Lots of new studies are coming out this week so we’ve got lots of new information to share.

As Celiac sufferers we are all trying to get better. We want our TTG IGA to be in normal ranges and we want our gut mucosa to heal. By gut mucosa, I am talking about the hallmark of Celiac disease – our villi. Villi are small finger like projections in the small intestine that do the job of absorbing nutrients. In Celiac disease, the villi are blunted or shortened. There is also a second parameter regarding gut mucosa – intraepithelial lymphocytes. An elevated IEL population, as determined by biopsy, typically indicates ongoing inflammation within the gut lining. The combination of villous blunting and intraepithelial lymphocyte count describe a Marsh score. Click here for more information about Marsh Scores.

Most of us think that if our TTG IGA is in the normal range, we are doing well. Most of us think that if we are not having symptoms, our villi must be healing and our intraephithelial lymphocyte count should be going down. If we follow a strict gluten free diet, things should all be okay, right?

Not so fast.

According to a new study, “Common laboratory tests, and signs and symptoms of celiac disease do not reliably predict duodenal mucosal healing at re-biopsy.” They looked at 107 paired biopsies with an average time between biopsies of 2.4 years. Ninety- seven people had Marsh 3 or higher damage at their initial biopsy. Sixty nine showed improved Marsh scores!! But twenty eight showed persistent Marsh 3 level damage.

Here’s the weird thing – in those with improved Marsh scores 55% of them had persistently elevated TTG scores. In those with elevated Marsh scores initally and at follow up, only 25% had persistently elevated TTG scores. So, the follow up tests we are getting at the doctor’s office to asses our adherence to the gluten free diet – TTG scores – do not indicate whether our guts are healing. I gotta say, this is pretty disappointing and not surprising.

Also, according to the study, there was no consistent way – to tell if healing was taking place. Symptoms including, persistent diarrhea, weight loss, abdominal pain, and strict adherence to the gluten free diet do not correlate to ongoing damage. Specifically the study states, ” Common laboratory tests, and signs and symptoms of celiac disease do not reliably predict duodenal mucosal healing at re-biopsy.”

So, the tests we take cannot tell whether our guts are healed. Now, I do know that ImmusanT (of the Nexvaxx studies) are testing a cholesterol drug Simvistatin that is only absorbed in the small intestine. During initial testing, they have proven that Simvistatin can reliably predict the status of gut mucosa. Now, this is preliminary and very early research. This has a long way to go.

But the problem with our current testing methods is that we think that our guts are healing if our TTG IGA is within normal ranges. But this study says that we might be still be doing damage or not healing at all without repeat biopsy confirmation. The only way to determine if our guts have healed is with an invasive upper endoscopy.

This makes me believe that we are still very, very early in our understanding of Celiac disease and the tools that we have at our disposal to monitor our disease are blunt and ineffective. Ugh. I just can’t think about this any more today. It freaked me out when I saw this at 4p this afternoon and its been bothering me ever since. How in the hell are we supposed to know if we are better or not? And obviously symptom relief isn’t enough to let us know how we are doing. Or does it even matter? If we are following a gluten free diet… well, there is another study that just came out. Wait until tomorrow for news about that one.