Follow up required?

[Abcdefghi]

Hi! 
I asked my pcp to run serology for celiac a couple weeks ago. I have recurring stomach issues that are worse sometimes than others and frequent constipation. I have done a gluten free diet a few times in the past and always almost magically felt way better. Lately I’ve been having the usual constipation as well as terrible stomach cramping, bloating, and gas. Nothing new, been through it all before, just a phase where my stomach is worse than usual. Anyway… my pcp checks TTG IgA and igg, glaiden IgA and igg as well as EMA. All were negative except the tTG IgG was a “weak positive” at 6. So…. Now what? She offered to recheck labs in a year or send me to GI. 
 

Thoughts? 

[trents]

The tests you had done were for celiac disease which, even though most of the bloodwork was negative, you could still have. But you could also have gluten sensitivity, which does not damage the intestinal villi like celiac disease does but comes with most of the same symptoms. There currently is no test for gluten sensitivity. The way it is differentiated from celiac disease is through an endoscopy with a biopsy of the small bowel lining. If you have celiac-like symptoms but no villi damage then you likely have gluten sensitivity. So, definitely get follow-up with a GI doc for the endoscopy/biopsy. If you have villi damage then you have celiac disease. If not, you likely have gluten sensitivity. The antidote is the same, namely, total avoidance of gluten for life.

By any chance had you gone off gluten before the blood antibody tests were done? If so, that could explain the negative results. Guidelines for blood antibody testing are to be eating the gluten equivalent of 2 slices of wheat bread daily for at least 6-8 weeks before the blood draw. For the biospy, at least 2 weeks of that same gluten amount equivalent before the procedure. In other words, don't quit eating gluten before all testing is complete. The endoscopy/biopsy is the gold standard for diagnosing celiac disease and also for differentiating it from gluten sensitivity.

Also, if your total IGA was low when the blood antibody testing was done, that could cause negative values. Do you have that number and it's reference range? 

Edited July 11, 2021 by trents

[Abcdefghi]

Thanks for the response! I wasn’t gluten free before the labs. I keep reading that the only way to know is to follow up with GI. I guess it just feels silly to go with such minimal indication the celiacs is actually present. However, I also know based on family dynamics, that I wouldn’t be supported fully gluten free without a diagnosis so that encourages me to follow through. Then, there is the cost and inconvenience of it when I’m not that miserable with symptoms at present. 
 

[trents]

5 minutes ago, Abcdefghi said:

Thanks for the response! I wasn’t gluten free before the labs. I keep reading that the only way to know is to follow up with GI. I guess it just feels silly to go with such minimal indication the celiacs is actually present. However, I also know based on family dynamics, that I wouldn’t be supported fully gluten free without a diagnosis so that encourages me to follow through. Then, there is the cost and inconvenience of it when I’m not that miserable with symptoms at present. 
 

"Lately I’ve been having the usual constipation as well as terrible stomach cramping, bloating, and gas." That sounds miserable to me.

Your symptoms scream either celiac disease or gluten sensitivity.

[Scott Adams]

We will be doing a summary of this recent study, and it's focused on kids, but I think it's important and can apply to many cases of "weak positive" results for TTG:
https://journals.lww.com/jpgn/Abstract/2021/05000/Diagnostic_Value_of_Persistently_Low_Positive.16.aspx 

[QLisa]

On 7/11/2021 at 4:00 PM, Abcdefghi said:

Thanks for the response! I wasn’t gluten free before the labs. I keep reading that the only way to know is to follow up with GI. I guess it just feels silly to go with such minimal indication the celiacs is actually present. However, I also know based on family dynamics, that I wouldn’t be supported fully gluten free without a diagnosis so that encourages me to follow through. Then, there is the cost and inconvenience of it when I’m not that miserable with symptoms at present. 
 

My symptoms also seemed tolerable to me, as id been living with them for years and thought that was just my “normal.” I wasn’t even looking for a celiac diagnosis, more like stumbled across one. 

But Celiac disease carries with it the possibility of a many serious complications. So while it seemed crazy to my family to take on the cost and inconvenience of overhauling my diet when I wasn’t “sick” before diagnosis, it was a no brainer for me. 

Also, if you’ve tried gluten free before and felt better, wouldn’t you prefer to feel that way all the time? 

[Abcdefghi]

Thanks all for the replies. 
Update: my allergist was willing to order a serum IgA level and rechecked my tTGs. My IgA is not deficient but “low normal” at 77. My tTG IgG was a strong positive (11) on recheck. They are writing a referral for GI for follow up. 

[trents]

There you go. I'm glad you did the follow-up.

[Scott Adams]

So now you will need to continue eating gluten until your biopsy is completed. Let us know how it turns out, but given your stong positive tTG results it seems that you do have an answer. 

[Abcdefghi]

Update: Finally had my endoscopy today! Doctor said I have some level of gastritis. She noted a good deal of redness in my stomach. Nothing particularly angry but she took biopsies of that as well as quite a few in my duodenum. Given my symptoms and gastritis she is now “more Suspicious” that my symptoms are celiac related but she did not see any visible abnormalities in my small intestine. I should have biopsy results sometime next week. 
Anyone here had gastritis found on their scope for celiac? Is that common in a celiac diagnosis? 

[trents]

Gastritis and GERD commonly occur in conjunction with celiac disease. Depending on the severity of the villi damage, the resolution of the scope used and the experience of the one doing the scoping, damaged villi may not be visible using an endoscope. The lab will look at the biopsy under a microscope.

Edited September 17, 2021 by trents

[Abcdefghi]

Biopsy results are in.... but my usual doctor is OUT... ugh. Covering doc said biopsies were "benign" but there results dont appear to be "normal". If anyone has insight please share! 

"Reactive small bowel mucosa with increased lamina propria chronic inflammation and foveolar metaplasia." 

So... my gut reaction (pun intended) is to think I have celiac. Let me know your thoughts! My regular doc will be back October 1st. 

[Scott Adams]

Since you had a positive tTG IgG blood test, AND you appear to have "with increased lamina propria chronic inflammation," it seems pretty likely that you do have celiac disease. Definitely discuss it with your doctor when they're back, as well as when to start a gluten-free diet. 

[trents]

"Benign," huh! Sounds like he was evaluating it for cancer rather than celiac disease.

[Abcdefghi]

Yes! This is exactly what I think happened! He is the covering doc and when I reached out bc I could see in my portal that a pathology note was present I think he was just checking cancer vs not cancer for an “anxious” patient 😂