Potential Celiac?

[Mommy_Mea]

I have been struggling with low vitamin D for quite a while. Super supplements haven't made a dent. My doctor had me tested for Celiac for potential maladsorption issues, but it came back negative. It has been a few weeks, and her office just called me to tell me that my IGA levels were elevated which could still indicate Celiac, and I should go see a GI doctor.

So a stupid question - can't I just cut out gluten and see if things improve?

ETA: I have now googled "elevated IGA" and see it could be an indicator of other issues as well. But I guess my question really is, if you had a suspicion of celiac, did you just cut out gluten? Or was it diagnosed by a specialist like a GI?

[wendibird22]

Can you just cut out gluten...yep, you totally can. Celiac or not, if gluten causes you trouble then removing gluten is your solution. Easy.
However, if you wish (for whatever reason) to have a firm diagnosis of Celiac then you must continue with a gluten full diet and seek additional testing. A GI doc should run a full Celiac panel (blood work) if your PCP didn't (some PCPs run 1 basic test but not the full panel). A GI will also likely want to do an endoscopy. It's possible to be a sero-negative celiac (neg blood tests) and have a positive endoscopy. Once you remove gluten from your diet you immediately begin to reverse any damage/inflammation. So your testing will be false negative.

Now, all that said, I'm sero-negative and my PCP didn't think it necessary to refer me to a GI so I didn't have any additional testing or endoscopy. I could be a celiac or I could be non-celiac gluten sensitive (which is my PCPs official diagnosis). The treatment is the same...no gluten. It took me probably 4+mos gluten free before I really saw improvement but once I hit that benchmark I never went back. I didn't need a Celiac diagnosis to make me commit to GF nor did I need it to convince my husband/family of my need to be GF. However, I know some people who feel they can eat a little bit of gluten and still feel fine. That's fine and all but if you are truly celiac, eating gluten causes intestinal damage that can shorten your life. I pretend I'm a celiac cause it's possible I am. I'll treat my body as if I am just to be safe.

I hope that helps.

If you wish, feel free to PM me info about what blood tests your doc ran and what the results were. Some docs are really REALLY inept at celiac testing and I've know a few people be told they are sero-negative only to learn the doc misread the results or didn't test the right thing.

[Mommy_Mea]

Can you just cut out gluten...yep, you totally can. Celiac or not, if gluten causes you trouble then removing gluten is your solution. Easy.
However, if you wish (for whatever reason) to have a firm diagnosis of Celiac then you must continue with a gluten full diet and seek additional testing. A GI doc should run a full Celiac panel (blood work) if your PCP didn't (some PCPs run 1 basic test but not the full panel). A GI will also likely want to do an endoscopy. It's possible to be a sero-negative celiac (neg blood tests) and have a positive endoscopy. Once you remove gluten from your diet you immediately begin to reverse any damage/inflammation. So your testing will be false negative.

Now, all that said, I'm sero-negative and my PCP didn't think it necessary to refer me to a GI so I didn't have any additional testing or endoscopy. I could be a celiac or I could be non-celiac gluten sensitive (which is my PCPs official diagnosis). The treatment is the same...no gluten. It took me probably 4+mos gluten free before I really saw improvement but once I hit that benchmark I never went back. I didn't need a Celiac diagnosis to make me commit to GF nor did I need it to convince my husband/family of my need to be GF. However, I know some people who feel they can eat a little bit of gluten and still feel fine. That's fine and all but if you are truly celiac, eating gluten causes intestinal damage that can shorten your life. I pretend I'm a celiac cause it's possible I am. I'll treat my body as if I am just to be safe.

I hope that helps.

If you wish, feel free to PM me info about what blood tests your doc ran and what the results were. Some docs are really REALLY inept at celiac testing and I've know a few people be told they are sero-negative only to learn the doc misread the results or didn't test the right thing.

Thanks Wendibird, that makes sense. If I could do damage to my intestines by "cheating", I would want to know, so probably best to move forward with the GI doctor.

They are mailing me the results, I will send you a PM as soon as I get them!!

[mommylamb]

My best friend's daughter (DS1's best friend) was diagnosed with Celiac a few months ago and has been gluten free ever since. They did the endoscopy to confirm the blood test. She is supposed to go for another endoscopy soon to confirm whether the gluten free diet has helped or not because apparently there are other things that can also cause similar bowel inflammation. Also, apparently some recent studies have indicated that some people have an allergic reaction of sorts to components of Roundup herbicide that can present similarly to celiac.

[Mommy_Mea]

My best friend's daughter (DS1's best friend) was diagnosed with Celiac a few months ago and has been gluten free ever since. They did the endoscopy to confirm the blood test. She is supposed to go for another endoscopy soon to confirm whether the gluten free diet has helped or not because apparently there are other things that can also cause similar bowel inflammation. Also, apparently some recent studies have indicated that some people have an allergic reaction of sorts to components of Roundup herbicide that can present similarly to celiac.

That is a good point too, about being able to track improvement (or lack thereof) on the inside, even if cutting gluten makes you feel better overall. I am calling the GI today to make my appointment!