet anyway: (Partly) positive blood results + negative biopsy probably wouldn't put me off following this "gluten-theory", so that I still would have to make a diet...

 

Probably the strongest argument for  a biopsy I can think of is the follow: If I dont do the biopsy and have no absolute certainty about being a celiac it would be a desaster if I would get constantly glutened "secretely" during my diet by eating something that unexpectedly contains gluten. Then there could be the case of me being a celiac without seeing real improvement of my symptoms during a diet...

 

What also bothers me is the fact, that a doctor told me that there are celiacs who felt first symptom improvement 6-12 months after the start of their diet. I imagine it pretty hard to be on a gluten-free diet without a waterproof diagnosis and not feeling any real improvement for more than 6 months..

 

 

Anyway, it all comes to one simple question.

After reading about my situation and my thoughts about it: Would you advise me to start eating gluten again so that I can do a biopsy? Or would prefer staying on the gluten-free diet?

 

Thanks in advance! I really appreciate your effort!

 

Best regards,

rimsch

 

 

Edit:

Oh and a last aspect:

Since gluten-intolerance causes nutrient deficiency: I'm somehow concerned about the danger of damaing something permanently by intterupting the diet. I mean, if for example my eye problems, more concretely my lid margin inflammation/dry eyes, are caused by processes that are based on a gluten-intolerance it can't be good if I extend the "time of damage" by going back to gluten again.

 

Is this a considerable concern or am I too concerned?

[LauraTX]

With only being in the gluten-free diet for 38 days, I would go ahead and do the gluten challenge for a proper biopsy if you can handle it.  Sometimes when people are really severely damaged, it still can show, but it would be a big waste of time to do a biopsy with the current diet and it be a false negative.  Having a solid diagnosis is something that you have to judge how much it means to you...  if you are going to have children it can really help them with knowing your health history solidly.  You are correct that feeling better on a gluten-free diet can take a long time, and if you feel your heart wouldn't solidly be in it, it sounds like you would be happier with a solid diagnosis.  

 

Check out this page at the University of Chicago for gluten eating recommendations prior to endoscopy:  Open Original Shared Link

They recommend 2 weeks for an endoscopy.  If you want to start now and schedule in an endoscopy, or wait to start until you get an endoscopy scheduled, either way just make sure you do it thoroughly.  Some places recommend longer.  If you want to be extra sure your efforts will not be in vain, you can do that.  

 

You also don't have to contaminate your kitchen or anything like that.  You can eat out, buy some premade items like pasta frozen dinners, donuts, just gluteny bread for sandwiches, that way any gluten-free kitchen changes you may have made will not be reversed.

 

There are some people who cannot handle a gluten challenge because their symptoms are too bad.  It is better to do it now early on in your healing than to want to do it later, but if for some reason you can't handle the full period consuming gluten the doctor can schedule the endoscopy sooner. 

[GottaSki]

I agree with Laura for the most part.

I'd suggest one slice of glutenous bread per day for two weeks prior to your endoscopy...so schedule it as soon as possible and then enjoy a really good slice of bread each day or half a grilled cheese until the endoscopy.

I did not read your other thread, but if any of the celiac antibody tests were positive and you have any of the numerous symptoms of celiac disease, in my opinion, the endoscopy with 6-8 samples of the small intestine is warranted.

Hang in there

Edited...the gliadin test you were extremely high for should not be dismissed. Make sure they run both AGA and DGP antibody tests on you...these can be drawn on the same day as your endoscopy.

[NatureChick]

Biopsy results vary in so many ways that there really isn't any way to guarantee accuracy. Some doctors don't know what they are doing and don't sample enough spots for biopsy or take samples from the wrong areas, plus villii damage can be patchy. Studies have shown that some people with celiac don't have villii damage right away, making a gluten challenge of any length somewhat meaningless if you end up with a negative result. And with a lot more margin for error in endoscopy/biopsy results, false negatives are much more common than in blood tests. Just something to keep in mind before forging ahead.

Endoscopies normally are performed to see how much damage there is so that you can go back in a year, do another endoscopy, and make sure that healing has occurred. Otherwise, if you already had a positive blood test, the only reason would be to give your doctor an opportunity to charge for a procedure. But in a case like yours, where the blood test isn't entirely reliable, a biopsy is only going to help if it is positive, but still won't completely rule out gluten as a problem if it is negative.

When it comes to a gluten challenge, I don't think I could do it, even if I were only a few weeks in. In your case, I might give it a try to see if you start experiencing any symptoms. If it is bearable, stick with it, or if not, drop it.

Some people feel the need to have a 100% positive diagnosis of celiac in order to stay on the gluten-free diet. For others, the symptoms from gluten are so obvious that the only real reason for a diagnosis might be to get access to additional medical services or tax breaks, depending on your country and health-coverage type. There are some potential negatives to getting a diagnosis as well, for example, in the U.S., higher insurance rates if you are privately insured, or possible denial of access to some plans which may end up being more expensive than can be offset by tax deductions for gluten-free food.

But most people who have celiac do notice at least some effects of going gluten free in the first few days, even if some major symptoms linger for months. If it were me and I had been gluten-free for 38 days without noticing even one aspect of my health changing (even if it was small symptoms that you previously hadn't realized could possibly be related to gluten), then I'd probably start considering that your health problems might have another cause. If you already feel noticeably better on a gluten-free diet, then that already means at least a diagnosis of non-celiac gluten sensitivity (presuming it isn't just placebo effect, of course).

When it comes to staying gluten-free even if you don't have noticeable symptoms, 99% of the battle is educating yourself about how to avoid the potential hazards for accidental glutenings or cross contamination. There are plenty of people who take a lot more risks than I would ever dream of taking, and though I do have noticeable reactions to even trace amounts, often they are small things that I'm guessing that many people wouldn't even notice. 

But if you do opt for a gluten challenge, I recommend eating lots of English muffins, sour-dough bread, soft pretzels, subs, and croissants - the things I miss most for which there don't seem to be a good gluten-free substitutes.

[rimsch]

Thanks for all your help!

 

 

 

 

But most people who have celiac do notice at least some effects of going gluten free in the first few days, even if some major symptoms linger for months. If it were me and I had been gluten-free for 38 days without noticing even one aspect of my health changing (even if it was small symptoms that you previously hadn't realized could possibly be related to gluten), then I'd probably start considering that your health problems might have another cause. If you already feel noticeably better on a gluten-free diet, then that already means at least a diagnosis of non-celiac gluten sensitivity (presuming it isn't just placebo effect, of course).

 

 

 

I can't really be sure about that. I believe that some of the symptoms have improved. But the placebo effect is empirically proven and I also know how great I would feel about having a gluten-intolerance (finally a solution for my problems): I don't trust my own judgement on this issue (at least not after only 38 days of gluten-free dieat and vague improvements, especially since the improvement is somehow vague. Additionally one possible good indicator is gone since I stopped consuming lactose half a year ago (since I did that I stopped having regular and serious indigestions). And the most important thing is that the major health problem I have is lid margin inflammtion on both eyes. In my case this is basically caused by clogged glands (meibomian glands) due to an overproduction of meibom secretion (which is closely connected to the normal sebum production of the skin). This means that probably the normalization of meibomian-secretion-production could take some time to really show results since the glands would still be clogged.

 

Anyway...I guess I'm gonna think about in the next days and then I will decide. I tend to do the gluten-challenge so that a biopsy can be done.

 

 

Edit:

There's another question: A doctor told me that after for example being on a gluten-free diet for 5 months it would be necessary to eat gluten again for 12 weeks to make a biopsy. Considering what you wrote (and also the university of chicago) wrote it seems to me that the 2-4 weeks gluten-challenge before an endoscopy are a general advise no matter how long you were gluten-free?! Is that right?

[rimsch]

Hello,

I just would like to push this thread a little bit.

 

Maybe no one saw my last question because I edited too late!?

 

 

 

Edit:

There's another question: A doctor told me that after for example being on a gluten-free diet for 5 months it would be necessary to eat gluten again for 12 weeks to make a biopsy. Considering what you wrote (and also the university of chicago) wrote it seems to me that the 2-4 weeks gluten-challenge before an endoscopy are a general advise no matter how long you were gluten-free?! Is that right?

 

 

I would be really thankful for an answer!

 

 

Best Regards,

rimsch

[GottaSki]

Hello,

I just would like to push this thread a little bit.

 

Maybe no one saw my last question because I edited too late!?

 

 

 

 

 

I would be really thankful for an answer!

 

 

Best Regards,

rimsch

 

IMO twelve weeks is better for all tests..but the University of Chicago and other leading celiac facilities have sited peer reviewed studies that took samples after a two week challenge that did show damage to the villi.

 

Here is the problem as I see it...in those studies there were likely the best celiac disease docs performing the biopsies...we see far too much variation within actual GIs out there.  6-8 samples is imperative for a short challenge...again in my opinion.

 

In my family if and when the two remaining NCGIs decide to challenge they will challenge for twelve weeks and get all blood and biopsies done at the same time.

 

Hope that helps...hang in there

[rimsch]

Hello,

 

just wanted to thank you for your answer. Hadn't had the time to visite this site, so I just saw your post.

 

However, I already arranged an appointment for a biopsy. Since the doctor has some vacation time during the middle of august, I'm gonna have the biopsy in about 2 months from now. This means that I will have had an 8-week gluten-challenge before the biopsy which should be enough - especially because it isn't like I was on a gluten-free diet for a really long time now.

[GottaSki]

Hello,

 

just wanted to thank you for your answer. Hadn't had the time to visite this site, so I just saw your post.

 

However, I already arranged an appointment for a biopsy. Since the doctor has some vacation time during the middle of august, I'm gonna have the biopsy in about 2 months from now. This means that I will have had an 8-week gluten-challenge before the biopsy which should be enough - especially because it isn't like I was on a gluten-free diet for a really long time now.

Sounds like a good plan....let us know how it goes