The "i'm Not Celiac, Therefore I Don't Have To Be As Careful" Reasoning

[BlessedMommy]

I've noticed something and it's that people have a tendency to proclaim that they're not celiac and then give a follow up line about not being as careful on the gluten-free diet.

 

My thoughts are as follows:

 

1) Really? How do you know that you're not celiac? If a person went on the gluten free diet without bloodwork, then they definitely haven't ruled out celiac.

 

Those who have been blood tested could've gotten a false negative. Even if they did a biopsy, they could've missed the section of your intestine that has it.

 

2) How do you scientifically know that doing a lax version of the gluten-free diet won't hurt you?

 

I just am not sure why people go around proclaiming 2 different sets of rules for celiac and non-celiac gluten free diets. Rhetorical question: Is there any scientific information proving that purposefully cross contaminating myself is a good idea? 

 

This came from a conversation that I overheard at the health food store. The employee was advising a gluten intolerant person about oats and though I didn't hear the whole conversation, it sounded like she may have been encouraging the person that eating non certified oats was fine, because "you're not celiac."

 

I started chatting with the lady while standing in line and as it turns out, although she's supposedly not celiac, she is pretty much bedridden and violently ill if she gets any gluten.

 

I advised her that even if the celiac tests don't show celiac, it doesn't mean that she's not.

[LauraTX]

Woe to anyone who trusts a non-expert store clerk with health advice.

[nvsmom]

Woe to anyone who trusts a non-expert store clerk with health advice.

 

LOL

 

I'm normally not a huge fan of about.com, but in Open Original Shared Link she quotes Dr Fasano (celiac expert) as saying:

In gluten sensitivity, the innate immune system -- an older part of the immune system and the body's first line of defense against invaders -- responds to gluten ingestion by fighting the gluten directly. That creates inflammation both inside and outside the digestive system, according to Dr. Fasano.

Inflammation is nasty. It messes with your whole system and can nudge you right along into heart disease and diabetes. That's a good reason for those with NCGS o avoid gluten right there.

 

On page 2 she discusses diagnosing a celiac based on the biopsy.  Marsh  III is celiac disease, but Marsh I and II are NCGS (non-celiac gluten sensitivity) but some who continued on a gluten filled diet went on to "develop" celiac disease when they graduated to Marsh III.     But they weren't celiac disease to begin with...False negatives are possible.  They aren't the majority by any means, but they do happen.

[124chicksinger]

This interests me because I have a "no celiac" diagnosis by blood work and biopsy (tho I think he didn't take enough samples) and the blood test could be false negative.  I showed inflammation in the entire upper scope, and he took biopsies of my esophagus and stomach too. Pathology for whatever he requested was all negative.  But, I stopped eating gluten anyhow, the day before the scopes (both ends).  And when I asked what caused the inflammation, he had no answer other than -- gerd/heartburn - which neither was really an issue for me (unless very occasional only heartburn could cause such inflammation).

 

I have not thrown out my toaster, and I have toasted a piece of gluten-free cornbread in it and ate that without repercussion.  Nor my pots, which i do use to cook for the entire family.  Am I careful at home to not cross-contaminate?  Yes, but, having "you're not celiac" diagnosis, I assume a crumb on the counter, if it came into contact with something else I put in my mouth, cannot damage my small intestine, and perhaps would not cause a reaction at all - but I don't know that for sure.  I do know that eating out on Sunday gave me 3 trips to the toilet, 2 of them urgent/explosive, so cause/effect was definitely occurring - I don't think it was coincidence - even tho I ate what I believed to be gluten-free choices.  Meanwhile, I have eaten an omelet from a place down the street that likely was cooked on a griddle where pancakes were cooked prior, without incident.

 

Do I think it would be okay for me to have a piece of ---- pizza?  No.  Nor cake, nor toast, etc.  I do believe a few pieces of regular macaroni would likely cause me intestinal distress, and therefore, I have lost my desire to eat it.  All in all, I think I probably do not have to be as careful as a diagnosed celiac, but I really don't know.

 

I had planned in a few months to test the waters and eat something really doughy and wheaty and sure to be the culprit IF it made me sick, but honest and truly, I have no desire for such food, so I don't know how/when I'll test myself.  And, when I do, if I don't react---then what has this gluten-free path been about?  

[GottaSki]

 

 And, when I do, if I don't react---then what has this gluten-free path been about?  

 

 

That you found improved health gluten-free?

 

If you really are gluten intolerant or have early celiac....you will know it when/if you decide to return to eating gluten.

 

In my opinion, you are ahead of the game simply because you are connecting the food you consume to your health.

 

[GottaSki]

 

I advised her that even if the celiac tests don't show celiac, it doesn't mean that she's not.

 

For me...I would not have this conversation in the grocery check out line -- simply because there is no way to know in a brief conversation the medical history/testing of this individual.

 

I do, however, regularly engage in conversations in the grocery isles when I find people in obvious distress reading ingredient labels

[FruitEnthusiast]

The way I look at it, whether Celiac or NCGI, it's never a good idea to mess around with anything regarding our immune systems or inflammation. Our bodies have given us a warning sign. Gluten and intolerances in general aren't something to be taken lightly. That ball can get rolling until it's big enough to crush your life, like it has mine for the time being. I won't ever take good health for granted again, after fighting with everything I have to get back in the game... and I will get there   When I do I won't let anything happen to get stuck on the bench again.