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Following bloods and endoscopy I don't know what my diagnosis is?


TitularTee

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TitularTee Newbie

Hi!

Would be grateful for your thoughts...

I had 2 celiac blood tests done a few months ago after I developed GI symptoms.

I'm in the UK, so it's not easy to access all tests etc, you take what you're given! Also, I don't have any opportunities at all to discuss this with doctors as there really aren't any available ever. 

Results were:

Anti-tissue transglutaminase  23.6 (ref range <15)

EMA IGA weak/ moderate

EMA IGG negative

I've had the endoscopy and everything looked normal. I'm waiting for biopsy results (he only took 2, btw). If the small bowel looks normal just with the scope, does that mean the biopsy is likely to be negative too?

 

I don't want to be coeliac but I do want to manage my health, and there's an 8 week wait for the biopsy results and any diagnosis! Should I go GFD anyway?

 

Thanks in advance x


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trents Grand Master

Titulartee, welcome to the forum!

A positive tTG-IGA makes it very likely you have celiac disease, especially if you have GI symptoms appropriate to celiac disease.  Unless the damage to the small bowel villi is in an advanced state it would be difficult, I believe, to recognize it with the scope alone. That's why they send it out to a lab for microscopic analysis. It also depends on the resolution of the scope and the experience of the one doing the scoping whether or not damage to the villi can be spotted without a microscope. It is unfortunate that the physician only took 2 samples. Four or more would have been better since the damage can be spotty, especially in relatively new celiacs.

Since your testing is done the logical next step is to begin a gluten free diet in earnest and see if your symptoms improve. Whether celiac or NCGS the GI symptoms are essentially the same and the antidote is the same.

TitularTee Newbie
6 hours ago, trents said:

Titulartee, welcome to the forum!

A positive tTG-IGA makes it very likely you have celiac disease, especially if you have GI symptoms appropriate to celiac disease.  Unless the damage to the small bowel villi is in an advanced state it would be difficult, I believe, to recognize it with the scope alone. That's why they send it out to a lab for microscopic analysis. It also depends on the resolution of the scope and the experience of the one doing the scoping whether or not damage to the villi can be spotted without a microscope. It is unfortunate that the physician only took 2 samples. Four or more would have been better since the damage can be spotty, especially in relatively new celiacs.

Since your testing is done the logical next step is to begin a gluten free diet in earnest and see if your symptoms improve. Whether celiac or NCGS the GI symptoms are essentially the same and the antidote is the same.

Thanks for the welcome and the info, that's really helpful. 

I know it's bad to delay a GFD, but I'm so reluctant as I love my food! But I guess you're right as there's clearly a gluten-related issue of some kind.

Scott Adams Grand Master

If you have celiac disease it's best to go gluten-free diet as soon as possible to help you avoid the many related conditions that may be triggered by gluten, and this category on our site summarizes research on them:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/

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      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.
    • Scott Adams
      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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