What's the difference between coeliac disease and being "allergic to wheat"?

[beckyf]

My son (13) had glandular fever 18 months ago, it went on & on, and all the doctors thought he had Chronic Fatigue Syndrome (ME). Blood tests for coeliac disease were negative - but we do have coeliac disease in the family (my daughter, and my husband's sister & uncle are all coeliac). My son became so exhausted that he needed a wheelchair to get out & about. To cut a long story short, I suspected that he might be coeliac, he agreed to start a GF diet, & has been improving steadily ever since. After 3 days on the diet he commented that his bones don't ache any more. After 2 weeks he was able to come out on family walks.

When I told the consultant about this, he categorically stated that my son is NOT coeliac (because blood test was negative), but he is probably allergic to wheat. He intends to do a RAST test for this (measures IgE I think....)

Obviously my son cannot now have the biopsy for coeliac disease (& he is not at all keen to start eating wheat again) - but I have ordered a genetic test from a lab in the USA (recommended by someone I trust) - this tests for coeliac disease/gluten intolerance. But has anyone else heard of an "allergy to wheat", or does anyone know how this differs from coeliac? Thanks.

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An allergy to wheat can be detected by bloods IgE or by skin prick test. But there is a situation where you can be a diagnosed coeliac with a borderline wheat allergy which is what those in the know tell me. I have made a few ripples with Allergy UK by asking about a Gluten allergy as I have conducted (much to my GP's amazement ) my own skin prick test with gluten and wow did I get a reaction. But please be advised do not try this yourself.

[beckyf]

Thanks Tony - don't worry I am not remotely tempted to do my own skin prick test! I was really wondering more about whether there was any difference in symptoms experienced with the 2 conditions - as in my experience allergies tend to present quite differently from coeliac (although I don't know anything about wheat allergy in particular).

[InVivo]

Hello Becky,

Thank you for writing with your question. I think it's really important to share stories such as yours.

Firstly, an 'allergy' to wheat, and a gluten sensitivity / CD are a little different. A classically defined allergy (yes IgE) is an immediate reaction, from a specific part of the immune system. It could mean that you (or your son in this case) couldn't eat any form of wheat, such as the codex wheat starch or glucose derived from wheat, but that he would be fine on other gluten grains such as rye or barley.

However, what seems to be clear to me is that actually, your son does have a gluten sensitivity, and it's likely that he does have CD, but that he's fallen through the gaps in the testing.

Firstly, the tests here in the UK, only test for 33 mer alpha-gliadin. There are 4 different gliadins, and several different protein fractions (such as 17mer alpha gliadin) all of which can illicit the immune response.

Secondly, the auto-immune antibodies (tissue transglutaminase or anti-endomysial) are very highly sensitive and specific, if TOTAL villous atrophy is present. However, if there is PARTIAL villous atrophy, the reliability of the results drops down to about 30%. Which means that 7/10 times, there's a false negative.

Thirdly, it depends on which part of the immune system response they have looked at. There is IgM, IgA, IgG for CD, as well as IgE for 'classic' allergy.

A diagnosis of CD, requires total villous atrophy. However, this is the end stage of the disease, and it can actually take years for this severe amount of damage to occur. Obviously the disease is present in the developing stages that whole time, but will not be picked up by the tests, as they're only properly accurate at the end stage.

The other option, is that your son does not have CD, but has a Gluten Sensitivity. This means that his body is having a severe immune response to gluten, but instead of manifesting in the small intestine, it's manifesting in other tissues in his body.

However, given that

a) there is a strong family history of CD, and

b) your son's symptoms improve dramatically on a GF diet

I would say that these two facts alone paint a clearer picture of what's going on in his body, than a blood test that is woefully inadequate in the absence of end stage CD.

There is a lab in the US, that is offering more comprehensive Gluten Sensitivity and CD testing. However, they won't be able to test patients here in the UK until the end of summer. (I've been pestering them on a daily basis by email.)

I would definitely say to go ahead with the genetic testing. If his tests come back positive, and there is any kind of immune reaction to gluten, then the likelihood of his developing CD is actually 100% within 7 years, even if he is negative now.

But just to re-iterate, the simple fact that he started to recover when you removed gluten speaks for itself.

Please write to me and let me know if you'd like any more information, or if I can help you in any way to support your son's health and recovery.

[FionaGFG Administrator]

Thanks for adding the 'science bit' Invivo! Amazing to see how the UK is ahead of some things yet behind in widening the tests for Coeliac Disease.

Beckyf, I hope that's helped answer your question? The dilemma is always what to do when strong family history suggests CD yet tests come back negative. Worth also liaising with your GP on why and seeing what annual checks he'll agree to with you guys e.g. blood pressure/ blood tests (iron, B12, Vitamin D - commonly very low in Coeliacs or those who are gluten sensitive). Perhaps mention that if he's keen to get tested again in future you know he'll have to go back on gluten. Yet as he's feeling so rough now and with the family history you're trying to be a good mum and ensure he regains his health. The main downside to not getting a 'positive' Coeliac diagnosis at the moment within the UK is that unless you've been positive during an endoscopy they tend not to approve Coeliac prescription food for him. Yet as the offers are widening via online specialists like goodnessdirect.co.uk and mainstream supermarkets this might not be as relevant to you or some families as it used to be. Plus as your daughter has CD you might find some of her monthly prescription allowance eg on pasta can stretch to him. Top tip - Aldi offer free from pasta (less £2.00) and tastes as great as many of the more expensive Free From GF brands in swanky supermarkets.

If you stick to a gf diet with him I'd recommend you boost his vitamins and minerals, as we all know a GF diet isn't always a high in iron, low Gi foods, fibre as a normal diet is. Plus lots of probiotics and pre biotics to boost stomach good bacteria (after a month or so of GF diet as too early can cause the bad bacteria from fighting gluten to overflow). You probably already know all this so excuse me if this is old news to you.

Let us know how things go and if you have any more queries.

Have other parents had this issue and what did you do?

PS our recent blog on gluten sensitivity maybe of interest as well.

[beckyf]

Wow, thanks guys, the science is really interesting - and Fiona, please don't assume I know anything, we are still quite new to this as my daughter (11) was only diagnosed a year ago....

My 4 yr old daughter has just had her biopsy & waiting for results, she is also much better on GF diet.

Expecting genetic test result for my son later today.....

[FionaGFG Administrator]

Ta BeckyF ! It's always hard to know if we're OTT or boring people as I know some on here like to read vs chat so it's nice to see if we're getting the balance right ; )

Fancy doing a blogpost on what it's like being a Coeliac Parent? As it's all so recent it'd be great to get your personal view/ insights. It seems so young to biopsy kids doesn't it at 4yrs old. Bad enough for the adults! Roll on better testing and detection.

Good luck with the Genetic Tests. As Invivo says - we'll keep you posted on when the UK labs offer more tests as per the USA ones. Go Invivo with the daily pester power emails ; )!

[Spudsuzzy]

A wheat allergy means you get allergic symptoms when you ingest wheat but your gut is ok. A while after youll be ok, but coeliac is an auto immune disease where gluten has damaged the gut to such a degree that you cannot absorb nutrients from food as the filia have been worn away in the gut. A coeliac can NOT have gluten or wheat ever again. It can take up to two years for the damaged gut to recover but they have to continue without gluten and wheat or it will become damaged again as they can not absorb gluten ingredients which includes wheat, rye and barley and sometimes also oats. An allergy to wheat is just like an allergy to pollen, you get symptoms but it wont kill you. Coeliac is a lot more serious and can lead to bowel cancer in some cases, and you can become very ill if "glutened" (if you have gluten by mistake) as your gut cannot handle it and it just flushes out as diarrhoea along with all the rest of tge food and nutrients, hence weight loss etc.