Have you experienced gaslighting by doctors?

[Gemz]

Hey everyone 👋 

I'm currently in the midst of investigsting celiac with my gastroenterologist. I have my scope booked in at the end of August.

It's been a long time coming... I've been trying to get to the bottom of this well over a year ago.

What prompted me was the fact my partner pointed out my excessive bloating for the last few years. So I started with getting a blood test for the antibody, I was already gluten-free for about two weeks but the doctor said it didn't matter. The blood test came back negative. I went back to eating gluten because I was like 'ah whatever' 

Fast forward this year, my GI symptoms were bothering me.. bloating, abdo pain, nausea, bowel movements 3+ daily - which were like slop and the smell was pretty bad.

So I went on a strict gluten-free diet for 10 weeks and everything disappeared. I felt like a new person! And then I thought, 'I need to investigate this again' ...I had changed GP's and this new one wanted me to do an antibody test even though I was gluten-free for 10 weeks and she said "it doesn't matter, if you're celiac, it will show up" lo and behold, the antibody was negative and I was going to give up until my celiac gene test came back as having detected the HLA-DQ2. That gave me momentum to advocate for my body to get further testing (just in case).

Here I am, currently waiting for my scope .. after doing the gluten challenge for 14 weeks now 😵‍💫 and let me tell you, it's been pretty awful. My GI symptoms are back at full force.

They did a 3-day stool test and also abdo x-ray last week. My GP said it's come back as normal and that my insides "are completely healthy" and if the scope comes back as normal and "you get the discomfort back again"  they want me to get investigated for endometriosis... And then begun asking me if my symptoms are just when I'm menstruating or close to it. (Side note: she asked me if I had an eating disorder and to stop being on a gluten-free diet as it is usually a fad these days).

I feel like I'm getting so much gas lighting. I told the GP that all my GI symptoms are a daily occurrence, it is not affected whether I'm menstruating or not. No one takes my symptoms seriously. Of course, there's a chance I'm NCGS.. but geeeez.

Has anyone else experienced this with health care professionals??

[trents]

Welcome to the forum, @Gemz!

Shame on your doctors and their ignorance.! It does matter whether or not you have been eating gluten free before being tested for celiac disease, whether it be the blood antibody test or the endoscopy/biopsy. We hear this same story from new members all too often!

The fact that you have an issue with gluten is indisputable since when you remove it from your diet your symptoms improve. The question is, do you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is, celiac disease damages the villous lining of the small bowel whereas NCGS does not. They share many of the same GI symptoms, however. There is no test for NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease.

Having explained all that, I wonder how complete the blood antibody testing was that you had done. Many docs will only order one or two antibody tests instead of a complete celiac antibody panel and so, some people who actually do have celiac disease are missed because the limited testing turns up negative. Do you have access to the specific tests that were run, the scores along with reference ranges for negative vs. positive, and can you post that information?

[RMJ]

It’s lucky that people with celiac disease can treat themselves, with a gluten free diet, since so many doctors don’t know what they’re doing when it comes to celiac disease.  

I hope you can get a clearcut diagnosis from the biopsy.  If not, just go gluten free anyway and get rid of your symptoms yourself!

[Gemz]

5 hours ago, trents said:

Welcome to the forum, @Gemz!

Shame on your doctors and their ignorance.! It does matter whether or not you have been eating gluten free before being tested for celiac disease, whether it be the blood antibody test or the endoscopy/biopsy. We hear this same story from new members all too often!

The fact that you have an issue with gluten is indisputable since when you remove it from your diet your symptoms improve. The question is, do you have celiac disease (aka, gluten intolerance) or NCGS (Non Celiac Gluten Sensitivity, aka, gluten sensitivity). The difference is, celiac disease damages the villous lining of the small bowel whereas NCGS does not. They share many of the same GI symptoms, however. There is no test for NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease.

Having explained all that, I wonder how complete the blood antibody testing was that you had done. Many docs will only order one or two antibody tests instead of a complete celiac antibody panel and so, some people who actually do have celiac disease are missed because the limited testing turns up negative. Do you have access to the specific tests that were run, the scores along with reference ranges for negative vs. positive, and can you post that information?

Thanks Trent

That's such a shame how common occurrence this is for people. I can only hope that one day NCGS can be diagnosed without trialling gluten-free diet first.

I didn't realise there were more than two antibody tests. Yes, I was ordered two. These being...

Gliadin-IgG <0.4 (N<7, P>10)
TTG-IgA <0.1 (N<7, P>10)

I'd be curious to see what this is like when I'm actually eating gluten. Alas, I am getting the biopsy and finally will end this madness that's been going on for a few years now.

5 hours ago, RMJ said:

It’s lucky that people with celiac disease can treat themselves, with a gluten free diet, since so many doctors don’t know what they’re doing when it comes to celiac disease.  

I hope you can get a clearcut diagnosis from the biopsy.  If not, just go gluten free anyway and get rid of your symptoms yourself!

Thanks RMJ, it sure is eye opening.

I plan to do this because I've noticed ridiculous results, despite the dietician telling me that I shouldn't have stopped gluten if I don't need to.

[trents]

@Gemz, 14 weeks should be plenty of time for the gluten challenge but make sure you are also eating enough gluten daily during that time. More recent guidelines call for the daily consumption of at least 10gm of gluten (the amount found in about 4-6 slices of bread) for at least 2 weeks before either the blood antibody test or the endoscopy/biopsy. So, however you get that gluten, don't skimp on it.

Just for your information, here is an article outlining the various antibody tests that can be ordered to detect celiac disease. The TTG-IGA is the most popular one and often the only one ordered by physicians. As the article explains, the IGA test scores can be falsely low if someone is IGA deficient so, a "total IGA" test should always be ordered to check for IGA deficiency. And some people, for whatever reason, have atypical immune system responses such that the IGA spectrum is not triggered. Those people may be caught with the IGG tests. The IGG tests also seem to be able to catch some who have already started the gluten free diet but haven't been on it for a terribly long time. So, at least your physician did something right in ordering the Gliaddin IGG test. But the IGG tests are not as specific for celiac disease as are the IGA tests.

Kudos to you for doggedly pursuing this in the right way through the gluten challenge. Keep us posted. And realize that, at the end of the day, the antidote is the same whether or not you have celiac disease or NCGS. Namely, a gluten-free diet. And some experts believe that NCGS can be a precursor to the development of celiac disease. 

 

Edited August 10, 2024 by trents