As An Adult, Can I 'outgrow' Ncgs?

[BethM55]

I am self diagnosed NCGS, for about 5 years now.  I am strictly gluten free.  Gluten ingestion triggers my fibromyalgia symptoms, including joint and muscle pain, headaches, fatigue, and depression.  Until about a year ago, I did not have GI reactions to gluten, but now that seems to be part of the mix as well. (Usually diarrhea.)  
 

My question is whether an adult can 'outgrow' NCGS.  A gluten trial would be difficult, because just the thought of eating gluten makes me anxious, which can cause stress, which in turn can bring on some fibro symptoms.  I'm not sure what to do with these questions.  It would be nice to be able to relax more when we eat out, or at other people's homes, regarding cross contamination.  At present I'm very conscientious about being gluten free.  It's become part of my lifestyle.  Just would be nice not to have to worry so much.

 

Any thoughts?

 

Thank you!

[kareng]

You put this in the Super sensitive section so, I am assuming that you are Super sensitive? . A super sensitive has a reaction to much smaller amounts than cause a reaction in most Celiacs. If that is the case, you can't ease up on trace amounts of gluten, can you?

If you think you may have " grown out" of NCGS, eat some gluten and see how you do. A Celiac cannot outgrow Celiac but little has been studied on NCGS. That is likely because there are many different reasons for NCGS?

If you aren't super sensitive, I can move this to a different section.

[BethM55]

  On 6/23/2014 at 8:00 PM, kareng said:

You put this in the Super sensitive section so, I am assuming that you are Super sensitive? . A super sensitive has a reaction to much smaller amounts than cause a reaction in most Celiacs. If that is the case, you can't ease up on trace amounts of gluten, can you?

If you think you may have " grown out" of NCGS, eat some gluten and see how you do. A Celiac cannot outgrow Celiac but little has been studied on NCGS. That is likely because there are many different reasons for NCGS?

If you aren't super sensitive, I can move this to a different section.

Hello, Karen.  I'm sensitive to gluten, but not super sensitive.  If there is a better forum, please do move my post, thank you.  

 

Problem for me is differentiating what is causing my symptoms to flare, since gluten is only one of several stressors that can trigger the fibro.   I think I have moments when I wonder if I've diagnosed myself correctly.  Although there are no tests for NCGS other than a trial with gluten-free diet.  

 

I'd very much like to chat with other NCGS people.  Sometimes I feel as if I am an intruder on the celiac forums.

[BlessedMommy]

Did you rule out celiac totally before going gluten free? 

 

I'm not a DX'ed celiac, but I don't consider myself NCGS either, because I had such severe problems that I had to halt the gluten trial and thus couldn't even do the bloodwork. Since I haven't ruled celiac out, I simply live like a celiac until proven otherwise.

 

If science comes up with a better testing method that doesn't involve risking hospitalization and disability (my problems with gluten are partly neurological), then maybe I'll get to test for celiac eventually. If I do and for some reason find out that I don't really have celiac, then I'll still be okay healthwise since I was careful with my diet. But since the reverse obviously doesn't apply, I prefer to just assume that I have to be careful. 

 

I also don't think that you have to feel like an intruder on the celiac forums, I basically consider them to be a place for anyone who's had serious medical problems from gluten consumption.

[kareng]

I put this in "Post Dx" because you are 5 years post your self diagnosis and are trying to figure out what to do next.  

 

I think the only way to know if you are sensitive to small amounts of gluten is to try it and see how you feel. Maybe eat one Wheat Thin cracker and see.   I know some NCGS people who won't eat a piece of cake or pizza but are able to take a burger off a bun or pick the croutons off a salad.  It would make life easier for me, if Celiacs could do that.  

[BethM55]

  On 6/23/2014 at 9:36 PM, BlessedMommy said:

Did you rule out celiac totally before going gluten free? 

 

I'm not a DX'ed celiac, but I don't consider myself NCGS either, because I had such severe problems that I had to halt the gluten trial and thus couldn't even do the bloodwork. Since I haven't ruled celiac out, I simply live like a celiac until proven otherwise.

 

If science comes up with a better testing method that doesn't involve risking hospitalization and disability (my problems with gluten are partly neurological), then maybe I'll get to test for celiac eventually. If I do and for some reason find out that I don't really have celiac, then I'll still be okay healthwise since I was careful with my diet. But since the reverse obviously doesn't apply, I prefer to just assume that I have to be careful. 

 

I also don't think that you have to feel like an intruder on the celiac forums, I basically consider them to be a place for anyone who's had serious medical problems from gluten consumption.

Hi.  No, I had no testing prior to becoming gluten free.  I read that many people who have fibromyalgia are gluten sensitive, so I decided to give it a try.  I felt better.  Not cured, but better.  I told my doctor well after the fact, and she did not push for a gluten trial and testing.  I'm pretty sure I'm not true celiac, just someone with a wonky immune system and a wonky central nervous system.  I wouldn't mind doing a true double blind test of gluten, if it could be done without me knowing at all that it was ongoing.  I stress so much when I think I might get glutened, that the stress itself can trigger fibro issues.  So I don't know what is truly causing the problems.  If I had symptoms like yours, I would not even consider this testing.  Someday there will be a blood test, or a saliva test, or some sort of benign lab test for us.

 

That said, I may have been glutened last Friday at a work lunch meeting, which is probably why I'm feeling so crappy and questioning everything.  (My boss prepared the lunch, which was mostly salads, and even bought gluten-free crackers and baked gluten-free brownies from a mix.  I didn't discuss with her the issues of gluten in her utensils and bakeware.  Maybe I'm more sensitive than I thought.  Last Saturday I mostly spent sleeping and taking pain medication.)

 

Thank you for your reassurance.

[BethM55]

  On 6/23/2014 at 10:04 PM, kareng said:

I put this in "Post Dx" because you are 5 years post your self diagnosis and are trying to figure out what to do next.  

 

I think the only way to know if you are sensitive to small amounts of gluten is to try it and see how you feel. Maybe eat one Wheat Thin cracker and see.   I know some NCGS people who won't eat a piece of cake or pizza but are able to take a burger off a bun or pick the croutons off a salad.  It would make life easier for me, if Celiacs could do that.  

Thank you.  

[nvsmom]

I've never heard about people outgrowing NCGS. I have my doubts that one would outgrow it but that is completely a guess.

 

I do know that some cases of NCGS "become" celiac disease according to some studies.  My guess is that in those cases those people already had celiac disease but became sicker so it was finally measurable... Not ideal.

 

I would be careful about reintroducing gluten into your diet. You could be a celiac and not know it. NCGS and celiac disease symptoms are virtually the same. Some people feel sicker than others, some have neurologic symptoms whereas others get joint pain and others still have digestive problems.  There are those with NCGS who have more severe immediate symptoms to gluten than I have, but I also have lingering joint and thyroid issues that I'm guessing  celiac kicked off after years of no treatment.  I would consider the gluten-free diet as a better safe than sorry diet.  

 

If you do start eating gluten without serious symptoms, you might as well get tested for celiac disease after a few months - just to be on the safe side.

[BethM55]

  On 6/27/2014 at 10:39 PM, nvsmom said:

I've never heard about people outgrowing NCGS. I have my doubts that one would outgrow it but that is completely a guess.

 

I do know that some cases of NCGS "become" celiac disease according to some studies.  My guess is that in those cases those people already had celiac disease but became sicker so it was finally measurable... Not ideal.

 

I would be careful about reintroducing gluten into your diet. You could be a celiac and not know it. NCGS and celiac disease symptoms are virtually the same. Some people feel sicker than others, some have neurologic symptoms whereas others get joint pain and others still have digestive problems.  There are those with NCGS who have more severe immediate symptoms to gluten than I have, but I also have lingering joint and thyroid issues that I'm guessing  celiac kicked off after years of no treatment.  I would consider the gluten-free diet as a better safe than sorry diet.  

 

If you do start eating gluten without serious symptoms, you might as well get tested for celiac disease after a few months - just to be on the safe side.

Thank you.  I suspect you are correct.  Sometimes I get a bit cranky and wishful, wanting to not have to deal with this.  However, being gluten free is a far easier burden than many other treatments other illnesses require.  I need to remind myself that everyone has a 'wierdness' of some sort or other.  NCGS is mine.  One of mine, anyway.

[nvsmom]

I hear you! Eating gluten-free is a hassle, but it is usually easier to deal with than many other illness - the gluten-free diet has fewer side effects than most treatments.