A Coeliac Dietitian's unpopular opinion about GluteGuardTM

Below is an approximation of this video’s audio content:

I just wanted to record a quick video to let you know about an event I went to this morning.

I was invited to an event by my old mentor, who is a Dietitian very well known in the field of coeliac disease. She invited me to a breakfast and it was sponsored by "Glutagen" which is the company that makes GlutaGuardTM.

GluteGuardTM is an enzyme therapy that has been approved by the TGA for reducing symptoms in the event of incidental/accidental gluten ingestion.

A lot of people have been asking questions about this supplement recently... and some people have started taking it every time they eat out.

Now I'm very interested in this product and that's why I went along to this breakfast, but at the end of the the presentation it was being suggested that we, as Dietitians, should recommend this supplement to all of our coeliac patients who "take risks" when they're eating out - and by that I mean e.g. ordering gluten free without without asking questions, or eating chips from a shared fryer and that sort of thing.

So it was it was recommended that we we should tell our patients with celiac disease that if if they fall into this "high risk" category, that we should be blanketly recommending this supplement.

I put my hand up (and it was very stressful for me to do this!) but I put my hand up in this meeting and I said "I disagree. I do NOT believe that this supplement should be blanketly recommended to people with coeliac disease."

Coeliac Australia's Current Recommendation

Coeliac Australia currently don't recommend this supplement at all. The reason they don't is because they're worried that people with coeliac disease might think "Oh I can just take this supplement and then I can go out and eat whatever I want."

GluteGuard's Clinical Trials

In the clinical trials, this supplement has been shown to be able to degrade up to one gram of gluten (edit: this does not mean it reliably degraded 100% of the gluten every time).

They were able to demonstrate that it reduced symptoms for people with coeliac disease that were taking one gram of gluten a day. But, because of certain methodology in the study and having a few dropouts in the placebo group, they weren't able to demonstrate that it reduced intestinal damage for these people.

Hence, they are not allowed to make a claim that it protects against intestinal damage - and this is the thing that we're most concerned about in people with coeliac disease.

What they are currently saying is that this supplement may be able to help people that are worried about a risk of gluten contamination getting into their diet.

My Reasons for Being Against this Message

The main reason I don't and would never blanketly recommend this supplement for people is because I would never recommend a supplement that I didn't think was necessary.

The evidence hasn't been able to demonstrate that this supplement can prevent intestinal damage, and if it did, we would be having a whole different conversation - this would be a really good thing.

But they haven't been able to.

Now the reasons I put my hand up in front of this room full of Dietitians and said I don't think this is good (or ethical) that this product be recommended at a blanket level to people with coeliac disease are as follows:

We don't know how people are going to perceive this medicine - whether they might think "I don't have to be as careful with the gluten-free diet if I'm taking this, so I'll just take this pill every time I go out and I won't have to worry about gluten getting into my diet." That's not what we want. It was stressed that we do need to tell our clients they still need to maintain a strict gluten-free diet, this pill is only a "just-in-case." But this message (I believe) is guaranteed to be lost in translation...

There are lots of people with coeliac disease on the gluten-free diet at the moment who have recovered in full, their villi are nice and healthy, they don't have any symptoms anymore, their blood tests are showing that their antibodies have come down..... all really good signs that they're doing really well on the gluten-free diet. These people do not need to all of a sudden start taking this enzyme every time they eat out... and this is the message that I am strongly against.

It's not a cheap supplement. It's over a dollar per tablet and you need to take one for every hour that you're eating "risky food." That can get quite expensive if you're a person that eats out a lot.

Some Dietitians were saying "My clients have taken it and it was good for their anxiety... They didn't feel as anxious about eating out because they knew they had this protecting them." I can understand that. However, what we need to do is educate our patients/clients about the actual vs perceived risk when eating out, and whether eating out necessarily exposes you to an amount of gluten that is damaging for you every time you eat out. The answer to that is something we don't have enough evidence for - certainly not enough evidence to say that this supplement is actually medically indicated.

If you're showing healthy signs of recovery, and you know you've had a follow-up biopsy that shows you're doing well (i.e. your villi are getting back to normal) and you're not having symptoms anymore... then I don't want you to think that you need to pay to have this expensive supplement every time you eat out.

It's probably completely unnecessary in those cases.

Should People with Coeliac Disease EVER Take It?

Where this supplement might be a good idea is where people are maybe going on an overseas trip to somewhere where it might be more difficult to find a gluten-free meal and this is a short-term thing where they just want a little bit of extra peace of mind that they're not going to get sick overseas.

That's a time when I might recommend taking this supplement with them on that short trip.

Another case where I might recommend it, is for people who are extremely sensitive to small amounts of gluten.

If you're a person who has diagnosed coeliac disease, but you have shown recovery (your villi are looking okay), however every time you eat out you manage to get sick because you're very, very sensitive to gluten - now this doesn't happen to everyone, it's definitely on a bell curve and some people are extremely sensitive in that way - then it's possible that this supplement might enable them to have more options for their social life.

So if you are a person that can't eat out at all because you're anxious about getting sick because you have been sick on multiple occasions (in a row) when you're eating out from what's likely to be a very small amount of gluten... then this is another case where I would perhaps recommend this supplement, just to enable that person to open up their social life and improve their quality of life.

Those are the two cases where I would, as a Dietitian, suggest that this supplement might be of use.

A Potential Consequence You May Not Have Considered....

I do not want to see other people with coeliac disease told that they have to take this supplement every time they eat out to reduce their "background" gluten intake.

The reason for this is that there's no such thing as a 100 percent gluten-free diet.

Ever since the gluten-free diet was introduced, what we have done is we've reduced the vast majority of dietary gluten for people with coeliac disease, but there is still a background intake that we know happens.

There is a small amount of gluten - probably under 10 milligrams but perhaps more - that makes it's way into the gluten free diet - and many people don't seem to have active celiac disease on that amount of gluten - they do fine (symptom-wise) and their risk of bowel cancer and other adverse health effects is reduced dramatically/almost to zero.

We know that this background gluten intake occurs, and we know that most people probably are able to deal with that amount and not have adverse health effects.

But if you all of a sudden start taking this supplement every time you eat out and "zapping" every last skerrick of gluten that makes it's way into your diet - how do you know that you're not going to make yourself more sensitive, symptomatically, to gluten in the future?

You could currently be a person who can tolerate tiny amounts of gluten (remembering there's no such thing as a 100 percent gluten-free diet - gluten makes it's way into our diet whether we're on the strictest gluten free diet or not) however if we all of a sudden try to reduce that gluten that residual gluten intake to zero, then what happens when you stop taking the supplement?

Once you stop taking that supplement, all of a sudden you could (potentially) become hypersensitive to gluten because you're not used to that tiny residual gluten intake anymore.

This is my theory - and again we don't have anywhere near enough research on this topic (edit: this is one of the reasons I'm taking part in the Gluten Threshold Study at the Wesley Hospital) - but my theory is that you could become hypersensitive to gluten and that if you even get a single crumb of gluten on your plate you'll become extremely ill.

At the moment you might just get a little bit of stomach gurgling or a little bit of acid reflux, but if you if you try to reduce your background/residual gluten intake to absolute zero - you could be risking making yourself more sensitive (symptomatically) to gluten.

In Summary

I do not believe, and I strongly do not recommend that you take this supplement unless you fall into those two categories that I mentioned:

1. You're going on a trip to a foreign country where you're worried about being able to communicate your gluten-free requirements properly and get a safe gluten-free meal - you might like to take this supplement before meals on that short trip; or

2. You're a person who currently has to limit their social life because almost every time you eat out you seem to get sick from tiny amounts of gluten.

Those are the only two situations where I recommend this supplement might be of use.

But otherwise, please don't think that because you have coeliac disease you need to start taking this supplement!

Kristina Richardson, APD

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