Dr said celiac wouldn’t respond quickly to gluten-free diet? Says endoscopy can’t diagnose?

[JenniK]

So i had a first meeting with a new gastro today who said a couple things that contradict all I have read before. What do you think about these statements?

1) He said that if someone responds quickly to gluten-free diet, the “it can’t be celiac. Celiac takes months for the villi to regrow before there would be any change.”

Me: “even diarrhea? Because after months of daily D, it stopped within a couple days of gluten-free…”

Dr: “No. it can’t change anything that fast.”

Me: “well then, I don’t have it. Because that’s how it happened.”

 

2) Endoscopy cannot accurately rule in or out Celiac after someone has gone gluten-free- even if they resume gluten. A gluten challenge is not recommended because “who knows how long it takes for the damage to show up? It might take a year. So after someone goes gluten-free, there is no way to prove if they have celiac or not. I’ll never be able to tell you…” 

I am not saying he is wrong (and he did talk/ him listen to me for a long time, which was nice) but it just goes against so much of what i have read. 

i am trying so hard to not be discouraged. I have to have the endoscopy and colonoscopy anyway, but to lose hope that it is going to help me solve the mystery of whether or not I need to continue living as a celiac is very disappointing.

 

[RMJ]

  On 9/9/2022 at 9:02 PM, JenniK said:

So i had a first meeting with a new gastro today who said a couple things that contradict all I have read before. What do you think about these statements?

1) He said that if someone responds quickly to gluten-free diet, the “it can’t be celiac. Celiac takes months for the villi to regrow before there would be any change.”

Me: “even diarrhea? Because after months of daily D, it stopped within a couple days of gluten-free…”

Dr: “No. it can’t change anything that fast.”

Me: “well then, I don’t have it. Because that’s how it happened.”

 

2) Endoscopy cannot accurately rule in or out Celiac after someone has gone gluten-free- even if they resume gluten. A gluten challenge is not recommended because “who knows how long it takes for the damage to show up? It might take a year. So after someone goes gluten-free, there is no way to prove if they have celiac or not. I’ll never be able to tell you…” 

I am not saying he is wrong (and he did talk/ him listen to me for a long time, which was nice) but it just goes against so much of what i have read. 

i am trying so hard to not be discouraged. I have to have the endoscopy and colonoscopy anyway, but to lose hope that it is going to help me solve the mystery of whether or not I need to continue living as a celiac is very disappointing.

 

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I think he may be partially right on each item.

1) It will obviously take time for villi to regrow so they can absorb nutrients.  But some of the cytokine reactions to ingested gluten should stop when no more gluten is eaten.

2) A gluten challenge and endoscopy can diagnose celiac disease if there is enough damage.  It just can’t rule it out if the biopsies are negative because the challenge was too short.  I know two weeks is the standard time recommended here, but in the original paper from which that time was taken, not ALL patients had damage that quickly, although the majority did.

Paper on gluten challenge kinetics

[mspat3]

  On 9/9/2022 at 9:02 PM, JenniK said:

So i had a first meeting with a new gastro today who said a couple things that contradict all I have read before. What do you think about these statements?

1) He said that if someone responds quickly to gluten-free diet, the “it can’t be celiac. Celiac takes months for the villi to regrow before there would be any change.”

Me: “even diarrhea? Because after months of daily D, it stopped within a couple days of gluten-free…”

Dr: “No. it can’t change anything that fast.”

Me: “well then, I don’t have it. Because that’s how it happened.”

 

2) Endoscopy cannot accurately rule in or out Celiac after someone has gone gluten-free- even if they resume gluten. A gluten challenge is not recommended because “who knows how long it takes for the damage to show up? It might take a year. So after someone goes gluten-free, there is no way to prove if they have celiac or not. I’ll never be able to tell you…” 

I am not saying he is wrong (and he did talk/ him listen to me for a long time, which was nice) but it just goes against so much of what i have read. 

i am trying so hard to not be discouraged. I have to have the endoscopy and colonoscopy anyway, but to lose hope that it is going to help me solve the mystery of whether or not I need to continue living as a celiac is very disappointing.

 

Expand Quote  

I understand what you are saying.  It is hard to not feel discouraged when the messaging from your doctor seems to conflict with everything else out there.  With my new doctor, I have wondered if he had some sort of technique, advanced knowledge, or some other superpower that allowed him to diagnose or rule-out Celiac Disease without a patient eating gluten before an endoscopy.   My symptoms responded the same way you describe yours having done when you stopped eating gluten.  I had experienced 10x a day pale diarrhea when I read about Celiac Disease and wondered if maybe that was the cause.  I cut out gluten that same morning, and instead of 10 trips to the bathroom, I only had two.  The next day, none.  Then I noticed other foods also began to affect me, like eggs, dairy, that made my stomach feel like it was burning, etc.   Maybe it's Celiac that I have.  Maybe it's IBS-D.  Maybe it's something else.  I still want to know what I have going on, and I want to understand why my doctor has never asked patients to consume gluten over a period of years, according to his office employee.  That tells me that it's not a result of any new techniques or studies.  

I think part of my frustration is that in my life (now 50), I have had several doctors who have not taken my health concerns seriously, and rather than do proper testing, my symptoms were written off as "stress" or my imagination.  I was once kept overnight for observation in a hospital in my early 20's for lower right abdominal pain that my family doctor felt was possible appendicitis.  The following morning, the surgeon handling my case came into my room and said that he was going to send me home because if it had been my appendix, it would have ruptured overnight or displayed other symptoms.  So, I asked him what is causing the pain, and he responded, "I'm not sure.  There is a large ovarian cyst on your right ovary that is about the size of an orange."   To which I responded, "Oh! Well, that's probably what is causing the pain", and he laughed at me and in a pandering tone said, "Silly girl, ovarian cysts do not cause pain."  Of course, they do.  I found another surgeon who removed it, and the pain stopped.  Another time, I went to the emergency room saying I was having trouble breathing and thought I was having an asthma attack (have had asthma since I was a child).  They did chest x-rays, tests, and sent me home after a doctor said there was nothing wrong with me, that it was probably just anxiety, and I should look into meditation and yoga. I then requested the radiologist's notes from the hospital, and the notes clearly said that the patient (me) had pneumonia.  My pneumonia was dismissed as anxiety, and I was discharged with no treatment.  Those are just two examples of not being taken seriously. 

So, having a gastroenterologist's office employee (not the doctor himself) keep giving me instructions that seem to not be common practice/advice makes me feel like I'm going to end up in another situation where my health concerns are not being taken seriously, and my results will not be valid/accurate.  That's why I'm eating gluten again against his office scheduler's instructions.  Sure, it'll be uncomfortable for a few weeks, but once the test is over, I can go gluten-free forever and hopefully know with some accuracy what I have going on. 

I know you said in another post that you have a few months before your endoscopy and some other tests to undergo.  So, thankfully you have time to decide whether you will start to consume gluten again.  I wish you luck with your decision and your future tests. 

[Scott Adams]

My take on:

1) For many celiacs, including myself, I noticed a very positive change in my symptoms within days--the most horrible symptom of nearly constant diarrhea quickly lessened right away, so I think your doctor is not correct in this assessment. Yes, it may take 1-2 years to fully recover and for many other symptoms to improve, but you should notice positive changes very soon after going gluten-free.

2) The Mayo Clinic does indicate that some level of damage should be seen after at least two weeks of eating 2 slices of wheat bread daily, and it is usually enough to make a diagnosis. This takes longer, or 6-8 weeks for blood tests.

If you have seen such positive changes after going gluten-free it sounds to me like you should stick with this diet. It's possible you have non-celiac gluten sensitivity, and there are no tests for this, but going gluten-free resolves most symptoms.