Celiac test: is it pointless if I haven't eaten enough gluten in the lead up?

[Chevybaby]

Currently unexplained low iron, I've put it down to heavy periods. On iron pills for a very long time and now GP has ordered some blood tests coming up this Thursday. Celiac is on the list of things being tested for but I didn't give it too much thought when they said it. Thought there's no point worrying about anything until after the results are back.

But a friend yesterday asked if I've ever considered it could be celiac as I am quite open with those around me that I try to avoid bread and pasta as it makes me feel a bit crap (bloated etc). I just assumed IBS, never gave it much thought. Should add, diagnosed ADHD so absolutely bullocks at monitoring this kind of stuff.

But now this test is fast approaching and i realize I've not had a lot of gluten at all the past few weeks. Advice online is to eat at least one portion of wheat per day for 6 weeks prior to the test... I had a lot of pizza last Friday night, a piece of cake in the office on Monday. Nibbled on my daughter's crusts this morning while cleaning breakfast dishes. So you see what I mean, largely gluten free but absolutely not strict whatsoever.

And now I've Googled celiac actually does make some amount of sense for me as an explanation for this current mysterious exhaustion. The bloating after bread and pasta. I suffer migraines too. Got loads of teeth issues despite brushing regularly and having a healthy diet. Often have diarrhea. Avoid large amounts of dairy as it makes me very ill.

Should I reschedule the test? Or is it worth doing it anyway? Insight from people whove been through it or medical professionals would be gratefully received!

It's pointless if you haven't been eating gluten. It will just give a false result.

It sounds to me as though you have been eating enough gluten. Official advice is two pieces of bread or equivalent for 6-8 weeks before.

The main thing is that you are definitely eating some wheat and that makes it worth doing, I reckon. If it's negative then that doesn't rule it out, but if it's positive, then that would be really good to know.

Six weeks? The GP told my DD she needed to eat gluten for the week before her test, not six weeks. Is that normal? But yes, you do have to eat it, even though you know it will make you feel rough.

Hmm this is my concern. Dont wanna waste anyone's (including mine) time

The 6 weeks is just what I read online! Dont actually know how real that is.

Heavy periods are almost certainly a cause of your low iron. Some people just don't absorb non-heme iron very well at all, and iron tablets have historically been administered incorrectly so they're not being absorbed optimally. I had to have iron transfusions.

I do actually feel like I've had enough. Because although I don't eat it daily, I did for example.on pizza day have absolutely loads. So maybe the one portion daily can be made up for a big portion less frequently...? Hmm.

Thanks for your advice

Oh wow! I've never even heard of that!

Well that's the thing, this could also have zero relation to gluten whatsoever. I might just have ibs, shit teeth and low iron from my heavy periods.

I mean fundamentally I don't mind what the actual cause is, I just would love an answer and a course of action. I am so down about being so exhausted, I want my life back.. How were you after the iron transfusion out of interest?

If you still eat normal oats, and products that say 'may contain gluten' then it's likely you are consuming a small amount of gluten every day without realising it. Do you eat biscuits, cereals, any chocolate? Beer? All likely to contain gluten, especially barley malt. I'd have the blood test if it were me, and eat a slice of bread or two every day until then. And mention it to the doctor. I think if you were having a biopsy taken it would be different, as they'd want to check for erosion of the villi in your gut. But blood tests could be repeated if necessary.

Definitely more than a week. I've been told 3 weeks many years ago the. 6 weeks fewer years ago. I think they have found if you don't do it for long enough there is a greater chance of a false negative. And once you've been tested negative it's really hard to get a second test as your records show you were tested already

OP if you've been avoiding bread and pasta then you are likely to have still consumed gluten as it is in so many products. If you eat cakes, biscuits, ready made gravy, any sort of pre-made meals or processed foods, anything from takeaway bar most Indian, candy, packet anything. Etc you will undoubtedly have been consuming gluten. Just avoiding bread and pasta won't have removed all gluten from your diet.

Coeliacs have a really hard job avoiding gluten and even with absolute fastidious checking we can still get glutened. If all you have done is avoided bread and pasta and you've been feeling fine it's unlikely you are coeliac.

Just echoing what PPs have said - gluten is present in lots of things so even if you largely avoid bread and pasta, it'll still be in other things you're eating (sauces, gravies etc).

I had a very similar situation to you - diagnosed IBS years ago, then found to have low iron and folate. This was put down to irregular bleeding caused by depo injection. After years of iron and folic acid tablets, I was tested for coeliac disease and it was positive!

It sounds like you've been eating a decent amount of gluten anyway so that, plus gluten you eat unknowingly, plus trying to eat a bit more each day this coming week - I'd be very surprised if that doesn't elevate your antibodies if you are a coeliac.

Although it makes you feel rubbish, I used it as an opportunity to eat my favourite gluten containing things before potentially having to go GF. For me that was macaroni pies, crusty tiger loaf and spinach & ricotta tortellini 😋

Good luck!

It was a temporary fix but yeah it was fine, I felt a lot less exhausted. I ended up eating more meat again and taking dodgy haem iron supplements from the US, before finally having a hysterectomy (I had exhausted every other treatment option). Now I've recovered from post surgery anemia my ferritin and haemoglobin are fine, no need for supplements.

You have been eaten some gluten. You can up the amount for the rest of the time until the test, as you still have 6 days. If it is positive, you can rule it in. If it is negative, but you feel worse for eating extra gluten, you can ask for another test later on. As you have identified things that definitely bloat you, you could try different things, like wheat cereal, biscuits, quiche etc. You have also identified potential issues with dairy, so get that checked too.

Right, tbh I’m not surprised. This is the same GP that, when DD was suspected to be anaemic, sent her for blood tests and when we went back for the follow up appointment said oh I didn’t ask them to test iron levels…...she was really quite anaemic in the end and has been on meds since.
Anyway, unsurprisingly, DD tested negative for gluten allergy/coeliac but she has for quite some time now been totally avoiding gluten (fastidiously checks labels) and makes most food from scratch. Shes been avoiding anything with emulsifiers too. She has a range of symptoms and they undoubtedly disappear when she is not eating it. Is there any benefit in being diagnosed?

Doesn’t the blood test need different amounts of gluten to the biopsy ?

How old are you? I went to docs as I had issues and they just said intolerances are common with age.

I had already been avoiding dairy and started cutting out wheat in large quantities. Do for example I avoid bread / pasta / cakes / breaded food but don't worry about some in a sauce.

It made all the difference. I will eat occasional stuff if I'm out eg a sandwich but would then make sure I don't have anything else the next day.

I did one of those food allergy tests and it came back with wheat, dairy and eggs. It explained why I used to get such bad stomach pains when I ate egg mayo rolls!

@MandyMotherOfBrian That sounds very frustrating! To not test iron levels is just ridiculous. From everything I've learned recently from getting my daughter tested for coeliac, I suspect it's probably not worth it if she's much improved, as going back into gluten is pretty horrible. If she can find a better GP they might be able to flag her up as 'suspected coeliac' or suchlike. The benefit of a diagnosis is regular checkups and blood tests, but ultimately the treatment will be the same, a fully GF diet, which is what is already working for her.

Worse is that they'll exclude it as a possible forever more.

Reschedule and go through it, as you are at least already eating gluten - you're not completely GF and then having to reintroduce it in one go, which I'm told is really, really unpleasant.

I’m celiac and it’s in so much more than you think. If you’ve drank squash, had a chocolate bar, soy sauce, takeaway, sweets etc it’s not just the usual suspects so I’m sure it will be worth doing.

Heavy periods are almost certainly a cause of your low iron.

It's difficult to distinguish between cause and effect

Low iron causes heavy periods and heavy periods cause low iron!

For me the cause was coeliac disease preventing me from absorbing iron correctly, which lead to heavy periods which lead to more severe anaemia etc...

Gluten free sorted it out completely (my teeth are still shit though 😢)

Oh this is soo interesting. Sorry OP don’t mean to hijack your thread! So DDs anaemia could be related to the suspected gluten intolerance!? Literally no one at the GP has suggested this. So frustrating. And yes, I take your point OneSmallPieceOfCheese, she’s not going to be eating gluten anyway so maybe not that important. There was only one thing I was wondering, if you’re coeliac do you get prescribed/need an Epi Pen, or is anaphylaxis not generally a concern?

Coeliac disease is not an allergy, so anaphylaxis is not relevant

@Chevybaby

This is the advice from Coeliac UK:

It is important to inform people undergoing testing for coeliac disease that in order to get accurate test results, they should continue to eat a gluten containing diet before and during the diagnosis process. NICE recommends including gluten in more than one meal a day for at least six weeks before testing.

A gluten free diet should not be initiated until diagnosis is confirmed by a specialist, even if the results of a serological test are positive.
If people who have restricted their gluten intake or excluded gluten from their diet are unable to reintroduce gluten into their diet before testing, refer the patient to a gastroenterologist and explain that it may be difficult to confirm their diagnosis.

All the GPs I've come across have been utterly clueless about the 6 week requirement. I was told my Coeliac blood test was normal by 4 different GPs during the last 5 years which meant that I suffered needlessly during all that time. When my symptoms worsened I educated myself - I so regret not doing it sooner.

@MandyMotherOfBrian it's worth being diagnosed so you know it is coeliac disease or gluten sensitivity/intolerance

Coeliac means no gluten ever. Eating gluten with have very detrimental health effects and can increase your chances of bowel cancer. It is an autoimmune disease.

Intolerance is a digestive issue. Repercussions are unpleasant rather than potentially permanently damaging.

Intolerance also means you may be able to tolerate a little gluten. If you don't have to completely avoid it makes life easier do it's good to know what you are dealing with.