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Ttg-Iga, Celiac Panel V. gluten-free Oats


006

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006 Apprentice

I've been gluten-free for 2.5 years, at least to the best of my knowledge. Diagnosed via EGD and blood in 2008. I don't get symptoms and wouldn't know if I was glutened. I began using Bob's Red Mill gluten-free Oats several months ago; about a half cup per day, five days per week. I began worrying if I could be getting a "reaction" or damaging myself. I got a Celiac panel along with a tTG-IGA and a complete blood profile. Everything came back normal/negative.

Am I doing a good job or could I be still hurting myself? I have lost some weight; about 7 to 10 lbs recently without trying. I reduced some sugars at nighht, but that can't account for all the weight loss.


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quincy Contributor

I've been gluten-free for 2.5 years, at least to the best of my knowledge. Diagnosed via EGD and blood in 2008. I don't get symptoms and wouldn't know if I was glutened. I began using Bob's Red Mill gluten-free Oats several months ago; about a half cup per day, five days per week. I began worrying if I could be getting a "reaction" or damaging myself. I got a Celiac panel along with a tTG-IGA and a complete blood profile. Everything came back normal/negative.

Am I doing a good job or could I be still hurting myself? I have lost some weight; about 7 to 10 lbs recently without trying. I reduced some sugars at nighht, but that can't account for all the weight loss.

Before my dx I was eating regular oats every day thinking it was good for me. After dx I tried to eat BRM gluten-free oats like you but I could still not seem to tolerate them. I guess everyone is different. I seem to remember reading that the Celiac Sprue Assoc does not recommend that anyone w Celiac eat oats in the first year after dx, but Columbia Celiac Disease Center says 3/4 cup of gluten-free oats is ok.... I have not eaten any oats and my healing process continues. I seem to have difficulty digesting oats to begin with. They cause reflux no matter even if gluten-free oats.

ravenwoodglass Mentor

It can be hard if you don't get obvious symptoms. Since you had positive blood work and that is now in normal levels you may be fine. But if you are still concerned you may want to switch to a different cooked cereal and see if you gain the weight back. Cream of Buckwheat is a good hot cereal and Pocono brand has no chance of CC.

006 Apprentice

Thanks for the replies.

Raven; you're kind of like me in that you got diagnosed late. Was your bloodwork messed up over the years in other areas such as liver, kidneys, other?

The wacked out thing with me was that my blood was always normal until the day we did the tTG-IgA.

I also wanted to clarify that my above noted bloodwork was AFTER several months of BRM-gluten-free Oats. Therefore, I'm wondering if it's possible to still be doing damage if the tTG-IGA and other Celiac profile bloodwork all comes back normal. Obviously, I'm not a false negative guy because I've had some very high positives when the celiac disease was found and shortly thereafter.

bothworldsdoc Newbie

Before my dx I was eating regular oats every day thinking it was good for me. After dx I tried to eat BRM gluten-free oats like you but I could still not seem to tolerate them. I guess everyone is different. I seem to remember reading that the Celiac Sprue Assoc does not recommend that anyone w Celiac eat oats in the first year after dx, but Columbia Celiac Disease Center says 3/4 cup of gluten-free oats is ok.... I have not eaten any oats and my healing process continues. I seem to have difficulty digesting oats to begin with. They cause reflux no matter even if gluten-free oats.

As far as I know, oats have a molecule that, while technically not gliadin (the naughty-bit of gluten), it looks an awful lot like it. In our family, where my husband and I as well as our 2 children are Celiacs, my husband and and daughter (who are least affected)are able to tolerate gluten-free oats. My son and I (with higher antibody levels and more symptoms)cannot tolerate them. I advise patients to avoid all oats until they have a really good handle on gluten-free foods and secret sources of gluten so they can challenge themselves w/ gluten-free oats after months or years living gluten-free w/o confusing the picture.

sb2178 Enthusiast

Possible but unlikely. I'd substitute a similar food in for a month or two and see if your weight shifts. Just... Udi's cinnamon rolls do not equal oats!

BTW, I tried introducing oats after clear bloodwork and seemed to find symptoms after three days of eating 1/4 to 1/3 c rolled oats, cooked in water. Twice. But, I have a relatively recent blurry diagnosis so maybe I just need another year or two to have happier intestines. Other biopsy-diagnosed celiacs I know do fine with them (and have overt symptoms upon gluten exposure).

You could also look up the studies they've done with dosing celiacs with oats. Mostly, I remember reading about biopsies after eating oats, but someone must have done bloodwork too. Good luck!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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