Diagnosed with celiac a little too soon

[Ruu]

  On 9/20/2021 at 9:59 PM, Onegiantcrunchie said:

Hi Ruu. The endoscopy/biopsy specifically looks for damage - the gluten causes the damage. That's why they have you do the gluten challenge before the biopsy, because if you cut gluten out before, there's a chance that any damage there was could heal before the biopsy, leaving nothing to find. So, a coeliac case might look like a non-coeliac.

I'm guessing your doctor was talking about the fact that when they biopsy, they're only taking one little part, and that part may happen to be a part that doesn't show damage, when other parts that they haven't taken, do. I think that's why your doctor said this wouldn't be an actual diagnosis - it's just not certain enough? I hope I worded that properly!

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Hey, Onegiantcrunchie (lol). I am well informed on the purpose of the gluten challenge and endoscopy, but thank you for taking the time to explain for those who may be lurking. 

And no, my doctor was referring to the early stage of celiac where there is yet damage to be shown (damage from celiac doesn't just happen one day, it is progressive and damage happens over time). I'm not concerned about my procedure/diagnosis, I was just curious if there was any way to detect celiac in the early stages before damage is seen in the endoscopy. The only thing I've found is looking for gluten reactive CD4-T cells which isn't even a standard test (yet...)

[Onegiantcrunchie]

  On 9/21/2021 at 6:36 PM, Ruu said:

Hey, Onegiantcrunchie (lol). I am well informed on the purpose of the gluten challenge and endoscopy, but thank you for taking the time to explain for those who may be lurking. 

And no, my doctor was referring to the early stage of celiac where there is yet damage to be shown (damage from celiac doesn't just happen one day, it is progressive and damage happens over time). I'm not concerned about my procedure/diagnosis, I was just curious if there was any way to detect celiac in the early stages before damage is seen in the endoscopy. The only thing I've found is looking for gluten reactive CD4-T cells which isn't even a standard test (yet...)

  On 9/21/2021 at 6:36 PM, Ruu said:

Hey, Onegiantcrunchie (lol). I am well informed on the purpose of the gluten challenge and endoscopy, but thank you for taking the time to explain for those who may be lurking. 

And no, my doctor was referring to the early stage of celiac where there is yet damage to be shown (damage from celiac doesn't just happen one day, it is progressive and damage happens over time). I'm not concerned about my procedure/diagnosis, I was just curious if there was any way to detect celiac in the early stages before damage is seen in the endoscopy. The only thing I've found is looking for gluten reactive CD4-T cells which isn't even a standard test (yet...)

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ahh sorry Ruu, I think you even mentioned that you work in medicine before, didn't mean to patronise you! I don't know if there's an early test other than the usual ones, what about the test looking for the coeliac gene? Although it wouldn't confirm it's active would it but it might give you an earlier heads up than the ones that require you to be eating gluten to be accurate?

But to be honest every time I've heard the coeliac blood test is 97% accurate, I always ask what the other 3% could mean then, if not coeliac, and I've never really got a straight answer. I kind of take that to mean there's no alternative really..?

[Ruu]

  On 9/21/2021 at 6:50 PM, Onegiantcrunchie said:

ahh sorry Ruu, I think you even mentioned that you work in medicine before, didn't mean to patronise you! I don't know if there's an early test other than the usual ones, what about the test looking for the coeliac gene? Although it wouldn't confirm it's active would it but it might give you an earlier heads up than the ones that require you to be eating gluten to be accurate?

But to be honest every time I've heard the coeliac blood test is 97% accurate, I always ask what the other 3% could mean then, if not coeliac, and I've never really got a straight answer. I kind of take that to mean there's no alternative really..?

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No worries! And that's actually a good question... I read other people's experience on what the other 3-5% could be (like hashimoto) but I haven't found any studies on that. We definitely need some more research for autoimmune diseases. 

[Scott Adams]

We've summarized tons of articles over the years on celiac disease's connection with other autoimmune disorders:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/

and here are the ones on thyroid issues:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

[Ruu]

Update: I had my endoscopy last week and immediate went gluten free afterwards. I felt better for 4 days. I slept better, no waking up at 4 am anymore, but on the 5th day I became nauseous again on & off. Then my gastro contacted me and told me that the biopsy (10 samples) came back clear. No evidence of celiac and my stomach and duodenum looked healthy. He told me to continue eating gluten and will retest in a month.

I'm at a loss. If its not celiac, I don't know what is causing my problems and if I should avoid gluten or even cross contamination. Oh well...

[trents]

I'm guessing you have NCGS (Non Celiac Gluten Sensitivity) and after four days you got "glutened" somehow. The symptoms of NCGS are largely the same as celiac disease but there is no damage to the villi, hence there would be no antibodies produced and the biopsy would also be negative. There is quite an education curve in learning to eat gluten free and typically there are mistakes made in the learning process.

Edited October 7, 2021 by trents

[Ruu]

  On 10/7/2021 at 3:38 PM, trents said:

I'm guessing you have NCGS (Non Celiac Gluten Sensitivity) and after four days you got "glutened" somehow. The symptoms of NCGS are largely the same as celiac disease but there is no damage to the villi, hence there would be no antibodies produced and the biopsy would also be negative. There is quite an education curve in learning to eat gluten free and typically there are mistakes made in the learning process.

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Yes, I hadn't made my home completely gluten free because I wanted to wait for the biopsy results, so you're probably right. I did have a positive TTG-IGG test, however, and its my understanding NCGS cannot be detected by a test. My gastro said we may have caught it early.

[trents]

  On 10/7/2021 at 3:45 PM, Ruu said:

Yes, I hadn't made my home completely gluten free because I wanted to wait for the biopsy results, so you're probably right. I did have a positive TTG-IGG test, however, and its my understanding NCGS cannot be detected by a test. My gastro said we may have caught it early.

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What your gastro doc said makes sense. It is also possible that the biopsy samples he took were from areas not yet affected. Villi damage can be patchy and some docs don't reach into various areas when taking the samples.

[Onegiantcrunchie]

  On 10/7/2021 at 3:45 PM, Ruu said:

Yes, I hadn't made my home completely gluten free because I wanted to wait for the biopsy results, so you're probably right. I did have a positive TTG-IGG test, however, and its my understanding NCGS cannot be detected by a test. My gastro said we may have caught it early.

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Wow, in that case that's great news. It would be better news if you had no positive TTG of course but considering...

Although I always read that intestinal damage shows up before positive antibodies so that's very interesting!

Do you find yourself sort of naturally eating low gluten anyway? For years before my symptoms even appeared I had a sort of natural inclination to eat mostly gluten free already (always had an aversion to pizza and pasta, always hated anything dough-y and pastry-y), before coeliac and gluten were even on my radar. I always wondered if that was a warning sign or just a coincidence.