Is there any way to test for coeliac disease if I haven't ingested it for many years?

[Huggy]

I was told I was a coeliac by a local nutritionist, having suffered anaphylactic shock as the medication I was taking (Lanzoprazole) worked against the natural enzymes in my stomach and therefore my body saw certain foods as a real threat. I was given Lanzoprazole as I had suffered from gastric reflux for many years and I think it was due to eating food with wheat & gluten. Although I am very grateful to the nutritionist for telling me that she thought very strongly that I was a coeliac, I do wish she had advised me to go to my GP and have a a test for coeliac disease, which I believe stems from my mother and her mother.

I would be very grateful for any feedback, thanks.

[Hidden]

Only way to be sure is to go and see your doctor and have blood tests and take it from there....

Good luck

Janie

[Liana]

If you wish a medical answer, then there is a path to follow. The easiest way to start the process is to have the DNA testing done to rule out the possibility that you don't have Celiac Disease. If the test comes back positive and you do carry the gene, then you can decide if it's worth doing the gluten challenge, where you eat gluten for a doctor specified length of time (it seems to vary from doctor to doctor) and then go for the blood tests followed up by the endoscopy or colonoscopy. If you've been eating gluten free for years, the tests won't show you anything. The gluten challenge is necessary.

[pretender]

Start with your GP and have the IgA bood test if this proves positive next step is an endoscopy/biopsies to confirm or deny a coeliac diagnosis.

The anaphylactic shock should be treated as a seperate issue because its a different process and causation. which will require IgE bloods or a skin prick test.

Another alternatative/quicker cheaper option is a food/symptom diary using elimination to find the cause.

Any known side effect for Lansoprazole 30mg does not include anaphylactic shock so needs reporting on the yellow card system.

[Huggy]

Many thanks for your responses. What I was trying to get at and perhaps rambled on too much, was - if I haven't ingested wheat and gluten for many years, will a blood test to see if I am a coeliac, show anything or will it be a waste of time?

The anaphylactic shock was due to my body rejected spicy food and that was caused (according to the top professor at the allergy clinic at Southampton (U.K.) hospital) by taking Lanzoprazole working against my natural stomach digestion enzymes, and I was given that drug as I had chronic acid reflux due to me eating wheat & gluten food as I didn't know that was making me ill.

Unfortunately I couldn't eat anything with wheat & gluten in it, not even for a day as even the smallest amount makes me very ill.

Thanks again for your responses.

[FionaGFG Administrator]

Hi Huggy,

Sadly there's no simple answer or solution. You are right to ask the question. As you probably know Coeliac blood tests are pointless if you have been gluten free for 4-6 weeks or more. As without ingesting gluten your body won't produce the anti-bodies to it that the blood tests will check for.

As Liana said you could ask for the gene test i.e. people with the Coeliac gene do NOT always develop Coeliac disease but having it means that you may do. If you were positive for this then it would be an indicator of whether it was worthwhile for you to then start eating gluten again ahead of the normal Coeliac blood tests. However, in the UK the gene test is not normally peformed very often and I suspect your local GP may well refuse it on cost grounds. But it's worth asking.

I'd suggest you book an appointment with your GP and discuss your dilemma - "I think I am Coeliac based on what I was told in the past. How do I go about getting a definitive & reliable test without making myself ill by ingesting a lot of gluten?"

Curious - are you Mum & Dad both Coeliacs? Do you have any close relatives with Thyroid or other problems? If so mention this to your GP as they may well bear this in mind.

It's always useful to get a proper Coeliac diagnosis - afterall it's a big lifestyle change to undertake without a reliable diagnosis. Staying motivating on a strict GF diet is normally easier after a medical diagnosis. Plus you get more medical support / advice on the risks, lifestyle and follow up checks.

I suspect your GP will say that the only route is for you to eat gluten again. If so ask how little you can eat to still test positive (and ask for dietitian support). Many people are told to eat 6 slices of bread a day. Yet often Coeliacs can react with less than this especially if they eat Ryvita, soy sauce, brown sauce, drink beer etc. Sometimes these are easier to digest whilst on the gluten free challenge as the levels are lower than in gluten bread. The blood tests you'll need will be:

- Tissue transglutaminase antibody (shortened to 'tTGA')

- Endomysial antibody (shortened to 'EMA')

plus:

- IgA

also ask for

- IgG as some people are deficient in IgA

Some people with coeliac disease do not make the usual coeliac disease antibodies.

Bear in mind that if you test positive they'll want you to then undergo a endoscopy & bowel biopsy. This is fine under sedation - but if you go down the path you really need to see it through in full otherwise the blood test alone isn't deemed as reliable enough for a diagnosis (a pain but that's how the current system works).

Let us know your thoughts. Hope this helps.

[Huggy]

Hi Fiona,

Many thanks for your mail, I really appreciate it.

I certainly will visit my GP and ask her. Trying not to be sceptical but I would think that I will get the standard answer - you have to eat 6 slices of bread per day for at least a month but if you don't ask, you don't find out! I thought you were against drinking beer though?! That would be a chore! I have to admit (again) that I do drink the occasional pint of ale because I love ale but I stick to the pale, hoppy, weaker beers which are safer for me but strangely it can effect me sometimes and not others, including the same beer. ! If it does effect negatively, it will give me unpleasant wind (sorry!) at the very least, very bad headache and bloating. Sometimes I don't have any negative side effects at all and I think some of the side effects has to do with stress. Otherwise, I don't go anywhere wheat and gluten, as even the tiniest amount makes me ill. My father works at a brewery and he has told me today that he can't drink the beer anymore as it effects his stomach badly but the brewster told him that the gluten should have been brewed out of the beer. Both my parents do suffer from upset stomachs on a fairly regular basis and although I often mention wheat and gluten, I think my words falls on deaf ears! Both their mothers had stomach issues throughout their lives and a distant cousin is a diagnosed coeliac. The nutritionist I saw said that Celts never evolved to digest gluten and my mother's father was Scottish but this may be poppycock - the former, not the latter!!

Many years ago, I had an endoscopy before but I think they may have been looking for ulcers.

It would make life easier if I was diagnosed coeliac but as I'm sure you can appreciate, I won't make myself ill though. I will mention the gene test but I can imagine that might cost the surgery money and I know they're not keen on spending money!

Many thanks again and I will let you know what the doctor says.

Best wishes

Huggy