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Hey everyone its Kristina Richardson here, the Coeliac Disease Dietitian, and welcome, to my very first YouTube video!

Today I’m goIng to be talkIng not so much about coeliac disease, but gluten Intolerance…

I started a Facebook group not long ago, and lots of people have been asking to join which is great.

I created it specifically for people with coeliac disease, but I’ve also been getting people asking to join who don’t have coeliac disease, but rather, have a gluten 'intolerance'.

Now, I dId think long and hard about whether to include these people in the group, and I decided I would, and in this video I explain why.

I see quite a lot of cases, in my practice, of people who have been told they have a gluten intolerance, or believe they have a gluten intolerance, when in fact there may be another thing going on altogether.

So I just wanted to do a quick video talking about this, because if there’s one thing I really hate, its seeing people restrict their diet unnecessarily. So here we go!

There’s a number of reasons someone would consider themselves gluten intolerant, but not coeliac.

1. Self-diagnosis

The first, and probably most common reason, is that someone suspects that gluten may be causing some sort of issue for them - because of the symptoms they get when they eat it - and so naturally they start to reduce it in their diet and when they do, they feel better.

Then afterwards they may find out that they could actually be coeliac... but the only way to get tested for this is to go back on gluten! Now for some people, this is an unthinkable task, because when they eat gluten-containing foods, they feel absolutely awful.

This scenario is extremely common, and if this is you, then first of all I want to say, it’s ok. I understand completely! The 'gluten challenge' protocol - 4 slides of bread a day for 6 weeks - is enough to make any person with coeliac disease quiver in their boots!

But really you have two choices.

- Do the challenge: and find out for sure whether you have coeliac disease; or

- Don’t do the challenge: and wait until some point down the track there is a test that doesn’t require you to eat quite so much gluten.

If you decIde, there’s no way you can do a gluten challenge and take the second option, then ideally, you should consider yourself coeliac until you find out otherwise, and be just as strict with your diet as a person with coeliac disease would be. Then fingers crossed, there is a better testing method available soon, and you can get properly tested.

If you do decIde to take the plunge and do the gluten challenge, then the advice I have for you is: the first few days wIll probably be the worst, and there ismedIcatIon you can get to help wIth the nausea and vomiting.

2. Previously tested negative for coeliac disease

The second reason someone might consider themselves gluten intolerant, is if they have undergone some variation of investigations in the past to find out whether they have coeliac disease, and at the time, the results of those tests came back negative.

However.... they stIll pursue a gluten free diet, because gluten seems to still cause a problem for them.

If this happened in your case, I just want to flag that there is still the possibility that you may have coeliac disease, but for some reason or other, it wasn’t picked up.

There are unfortunately quite a few scenarios, where this can happen:

a. The most common one, is that you may not have been eating enough gluten at the time of your test for the result to be accurate.... especIally if you are a person that cut a lot of gluten-contaInIng foods out of your diet already because they were giving you trouble. Four slices of bread per day for six weeks before undertaking any coeliac testIng is the current recommendatIon - and that protocol will pick up almost all cases of coeliac disease.

b. Another scenario might be that you were tested quite a number of years ago, and you may not have had the right combination of serological screening tests (that’s the blood tests that look for coeliac antibodies). These days there is a standard combination of two or three different tests that, when done together, are really quite accurate at picking up coeliac disease. But this wasn’t always the case, because the tests have changed over the years. The main reason they do at least two tests at the same time is that some people are naturally deficient in IgA antibodies. If they are, the most common coeliac disease screening test - the tissue transglutaminase or ”TTG” antibody test won’t work. So they need to always check for IgA deficiency at the same time, OR the alternatIve is to run a separate test that doesn’t measure IGA antibodies. That’s usually the deamidated gliadin peptide or ”DGP” test.

c. Young children also have quite low and/or erratic levels of antibodies, so that’s why it sometimes difficult to test for coeliac disease in young children. Their tests may come back negative even when they do have active coeliac disease. So that’s somethIng to keep in mInd. Negative previously, doesn’t mean negative forever, and if you’ve previously tested negative in the past, it’s worth looking back through your records and seeing what tests you actually had.

d. Even if you have an endoscopy (a procedure where a biopsy of your small bowel is taken and looked at under a microscope), and that comes back negative, well, there’s still a chance that result could have been wrong too. Why? Well, it used to be standard practice to only take one biopsy - one little bite of the tissue in the small bowel - but now, what they know is that several samples need to be taken because the damage from coeliac disease can be patchy. If you only have one sample, and that’s from a section of your duodenum that doesn’t have damage, or only has slight damage - that’s not going to accurately reflect the status of your disease. So it’s important that multIple samples were taken from multiple places.

e. It’s also notoriously difficult for the pathology lab to get it right when looking at the tissue from your bowel. It’s not just a simple task. It takes a very skilled pathologist. They have to slice it correctly, get the orientation just right, then get the correct measurements. Sometimes they get it wrong! I remember hearing about a case where a very knowledgeable and respected gastroenterologist in my field was so certain his patient had coeliac disease, but the sample kept comIng back negative. He sent it back to the lab three times, asking them to check it again, before it came back with the correct result. So that’s just another thing to be aware of.

If you have a sneaking suspicion that any of these things apply to you, then maybe you should think about getting testing done again. Or, if you can’t bear the thought of eating gluten again, then refer back to my first point.

3. Unorthadox testing

The third major reason why someone would come to the conclusion that they have a gluten intolerance when it may not be the case, is that they have been diagnosed by someone who is either not qualified to make that diagnosis, or, they’ve been given the results of a test that is not reliable.

Before I get into what I mean by that, I want to just clarify a couple of things.

There are 3 MAIN adverse food reactions related to wheat and gluten:

a. The first is, of course, coeliac disease - which as we know we can test for - as long as gluten is being eaten regularly at the tIme.

b. The second is food allergy, specifically a wheat allergy. With a wheat allergy, just like other food allergies, the reaction is usually very immediate, and it's replicatable, meaning every time the food is eaten, the same reaction happens, and usually in a very short period of tIme - like mInutes - usually within half an hour. Food allergies can be diagnosed by a specialist doctor - an allergist or immunologist - and they will use a combination of certain tests like skin prick tests and blood tests, as well as a detailed assessment of the patients history.

c. The third type of adverse food reaction that involves gluten or wheat is a food intolerance. A food intolerance is the most difficult thing to diagnose. Now, I may upset quite a few people by saying this, but a food intolerance, cannot, I repeat CANNOT be diagnosed with just a test. So if you have, in the past, had some sort of hair strand test, or a saliva test or even a blood test, which has been sent off and come back with a list of foods you are supposedly ‘intolerant’ to, I want you to rip that list and throw it in the bin! Those tests, as nice as it would be to have such a simple, non-invasive test, are not worth the paper they are written on.

The only way you can diagnose a food intolerance, is through a controlled elimination and reintroduction protocol. A dietitian who works in this area would do that by taking a very detailed client history and doing a lot of investigative questioning. Then, ONLY when they are quite sure that they know what the particular intolerance may be, they will prescribe an specific elimination diet - usually for a period of weeks - where the suspect food or foods would be either substantially reduced or eliminated from the diet. Then after the elimination diet - if it appeared to give a resolution of symptoms - they would go about re-introducing foods in a structured way so that the exact food or food component that is causing the issues could be identified.

Qualified, Accredited Dietitians would never just give you a blanket instruction to stop eating wheat or dairy (or any other food or food group) unless we fIrst had convincing evidence - from that protocol that was followed - that it was necessary for your medical treatment or symptomatic relief. We’re very passionate about keeping people’s diets as wide and varied as possible, and the unnecessary exclusion of foods is unfortunately something we see in practice all too often.

The other important thing about food intolerances is that - before you go down the route of looking into whether you might have one or not - it's important to rule out any potential medical issues first, and coeliac disease is just one very important example of what should be ruled out.

That’s because the GOOD news about food intolerances is, that unlike coeliac disease, a food intolerance doesn’t require such a strict diet. You can essentially find your own personal threshold for the food that’s giving you trouble. You may be able to have a little bit without any symptoms, and if that’s is the case it’s absolutely fine to do so - there is no damage being done internally with a food intolerance (unlike coeliac disease) and there’s no risk of anaphylaxis - as there would be with a wheat allergy. It’s just a matter of managing symptoms that may be unpleasant or uncomfortable if you have too much, and you can work this out through experimentation.

Also with a food intolerance, you may find that it’s only temporary! You may have a problem with a certain food for a while and then years or even months later you may be able to start re-introducing it. This would in fact be the goal. It’s not a lifelong diet, like it is for people with coeliac disease.

I just wanted to clarify all of the above, because I really hate seeing people on strict diets when they don’t have to be.

So..... do you have a gluten intolerance? Has anything I’ve just told you make you question whether this is the case? Let me know in the comments, I’d love to hear your thoughts on this!

P.S. I know I haven’t touched on the topics of non-coeliac gluten sensitivity, because that’s a whole ‘nother kettle of fish! I’ll talk about that in a future video, if you’d lIke me to!

Make sure you subscribe to my YouTube channel so you don’t miss that one, or any of my future videos.

Thanks for watching!

Kristina Richardson, APD