A year and a half of test confusion...

[JA917]

Hi all,

I've really been on a rollercoaster journey the past year and a half while trying to narrow down whether I have Celiac or not.  I was hoping that if I can give you my (potential) evidence for Celiac vs. potential evidence against, you all can weigh in on what you think?  

FOR: 

-Positive for one Celiac gene (DQ2).

-Chronic reflux that seemed to come out of nowhere a few years ago.  I also have mild gastritis, as per an endoscopy.

-Chronic urticaria (but transient, not fixed hives). I intermittently get hives/itchy skin that dissipates within a half hour or so.  I have been allergy tested and am not allergic to anything, including wheat.  But if I take a 24-hour Zyrtec, it does stop the hives for a couple weeks.  

-Tested low positive TWICE for only one of the Celiac antibodies.  I was tested for Immunoglobulin IgA, tTG IgA and IgG, and DGP IgA (*this was the low positive) and IgG, Endomysial IgA.  All others were negative, twice.  It also seems curious that the DGP IgA was the one that was positive being that I'm not IgA deficient?

-Consistently low iron.  I'm not anemic, as my hemoglobin is still low-normal, but my iron and ferritin are low.  We supplemented for a few months and they did increase at the normal rate, but dropped again after stopping.  I don't eat meat, but my doctor doesn't think they should've dropped like that regardless of my diet.   

-Joint pain in my right knee, eventually leading to an osteoarthritis diagnosis.

AGAINST:

-Just tested again for Celiac panel and ALL results were normal.  However, I realized I have been eating less gluten without even realizing it/trying to.  I started intermittent fasting a few weeks back pre-testing and have been trying to eat more fruits, veggies and protein -- naturally leaving less space for gluten.  Perhaps my level only dropped down to normal because of that, and because it wasn't very high to begin with?

-Endoscopy one year ago was normal outside of the gastritis.  No evidence of villi blunting or abnormal biopsies.

-No weight loss.  In fact, I'm overweight.

-Normal colonoscopy (I had this done just because I turned 40 in the middle of all of this and it was "time.")

-Normal BMs for the most part.  Occasional constipation when I fast.  No issues with diarrhea. 

-No stomach pain of any sort.

-Normal B12 panel.  No deficiencies of any kind outside of iron.

I realize not all of these indicate Celiac specifically and may be signs of something else, I just wanted to provide as much info on potentials as I can!  And although I intend to, I haven't really had the opportunity yet to try a TRULY gluten-free trial because this testing has all been spread out -- and I know you have to be actively eating gluten for accurate results.  I have a capsule endoscopy scheduled in a couple weeks, so I'm hoping for more answers based on that, but was wondering what any of you may predict my diagnosis to be so far with this information?!  I am thinking that Celiac may be my unfortunate diagnosis and that I'm just catching it very early (thankfully).  All opinions welcome.  Thank you! 

[trents]

My best guess would be NCGS. Some experts in the field of gluten disorders believe NCGS can be a precursor to the development of celiac disease. Whether NCGS or celiac disease, the antidote is the same, total abstinence from gluten for life or at least until some scientific breakthrough occurs that allows those with gluten disorders to consume gluten. I think this is your next step, i.e., seriously committing to putting gluten in the rear view mirror of your life for good.

[JA917]

1 minute ago, trents said:

My best guess would be NCGS. Some experts in the field of gluten disorders believe NCGS can be a precursor to the development of celiac disease. Whether NCGS or celiac disease, the antidote is the same, total abstinence from gluten for life or at least until some scientific breakthrough occurs that allows those with gluten disorders to consume gluten. I think this is your next step, i.e., seriously committing to putting gluten in the rear view mirror of your life for good.

Thank you for your response!  I am actually genuinely looking forward to removing gluten (after all my testing is done) to see how I feel... My remaining question for you is:  Are positive antibodies ever seen with NCGS?  My understanding was that those only show up with Celiac since NCGS doesn't involve the same type of immune response as Celiac.  But I'm seeing conflicting information in my research online... 

[Scott Adams]

Yes, there is a grey zone where some people with elevated blood antibodies that don't quite rise to the level of positive for celiac disease might be in a pre-celiac disease state, and will eventually test positive, while others in this grey area may never test positive. I would say that many in this group might have NCGS, especially if their symptoms go away while on a gluten-free diet.

[JA917]

1 minute ago, Scott Adams said:

Yes, there is a grey zone where some people with elevated blood antibodies that don't quite rise to the level of positive for celiac disease might be in a pre-celiac disease state, and will eventually test positive, while others in this grey area may never test positive. I would say that many in this group might have NCGS, especially if their symptoms go away while on a gluten-free diet.

Thank you!  I think what I'm currently worried about is, provided that my capsule endoscopy is negative and NCGS is then presumed, how to get a Celiac diagnosis down the road if I do go gluten free now and find relief (without worrying about cross contamination).  The gluten challenge seems like such a nightmare!  But, if my test results do indicate NCGS as a possible prelude to Celiac down the road, that makes me hesitate on how to proceed with or without gluten currently, whether to worry about cross contamination currently, etc.. I hope that makes sense!  

[Scott Adams]

Given your long list of symptoms it would make sense to see if a 100% gluten-free diet helps relieve them, especially the anemia, and if so, it would make sense to just stay 100% gluten-free. Also, capsule endoscopy is not ideal for diagnosing celiac disease, as subtle villi damage cannot be detect by it.

[JA917]

3 minutes ago, Scott Adams said:

Given your long list of symptoms it would make sense to see if a 100% gluten-free diet helps relieve them, especially the anemia, and if so, it would make sense to just stay 100% gluten-free. Also, capsule endoscopy is not ideal for diagnosing celiac disease, as subtle villi damage cannot be detect by it.

Gotcha.  I'll give 100% gluten-free a whirl after my testing concludes.  I know the traditional endoscopy is the gold standard, but I've already had that done and it was normal, so my gastro wants to do a capsule endo to try to cover more surface area and see if she can see anything further than the traditional endo... If I do have Celiac, I just seem to be on the very early end, I think.

[Scott Adams]

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[JA917]

4 minutes ago, Scott Adams said:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

I am actually in the middle of this article currently already!   Thank you.  This website is extraordinarily helpful.

[trents]

I just want to reinforce what Scott said and that is we have tended to think in these neat little black and white categories of it's either celiac or NCGS when in reality it may not be quite that neat. There's just a lot we don't know and the immune system is very complex. I often wonder if I had been gluten free as a child if I would have avoided developing celiac disease as an adult. I think there is also this misconception that if you have NCGS, gluten is not harmful, it just creates discomfort and inconvenience.

[RMJ]

Have you considered eating plenty of gluten from now until your capsule endoscopy? If you truly have celiac disease that would increase the chances of damage being seen.

[JA917]

1 hour ago, trents said:

I just want to reinforce what Scott said and that is we have tended to think in these neat little black and white categories of it's either celiac or NCGS when in reality it may not be quite that neat. There's just a lot we don't know and the immune system is very complex. I often wonder if I had been gluten free as a child if I would have avoided developing celiac disease as an adult. I think there is also this misconception that if you have NCGS, gluten is not harmful, it just creates discomfort and inconvenience.

Thank you.  I certainly take it seriously, no matter what my diagnosis is, and I do a lot of my own research also.  I just want to make sure I'm doing everything "right" as much as I can without jeopardizing any test result accuracy since this may be my last shot at getting an official diagnosis since I plan to go fully gluten-free afterwards!

45 minutes ago, RMJ said:

Have you considered eating plenty of gluten from now until your capsule endoscopy? If you truly have celiac disease that would increase the chances of damage being seen.

Yup, I am certainly making a current effort to eat plenty of it!  Not only for test accuracy, but I figure I may as well enjoy it now just in case it's my last go at it also.

[knitty kitty]

Since you're having a last hurrah with gluten, request another round of blood tests for celiac antibodies.  Make sure you're eating ten grams or more daily for those few weeks before your capsule endoscopy.  You probably weren't eating a sufficient amount of gluten needed to provoke sufficient antibody production. 

 

[JA917]

1 minute ago, knitty kitty said:

Since you're having a last hurrah with gluten, request another round of blood tests for celiac antibodies.  Make sure you're eating ten grams or more daily for those few weeks before your capsule endoscopy.  You probably weren't eating a sufficient amount of gluten needed to provoke sufficient antibody production. 

 

I was just thinking this same thing - requesting repeat testing prior to giving up gluten. Makes sense. Thanks!