3 weeks gluten challenge for endoscopy?

[adm818]

I have been (mostly) gluten free for 5 years now after noticing a variety of symptoms all related to gluten. Occasionally, (maybe once a month), I would eat something with gluten, and my symptoms would all come back (major bloating, constipation, diarrhea, migraines, fatigue, brain fog, etc etc) (I’m also anemic). It would take days to feel like myself again, and I finally bit the bullet and scheduled an endoscopy after my sister started showing the same symptoms. 
 

My gastro doctor said he would be shocked if I didn’t have celiac, and because of my symptoms, he recommended a gluten challenge of 3 weeks prior to the endoscopy. I ate as much gluten as I could for the past few weeks and had the endoscopy today. After the procedure, he said everything looked normal and it looked like I don’t have celiac. We are now waiting on the results of the biopsy.

 

I am so surprised and am nervous that 3 weeks wasn’t long enough. It would be awesome to not have celiac, but I’m nervous that I should have done the gluten challenge longer. I don’t want to have false results.

Is 3 weeks long enough? Was anyone else diagnosed after that long?

[plumbago]

I can't really comment on much, but I was struck that although you've been gluten-free for 5 years (except for the past 3 weeks, eating gluten), you are anemic. Do you know more about that, why that is?

At any rate, it could be that if indeed you do have celiac disease, the 5 years was good enough to heal your gut, and it could be (see? lots of maybes, coulds and I-don't-knows) that you healed your intestines. I, um, really couldn't say. But good question. You could always get the genetic test. What did your celiac panel say? How's your B12 and D3 levels?

[adm818]

The doctor didn’t check my blood for celiac. He was so convinced when I spoke with him and wanted to jump straight to the endoscopy. I have been off and on anemic for as long as I can remember and sometimes have to supplement with iron. Maybe I will look into the genetic test. I went against my gut in doing a gluten challenge for longer, but I was trying to trust the doctor. I just hope that wasn’t a mistake.

[plumbago]

I would think (but, again, don't know for certain) that you could have cured your celiac disease, already. There may be no way for a gastro to know if someone has celiac disease by looking at a healed gut. You see the point I'm trying to make?

You may want to get the blood test now (especially when still eating gluten). Your doctor should have, without question, run a celiac panel before proceeding to endoscopy.

Among the good news items after your endoscopy is that he/she didn't see a bleed from an ulcer or something in your stomach, which could cause the anemia and is indeed one of the commonest causes. He/she would probably want to do a colonoscopy to completely rule out GI causes of anemia.

It could be that your are female and still menstruating which is also a very common cause of anemia among women.

[adm818]

I’m also wondering - can the endoscopy findings look normal but the biopsy show celiac? 

[plumbago]

Just now, adm818 said:

I’m also wondering - can the endoscopy findings look normal but the biopsy show celiac? 

Yes, I should think so. We've had arguments on this forum before about doctors being able to tell if there's celiac disease before getting the biopsy back, so yes, you are correct. Hang tight.

[trents]

50 minutes ago, adm818 said:

I have been (mostly) gluten free for 5 years now after noticing a variety of symptoms all related to gluten. Occasionally, (maybe once a month), I would eat something with gluten, and my symptoms would all come back (major bloating, constipation, diarrhea, migraines, fatigue, brain fog, etc etc) (I’m also anemic). It would take days to feel like myself again, and I finally bit the bullet and scheduled an endoscopy after my sister started showing the same symptoms.

 

Your inconsistency with gluten intake over the five year period may or may not have prevented sufficient healing of the villi to invalidate the endoscopy. However, three weeks of being back on daily regular amounts of gluten should have been enough to generate a valid endoscopy/biopsy.

Several things to consider. First, what the doctor can see with the naked eye during the scope is not conclusive. It may be limited by resolution limitations of the camera, especially if he isn't using the latest equipment. The biopsy will be much more reliable in that regard.

Second, not every doctor does a thorough job with regard to the biopsy. Four samples taken from various portions of the small bowel are recommended to ensure a valid test result.

Third, you may have some gluten-related disorder that does not damage the small bowel lining.

As far as getting a genetic study done, that would only demonstrate whether or not you have the potential for developing celiac disease but even if you do have the genes that does not guarantee you have active celiac disease or that you will develop it. Many people with the genes never get celiac disease. It takes some kind of triggering stress event to move from potential to active.

Having said all that, if your biopsy is negative for whatever reason, I would still encourage you to seek a full celiac antibody blood test panel. If the doc is unwilling, you can order a home test kit for around $100 USD. You would need to be consuming gluten for 8 weeks daily for that to be valid.

[GFinDC]

There was a study published not long ago that found users of medications may not show positive blood work for celiac disease.  So if you are taking one of those medicines the blood tests may be invalid even with a full gluten challenge.

https://pubmed.ncbi.nlm.nih.gov/28462884/

[JenniK]

20 hours ago, plumbago said:

I would think (but, again, don't know for certain) that you could have cured your celiac disease, already. There may be no way for a gastro to know if someone has celiac disease by looking at a healed gut. You see the point I'm trying to make?

You may want to get the blood test now (especially when still eating gluten). Your doctor should have, without question, run a celiac panel before proceeding to endoscopy.

Among the good news items after your endoscopy is that he/she didn't see a bleed from an ulcer or something in your stomach, which could cause the anemia and is indeed one of the commonest causes. He/she would probably want to do a colonoscopy to completely rule out GI causes of anemia.

It could be that your are female and still menstruating which is also a very common cause of anemia among women.

Can we talk about what this idea of healing the gut actually means for celiacs?

This is what I surmise may have happened to me, but I don’t know what it means as far as what changes to make for the rest of my life.  I have been gluten free for about 2.5 - 3 years, and almost all of my issues completely cleared up. Now I am mid diagnosis and doing a challenge. Diarrhea was always my main symptom, and 2.5 weeks in, D has not shown up at all. My belly did respond at first with the pre-gluten-free “ibs ache”, but nothing ever happened. That has been a huge surprise and relief! 
 

I AM seeing effects/ changes since adding the wheat/ gluten though, just not what I was expecting. My immune system flared, with canker sores (healed now), a return of daily joint pain which dr thought pre-gluten-free was rheumatoid arthritis, returning nerve pain thought to be shingles damage, return to blurry vision, and (the strangest!) new, leaky, wet ear wax which i have never had, but now have every morning in both ears. 
 

But, my gut seems pretty happy, and to tell you the truth, my mood and my energy are both much better than I expected. (I am realizing that i need more carbs than I get on my gluten-free diet.) IF my gut healed over the past couple years, will it stay healed? Or is it a time bomb? And when you say “cured your celiac”, does that mean a person can go back to acting like a non-celiac? (I don’t really think this is me, bc of the arthritis pain returning, but i want to understand.)

two more weeks until I see the GI for the first time...

[plumbago]

Yes, as I say (re: Trents' comment), there are arguments about how much emphasis to put on the scopist's eye. If biopsies are taken from healthy tissue, but the gastro saw damage, the report from pathology could result in a false negative. But a gastro who sees damage will be taking biopsies from the tissue he/she sees as damaged. IMO, you need both the gastroenterologist's eye and the pathology. But for sure the gastro can in fact see damage oftentimes.

The biopsy tells you more about the damage, if any, in general, and in particular any damage not visible to the gastroenterologist.

1 hour ago, JenniK said:

Can we talk about what this idea of healing the gut actually means for celiacs?

Absolutely! You will likely get a range of opinions!

 

1 hour ago, JenniK said:

And when you say “cured your celiac”, does that mean a person can go back to acting like a non-celiac?

You will likely not get a range of opinions, but some definitively distinct ones! In my opinion, I would say no that does not mean a person can go back to acting like a non-celiac.