TrulyGlutenFree – say, what?

Part 1. The gluten ‘syndrome’ and IgE allergy to gluten.

I thought I’d kick off our new TrulyGlutenFree section with a series of introductory posts to explain the concept of gluten illness and why TGF is important.

Ah, I know all about gluten – that’s coeliac disease, yes?

Yes. But also no.

boy wearing gray vest and pink dress shirt holding book
Photo by Ben White on Unsplash

Our knowledge of gluten illness has come an awfully long way in the past few years. We now know that gluten illness is a spectrum of disorders rather than all about coeliac disease.

I tend to classify gluten problems into four main types:

  • Gluten/Wheat Classical IgE Allergy – the classical ‘immediate onset’ allergy

  • Gluten Malabsorption – lack of enzymes to break it down, although I don’t think that occurs without a larger gluten problem personally; it’s a clue.

  • Coeliac Disease – the autoimmune attack on the villi in the gut (or is it just that??) and..

  • Non-Coeliac Gluten Sensitivity (NCGS)/Gluten Intolerance – can be every bit as serious as Coeliac Disease, an inflammatory and sometimes autoimmune attack anywhere in the body. People with an ‘intolerance’ ie. a delayed reaction to gluten, maybe IgG antibodies, would also come under this category. This is far more prevalent than coeliac disease.

So, let’s start our intro series of posts at the top with IgE Allergy. Happily, this is the least common one I have come across in-clinic, but it does exist so bears knowing about.

IgE Gluten or Wheat Allergy

In layman’s terms, a food ‘allergy’ happens when the body’s immune system reacts to a harmless food component like a protein when it shouldn’t. It sees it as a threat and immediately produces immunoglobulin E antibodies (IgE), which trigger an allergic reaction involving mast cells and the release of histamine and other inflammatory substances.

a yellow substance with red dots in it
Photo by CDC on Unsplash. I’ve no idea if this is a mast cell but it’s close to the image I have in my head!

Most IgE allergies are mild, but some, as we’ve seen sadly from too many cases reported in recent years, are life-threatening because of the risk of anaphylaxis.

IgE reactions are known as ‘immediate onset’ reactions as they happen usually within a few minutes of ingesting an allergen, but reactions can actually take up to two hours.

Some people might only get reactions after exercise.

The main symptoms are histamine-based and can include:

  • Itching including nettle rash/hives/urticaria, eczema, reddening of the skin

  • Tingling or itchy mouth, runny nose, sinusitis/rhinitis

  • Asthma

  • Swelling of the lips or face (angioedema)

  • Abdominal pain, sometimes diarrhoea, nausea

In severe reactions, anaphylactic symptoms can include:

  • Swelling of the tongue or throat

  • Difficulty breathing and/or swallowing, cough, shortness breath

  • Voice becomes hoarse, husky

  • Severe symptoms of the digestive tract – such as severe abdominal pain and profuse vomiting

If any of those occur, you need to call 999 straight away and will probably need adrenaline shots from eg. an Epipen.

Read the info sheet from Anaphylaxis UK for more on this subject.

How do I test for IgE Allergy?

Some people can indeed have a classical allergy to gluten, but more often it is to wheat itself. IgE allergies are even more common to inhalants, especially pollens and moulds. In fact, some wheat IgE patients react because it is so structurally similar to grass pollen and they have a problem with that.

Your GP should be able to test IgE antibodies via a blood or fingerprick test. Allergy clinics also use skin prick testing to establish if redness/wheals come up.

So, it’s IgE, could anything else be going on?

I have come across people who have several antibody type reactions going on to gluten or wheat, so you could be having delayed as well as immediate onset type reactions. I recommend the P88 Allergy test, which includes IgE but also several other types of reaction including IgG and complement – more of which when we get to delayed reactions/gluten sensitivity. And you will also see some IgE Inhalant and Mould panels at that link, if you need those; I find IgE to inhalants and moulds much more frequently in testing than food, actually.

I’d also advise you check for coeliac disease – properly – more on that in a future post in this series. Just know now that mainstream coeliac tests miss an awful lot of people, especially men, because they’re only looking for one protein fraction, 33-mer, and one transglutaminase, Ttg2, when there are probably hundreds involved.

Tip: bear in mind that you can’t test for antibody reactions like IgE, IgG etc if you have stopped eating a suspect food; you have to have some in your system to create antibodies. That said, if you have stopped, I’m never going to say restart it again to test, especially with classical IgE allergies. If you have stopped and you feel better without it, there’s enough of an answer! If you’ve stopped and don’t feel better, ask yourself if you are ingesting any hidden anywhere and/or continue reading this series to see if some other gluten problem might be going on.

How do I treat IgE Allergy?

If you have an IgE allergy, you have to avoid the substance, I’m afraid, and that includes breathing it in or putting it on your skin, as well as not eating it. Since you’re avoiding it, any other issues should also resolve, but it might well answer some questions about why your health has been a bit rubbish over the years, and you might need to do some repair work as well as avoiding. More on this in a later post.

Ok, hope that helped explain IgE reactions. Next post, we’ll look at Gluten Intolerance and malabsorption.

Please heart and share this post so others can find the help they may need, thank you x

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