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Testing positive after 5 year gluten-free diet

jd222
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jd222 Rookie
jd222
Posted

Hi all,

I have been on a gluten free diet since July 2017 after I was diagnosed with it. I revamped my kitchenware, I'm strict with my diet, double check ingredients, etc. I have had a handful of hiccups (from eating out mostly) and I'm pretty sensitive to contamination. My new gastro wants me to test every year (IgA anti-tissue transglutaminase test) and it came back positive for celiac even though I'm still on my diet. Is it possible to get a positive result while gluten-free?

I haven't had any symptoms that I can think of. Usually I get fatigued, headaches, and some gastro problems but I haven't had any problems (other than from a lack of fiber honestly). The only thing I can think of that would contain gluten is the Coca Cola I drink (which I'm certain should be fine) and some edibles I have had (which are labelled gluten-free, although not certified). Has this happened to anyone else? I've sent a message to my gastro to follow up and I'm not concerned I have RCD, but I do want to ease my mind a bit. 

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Russ H Community Regular
Russ H
Posted
35 minutes ago, jd222 said:

Hi all,

I have been on a gluten free diet since July 2017 after I was diagnosed with it. I revamped my kitchenware, I'm strict with my diet, double check ingredients, etc. I have had a handful of hiccups (from eating out mostly) and I'm pretty sensitive to contamination. My new gastro wants me to test every year (IgA anti-tissue transglutaminase test) and it came back positive for celiac even though I'm still on my diet. Is it possible to get a positive result while gluten-free?

I haven't had any symptoms that I can think of. Usually I get fatigued, headaches, and some gastro problems but I haven't had any problems (other than from a lack of fiber honestly). The only thing I can think of that would contain gluten is the Coca Cola I drink (which I'm certain should be fine) and some edibles I have had (which are labelled gluten-free, although not certified). Has this happened to anyone else? I've sent a message to my gastro to follow up and I'm not concerned I have RCD, but I do want to ease my mind a bit. 

Can you post your test results and lab standard ranges if you have them?

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trents Grand Master
trents
Posted

Welcome to the forum, jd222.

What about gluten in meds, pills, supplements? Wheat starch can be used as a filler.

What about gluten in oral hygiene products?

Do you still consume dairy and oats?

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jd222 Rookie
jd222
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Posted
1 hour ago, trents said:

Welcome to the forum, jd222.

What about gluten in meds, pills, supplements? Wheat starch can be used as a filler.

What about gluten in oral hygiene products?

Do you still consume dairy and oats?

No dairy and haven't had oats in a few months (if I do they are certified gluten-free).

For meds I only take antacid, which is labelled gluten-free and doesn't have any ingredients that stand out to me (it's the Rite Aid brand).

I use colgate products (again, that are labelled gluten-free; sorry for being a broken record) for dental hygiene and I use Blstex Medicated Lip Balm. 

1 hour ago, Russ314 said:

Can you post your test results and lab standard ranges if you have them?

Says it should be <15 U/mL and I have 18.5, which doesn't read to me as a sign that I've been eating gluten for long, but I'm not sure. 

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trents Grand Master
trents
Posted

Have you had an endoscopy/biopsy lately to check for villi damage?

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Russ H Community Regular
Russ H
Posted
9 minutes ago, jd222 said:

No dairy and haven't had oats in a few months (if I do they are certified gluten-free).

For meds I only take antacid, which is labelled gluten-free and doesn't have any ingredients that stand out to me (it's the Rite Aid brand).

I use colgate products (again, that are labelled gluten-free; sorry for being a broken record) for dental hygiene and I use Blstex Medicated Lip Balm. 

Says it should be <15 U/mL and I have 18.5, which doesn't read to me as a sign that I've been eating gluten for long, but I'm not sure. 

That result is borderline positive. Serum antibodies decay with a half-life of 3-4 months. From your comment suggesting sporadic gluten consumption when eating out, it is not particularly surprising.

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RMJ Mentor
RMJ
Posted

After two years of normal antibody results I had a low positive DGP IgA result.   I decided it was either from an antibiotic that I took, or from gluten free (but not certified) flours that I was using.  The antibiotic was short term, and I switched to certified gluten free flour, and it went back down to normal.

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jd222 Rookie
jd222
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Posted
21 minutes ago, trents said:

Have you had an endoscopy/biopsy lately to check for villi damage?

Yep, came back looking normal and the gastro didn't have any concerns. 

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jd222 Rookie
jd222
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Posted
4 minutes ago, RMJ said:

After two years of normal antibody results I had a low positive DGP IgA result.   I decided it was either from an antibiotic that I took, or from gluten free (but not certified) flours that I was using.  The antibiotic was short term, and I switched to certified gluten free flour, and it went back down to normal.

That makes sense. It might have been the edibles I was having and I will triple check the antacids to make sure. 

14 minutes ago, Russ314 said:

That result is borderline positive. Serum antibodies decay with a half-life of 3-4 months. From your comment suggesting sporadic gluten consumption when eating out, it is not particularly surprising.

That makes sense, thank you!

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Kate333 Rising Star
Kate333
Posted

Sounds like you are getting CC from eating out.  Many restaurants offer gluten-free menus/items (along with gluten food) as marketing strategies to be trendy, boost sales. IMO, they don't really understand the strict protocols required to ensure safety for diners with celiac disease.   The only safe way to eat out is to avoid restaurants altogether or find restaurants that cater mostly to gluten-free customers.   

Also, try giving up the soft drinks for a few weeks and see how you feel.  They are unhealthy anyway (just sugar, food coloring, carbonated water--not very good for you).  And the caffeine can give you headaches.   

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Wheatwacked Veteran
Wheatwacked
Posted

 

Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients

Table 1 Products allowed/disallowed in the Gluten Contamination Elimination Diet (GCED), targeting the elimination of gluten cross-contamination

Patients with persistent symptoms and/or villous atrophy despite strict adherence to a gluten-free diet (GFD) have non-responsive celiac disease (NRCD). A subset of these patients has refractory celiac disease (RCD), yet some NRCD patients may simply be reacting to gluten cross-contamination. Here we describe the effects of a 3-6 month diet of whole, unprocessed foods, termed the Gluten Contamination Elimination Diet (GCED), ... Most patients who respond to a 3-6 month course of the GCED are subsequently able to return to a traditional GFD without return of symptoms. 

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C4Celiac Contributor
C4Celiac
Posted
21 hours ago, jd222 said:

Is it possible to get a positive result while gluten-free?

 

ya if you're not eating 100% gluten free  😏

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jd222 Rookie
jd222
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Posted
On 6/17/2022 at 1:00 PM, C4Celiac said:

ya if you're not eating 100% gluten free  😏

Shocked and surprised 😔 Can't believe eating gluten causes positive celiac results 😔

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C4Celiac Contributor
C4Celiac
Posted

or refractory celiac

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      Obviously, you have looked at all this from various angles and I respect that. But consider this, you could trial the gluten-free diet for six months to see if it results in lower ttg-iga scores. If so, it is another piece of evidence pointing to celiac disease. You could then go off the gluten fast and return to a gluten loaded diet for weeks or months and repeat the colonoscopy/endoscopy. My point is that trialing a gluten-free diet does not eliminate the possibility of getting valid celiac retesting at a late date if you are willing to engage with the gluten challenge.
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