Tests

Summary

This is new science and the gluten subject is developing all the time, but currently you can choose to test via:

• Genetic Gluten Sensitivity (don’t need to be eating gluten)
• Blood for Gliadin Antibodies and Villi Tissue Damage (need to eat gluten)
• Stool for IgA Antibodies and Malabsorption (best to be eating gluten and has to be back in the US within 2 days which costs a fortune so is not really a go-er here in the UK but maybe if you live in the US)
• Just doing the diet – if you do it well and feel better, perhaps you don’t need to test formally!

These can be done in addition to biopsy if deemed necessary.

The Blood and Stool Tests are checking for antibodies to the most well-acknowledged form of gluten – gliadin – and for evidence of coeliac disease.

They will NOT pick up any other form of gluten problem eg to a different grain or to any disorder other than coealic disease (and there are 100s of others). The blood test is not seen as 100% accurate. The stool test is more accurate but is difficult to do as you have to get the test sample back to the US lab within 2 days.

The genetic test is looking to see if you have the genetic pattern that could mean you have now or are likely to develop in the future ANY form of gluten issue to ANY form of gluten (not just the gliadin). It is NOT a test for coeliac disease. If the genetic test is positive, then you might look closer for coeliac disease to see if that form of gluten problem has started then if you want to, but you go on the truly gluten free Barrier Diet anyway.

My advice generally is to go this route as it is the most comprehensive:

1. Do the elimination/trulyglutenfree/Barrier diet and start to feel better.

2. Confirm if the genetic pattern exists. And if it does,

3. Test for coeliac disease as one of the main gluten sensitivity diseases so that you can address the damage to villi and malabsorption specifically. Use the Blood or Stool antibody tests below and confirm with biopsy if you can  (although be aware that this still could be negative and you have coeliac disease, see the note on biopsy below).

4. If coeliac disease genes are present and even if any CD tests come back negative, check for osteoporosis and malabsorption. Forewarned is forearmed and all that.

Now, let’s look at each test in more depth.

The Diet – Elimination & Challenge

All the information and diet guidelines are in the Barrier Plan and TrulyGlutenFree ebook (which you get free as a member). Get that and you’re off. Just remember that to confirm a problem, you need to be off the suspect grains (or all of them) for at least 10-14 days. Then, see how your symptoms are, add the grains back in one at a time and you will soon identify which cause you a problem.

Note: this will help NOW and you will no doubt feel better for doing it, BUT if you continue to eat grains you think are OK and you are actually truly gluten sensitive, those OK grains may well become a problem in future. So be warned. The gene test will answer that question for you but this is a quick way to feel better symptom-wise whilst you save for tests if need be.

The other thing to consider is that it is vital to know if you are coeliac because of the issues surrounding the risks associated with it that often stem from malabsorption.

Genetic Tests

This is exciting in that it makes no difference whether you are eating gluten or have been off it for donkeys years; the test will still work. It’s also particularly useful for identifying if your symptoms could be down to gluten intolerance, or to test risk of later developing the problem, especially if a family member is coeliac or GS.

Gene testing is very complex but basically we all have patterns of proteins on the surface of our white blood cells. These are called HLAs (human leukocyte antigens) and one of these, often related to CD and NCGS, is called DQ, again of which there are several, all numbered for identification. Coeliac gene testing looks for the HLA DQA2 and 8 genes and they are estimated to be found in over 90% of CD sufferers.

However, experts believe they have found other DQ genes including DQ1 and 3, which can signify Non-Coeliac Gluten Sensitivity.

You can get a comprehensive gene test which looks for all DQA and DQB genes which might be involved in CD or NCGS. Some labs only do DQA genes which some experts feel may lead to some genetic patterns being missed, although they are cheaper. Clinically, I have indeed had patients who tested positive only on DQB which would not have been found had we just done the cheaper DQA. It is for this reason, I only offer a DQA and DQB test. No point in testing at all if you only look in half of the places.

The test is done via a cheek swab at home. Results take 3-6 weeks and you get analysis and a video explanation to help you understand the results. You can order it here. I get a company in the US to do it for me as the lab will not do it for me direct, sadly.

Gene Test Results Example

Look here to see an example of what your results might look like.

Blood for Gliadin Antibodies and Villi Tissue Damage

Currently, if you present with typical gluten symptoms or maybe anaemia, or you have a good out-of-the-box-thinking GP, you will be tested for coeliac disease.

If you are found to have gluten antibodies in your blood and damage to your villi on biopsy, you have CD. More specifically, you will be tested for gliadin, the most common gluten type found in wheat since this is the one most studied. If nothing is found, you don’t have a gliadin problem and that’s an end to the gluten investigations, despite the evidence that coeliac tests are far from 100% accurate and you’ve only looked for gliadin, and even then only one type of it: 33-mer gliadin. It can be useful as a first test though.

Breaking this test down..

The most common tests for detecting coeliacs and that give you a first clue to whether you are gliadin sensitive, include:

• Total IgA – which shows if someone has a deficiency in the mucosal body immunity marker
• Tissue damage tests – Anti-Tissue Transglutaminase (tTg-IgA and IgG), Deamidated Gliadin Peptides (DGP) and Anti-Endomysial antibodies (IgA-EMA), which combined are highly predicted of CD even without biopsy. The EMA test is now thought to be the most predictive of tissue damage.
• Antibody tests: IgA and IgG Anti-Gliadin Antibodies (IGA and IgG AGA)which show whether someone is not necessarily coeliac but may be sensitive to the gliadin fraction of gluten.

These are all tested (except IgG Transglutaminase as it includes the more up to date EMA tissue damage test) as part of this comprehensive Coeliac/Gluten Sensitivity Test.

Although don’t forget, this will not confirm gluten sensitivity  to any other form of gluten except for gliadin but it can be a good start to rule out Coeliac Disease and see if there is likely to be a simple gluten sensitivity  problem.

Note: For this test, it is best to be eating gluten currently, although some say it will still be OK within a couple of months of stopping wheat, rye and/or barley after which your IgG anti-gliadin antibody levels will have started to drop.

* Remember, you do not have to be eating gluten at all for the gene test.

Even if you are tested for CD, though, don’t be surprised if nothing is found but you still react to gluten; a lot of people come up negative but respond well to a gluten free diet. This may be because the reaction has nothing to do with an immune reaction, which is what the antibody tests are searching for. Men especially tend to get negative antibody tests.

Dr Kenneth Fine has researched this area and believes there are better ways of testing than blood:

“It is not surprising to me that blood tests in the early phase of gluten sensitivity are negative. This is because the immunologic reaction to gluten begins and occurs inside the intestinal tract and not in the blood per se. For this reason, I had an idea that these antibodies should be more frequently detected in the stool of gluten sensitive individuals rather than in the blood.”

Indeed he went on to study 500 people with and without CD or gluten signs and found antibodies far more frequently. This stool antigliadin antibody test is far more sensitive than blood and can therefore pick up gluten antibodies even if you have been off gluten for some time:

“There is no need to introduce the food being tested for in any amount, and especially not in large amounts which could make you ill. If you have been off gluten for short periods, the results will be very close to those if you had never removed gluten from the diet. For people who have been gluten-free for longer than 1-2 years, it is actually best to remain gluten-free for the stool test, and to also rely on the gene test to aid in the diagnosis.” Of which more in a minute.

First it’s worth noting that the stool test can also identify if the situation has gone as far as causing malabsorption without having to have a biopsy, which is great news. It does this by measuring any increase in fecal fat which would suggest fat malabsorption in the intestine.  You can also retest regularly to check healing progress.

The only snag with this stool test is that the sample has to get back to the lab within 2 days and is likely to spoil in transit. So far, sadly, I have not found any European lab who does it. Great if you are in the US or can do that though.

If you wish to do this test and pay for the postage, you can. See here for these options.

Biopsy

A little note on this supposed ‘gold-standard coeliac test’. When a biopsy is done, usually several tissue samples are taken from wherever they can get them from. If the place where they took the tissue sample from happens to have villi damage, it will show up, but what if the bit that was showing damage was the patch next to it that didn’t get taken? It can and does happen so it is not at all 100% reliable. Also, there are several stages of villi damage and it may be that damage is not showing yet; it doesn’t mean you are not coeliac; it just means your villi is not totally flattened yet!

You can get more stuff on testing by looking in the blog ‘testing’ category where lots of my posts on the subject will come up, but I hope this has given you a bit of an insight to start you off.

Next, let’s have a look at the what some of the factors involved so we we can then learn how to treat it effectively. Click the button..