High positive TTG, positive EMA, negative biopsy?

[cbaum731]

I will be honest, I'm getting frustrated by "the system" of getting a proper diagnosis. I've had GI symptoms for at least 10 years now. Bloating, upper GI gas, pain after eating and when my stomach is empty, constipation, you name it, many transient issues. Two colonoscopies and one upper GI scope, appendix removal, no diagnosis. In fact, never tested for Celiac antibiodies until this year. 

Late October, I had a TTG IgA result of >250.0 U/mL (normal <15.0), a positive EMA with reflexive titer result of 1:160. Every article I find tells me there's almost no chance of this not being Celiac, but also that until I get a biopsy, nothing is diagnostic. A month and a half later after continuing to eat gluten and getting a biopsy of the stomach, first part of duodenum and second part of duodenum, I get completely normal biopsy results. What now? Anyone else hate this system?

[trents]

In the UK you would have likely been given a diagnosis of celiac disease because your tTG-IGA was greater than 10x normal. But I will tell you we sometimes see this pattern of positive antibody tests with negative biopsy.

You might consider starting a gluten free diet to see if your symptoms improve. Your symptoms are classic for either celiac disease or NCGS (Non Celiac Gluten Sensitivity).

[Scott Adams]

At @trents mentioned, in Europe they are now diagnosing celiac disease if your tTG levels are 10x the reference range, and yours is way over that. Here is an article on this that you could share with your doctor. I'm not sure if a biopsy would make sense in your case, but no matter what the biopsy results end up showing, as sometimes they could be negative, done incorrectly, etc., but in my opinion you will need to go on a gluten-free diet.

Also, getting a formal diagnosis may be helpful for you to stay on a GFD, but keep in mind that there are also downsides that include more expensive life and possibly private health insurance, and insurance could be harder to get.

 

[LouLou24]

This is very similar to me! I had ttg level of 406 and was told <20 was normal. I had a clear endoscopy. I have been gluten free for almost 6months and ttg has reduced to 49. Apparently as I'm off gluten fully it should be 0 by now?

I didn't think I had symptoms, however now being gluten free I can definitely say I had gas pain, pain when hungry, and bad heartburn which have all subsided since my diet change!

Looks like I've got to go back on gluten & have another endoscopy to get an actual diagnosis.

Please let me know how you get on, curious of your similar situation. Good luck!

[trents]

9 minutes ago, LouLou24 said:

This is very similar to me! I had ttg level of 406 and was told <20 was normal. I had a clear endoscopy. I have been gluten free for almost 6months and ttg has reduced to 49. Apparently as I'm off gluten fully it should be 0 by now?

I didn't think I had symptoms, however now being gluten free I can definitely say I had gas pain, pain when hungry, and bad heartburn which have all subsided since my diet change!

Looks like I've got to go back on gluten & have another endoscopy to get an actual diagnosis.

Please let me know how you get on, curious of your similar situation. Good luck!

You are probably still getting minor amounts of gluten from some source. Be aware that when you have been off gluen for a significant amount of time and then go back on it for testing purposes you may find your reactions much stronger than in the pre gluten free days. It may make you quite ill.

[LouLou24]

I do share a toaster, could that be the cause? Would cross contamination cause the levels to still be so high? Other than that I basically cook all my meals at home! Mostly because of lockdowns etc!

[trents]

Sharing a toaster is a big no no!

Have you checked meds and supplements? Wheat starch can be used as filler. And I don't think the FDA requires allergens to be listed for meds. Often, you have to call the company who manufactures them to find that out.

Are you still on dairy and oats? Some celiacs react to the proteins in those two foods like they do to gluten.

[LouLou24]

Oh yikes!! Off to buy a new toaster - thank you.

No I'm not on any medication thankfully.

I do have gluten-free oats and dairy in my diet, these don't seem to give me symptoms thankfully but I do wonder would they affect my ttg levels?

[trents]

Lack of symptoms is not a reliable indicator of whether or not low level inflammation in the small bowel lining is happening.

[Goosse1962]

On 12/15/2021 at 9:45 PM, trents said:

Lack of symptoms is not a reliable indicator of whether or not low level inflammation in the small bowel lining is happening.

Absolutely true. My only 'Celiac specific' symptom is excess gas, originally misdiagnosed as acid reflux. By the time I notice the excess gas, I am already having other issues caused by gluten exposure, such as reduction of B4 and B6 absorption and an increase in upper respiratory symptoms due to allergies and irritants. For me, even trace amounts can build up over a few days to my trigger level. As a result, I now take GliadinX with all meals and snacks, including Certified Gluten Free.

I recently started seeing Certified Gluten Free products that also contain one of the cross-contamination warnings for wheat. If it isn't something like produce or eggs that I wash, I treat it as a potential source for trace amounts of gluten.

[LouLou24]

@cbaum731 how have you been since?

[cbaum731]

I have been significantly better!! I found a good GI doc who agrees that I likely have damage in other areas, otherwise the antibodies would not be present. I did get HLA testing and was positive.

The particular positive genes give my children a 50/50 pattern of possible inheritance, but so far my son doesn't have antibodies.