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Testing for coeliac when on mostly non-wheat diet

(29 Posts)
CathodeRayTube Tue 31-Jan-17 02:17:03

Hi,

Is it right that there is a special test for coeliac disease that can be done when on a mostly wheat-free diet? I thought I read on here that there was a "parallel" test that could be done but GPs I have spoken to don't seem to have heard of it.

My ds has a little bit of wheat (in oats processed on mixed-use machinery etc) every day and actual wheat biscuits once a week to check how he's reacting, but he's often tired and gets more illness than others and I'm wondering if we should be testing for coeliac.

I haven't put him on a full wheat diet to do the test, because wheat makes his nose swell shut which makes sleeping, eating and drinking really really hard.

Thanks!

Sagggyoldclothcatpuss Tue 31-Jan-17 02:23:50

If you want him tested he'll have to be eating gluten. If he isnt, he'll need to eat it for 3 to 6 months.
You do know that wheat and gluten are two different things? Gluten is in many more foods than just wheat. If he's wheat free he's not necessarily gluten free.
We were in a similar position to you, dd was 5 and we'd put her on a gluten free diet. GOSH wanted her back on it. At the time, one biscuit had her screaming all night. I said no and just proceeded with the paediatricians agreement, as of we had had the diagnosis.
When she hit 13, she decided for herself to get tested. By then she was a lot less sensitive and dealt more easily with the re introduced gluten.

CathodeRayTube Tue 31-Jan-17 03:45:56

Thanks, that's good to know. Ds has a decent amount of gluten in his diet and some actual wheat once a week as I let him have a biscuit when we go to places where there are biscuits and juice out. However, it's not a vast amount of wheat and I don't know if it's enough for a test.

I did try a totally coeliac diet but we felt rotten as I just couldn't manage to get the salt and other things exactly right in a totally cooked-from-scratch diet so we went back to mixed. He also only gets vitamin fortification in readbrek and rice krispies and neither of them is coeliac. He'd go downhill quite quickly without those.

Thanks for the reply, I appreciate it.

Sagggyoldclothcatpuss Tue 31-Jan-17 13:56:48

Wheat isn't the issue. It's purely gluten. Wheat intolerance and coeliac disease are completely different issues. You can be wheat free and still be getting dangerous levels of gluten if you are coeliac.

Floralnomad Tue 31-Jan-17 14:02:29

If your son is ok eating gluten then he does not have coeliacs as its gluten that is the issue not wheat .

empirerecordsrocked Tue 31-Jan-17 14:03:59

Has he been allergy tested for wheat or anything else?

You can be allergic or intolerant to wheat and not be coeliac or have any issue with gluten.

CathodeRayTube Tue 31-Jan-17 14:10:11

He eats a huge amount of oats, but pure oats must be okay for coelics are they, because some of the boxes say Coeliac society approved on them.

Not all of the oats that he has are coelic society approved but he doesn't seem to react to any oats in the same way that he does with wheat.

Houseworkavoider Tue 31-Jan-17 14:12:19

What makes you think that your ds has coeliacs disease?

Newmanwannabe Tue 31-Jan-17 14:16:27

I think you are thinking of the gene testing. If you are negative for the genes then there is no chance you have coeliac. But if you have either of the genes it doesn't mean you necessarily have coeliac just the potential for it to be "switched on" at some point in your life.

For the testing he needs to be eating the equivalent of 2 slices bread per day for 5-6 weeks (for an adult 4 slices). They would do a blood antibody test and if positive follow it up with a biopsy of the small intestine. The biopsy is what gives you your formal diagnosis. A positive one is where the villi (finger like structures in the intestine) appear flattened, which is the damage gluten causes them.

Laselva Tue 31-Jan-17 14:17:39

You do need to be consuming gluten daily for 6 weeks prior to testing for coeliac disease. It is possible to get the coeliac gene test whilst gluten free, however this will not tell you if your son is coeliac, just that he carries the gene. Many people carry the gene but never develop coeliac symptoms, therefore the gene test can rule out coeliac disease but not confirm it.
I have 2 coeliac DC, one doesn't react that badly to gluten, one gets violently ill with even a crumb. However both have to be strictly gluten free as consuming gluten will damage their immune system and increase their likelihood of developing other illnesses. The severity of their reactions to gluten doesn't mean that it is doing more or less harm to them.
It could be worth asking for the coeliac gene test and the seeing where you go from there.

Newmanwannabe Tue 31-Jan-17 14:20:12

Oats are very controversial. It's the protein in them which is gluten like. It's safe for some non-coeliac gluten sensitive people but not recommended for Coeliac's. In Australia food labelling laws won't allow any oats to be labeled gluten free but many other countries in the world allow it. I can't remember what is different about the protein for coeliac friendly oats sorry.

CathodeRayTube Tue 31-Jan-17 14:31:08

Do you think it would help if dh and myself had the gene test? Presumably if we don't have either of the genes then ds can't either.

House I just though he might be coeliac as he reacts to wheat and tends to be very tired and prone to long viruses. He's been much much better since I started giving him supplemental vitamins, but he still was quite worn down even after the Christmas holiday.

We have gastro problems that run in my family, which is another reason that I thought of coeliac. However two of my relatives have had endoscopy of both ends and nothing is ever found.

Sagggyoldclothcatpuss Tue 31-Jan-17 18:57:57

Sounds like he's got a wheat intolerance.

CathodeRayTube Tue 31-Jan-17 23:51:45

Do you think a wheat intolerance would make him tired and prone to illness? He is not entirely wheat-free but I just keep the level to below where the symptoms cause obvious trouble.

shewolfmum Wed 01-Feb-17 00:13:02

Sounds like he is having enough gluten to just have a test?

ChishandFips33 Wed 01-Feb-17 00:48:33

I think I have a wheat intolerance (GP won't test formally) but I feel 100% better when I've been wheat free

My energy levels are higher, I sleep better, feel less sluggish, no afternoon lows, no bowel/digestive issues

I suspected wheat and cut it out - after about 10 days I noticed a significant difference

I blipped at Christmas and paid the price for it for a good few weeks after

How old is he...can he articulate how different foods make him feel?

I can tell if there's wheat in something I've eaten fairly quickly - DH says it's nonsense as hasn't been digested fully but when he checks the labels I'm usually accurate

CathodeRayTube Wed 01-Feb-17 07:42:13

Thanks, yes he's getting to the point where he can articulate what's going on, but his usual reaction to wheat is:

"Wow! that was lovely can I have another one? Can I please please please?!"

The tricky think is that he's incredibly sociable and being off wheat slightly excludes him from a lot of social occassions - little things like having tea and biscuits after church, or a church sandwich lunch, or a free choice of cakes at a school cake sale, or the tea and biscuits after my husband recently had his British Citizenship ceremony.

This kind of social gathering and feeling of belonging is incredibly important to ds, and I'm having to weigh carefully what he gains from having it and what he loses from the stuffy nose that develops afterwards.

The other thing is that the only fortified foods that he can tolerate are readybrek and rice krispies and readybrek is not wheat free, even though it is an oat product. Rice krispies is wheat-free but not gluten-free.

So it's all just this constant balancing act. Being on minimal wheat is massively easier than being on no wheat, and being on minimal wheat is unbelieveably simpler than being on a proper coeliac diet.

I just wish I knew how to full measure the effect that these things have on ds. Putting him on Zero wheat, or a coeliac diet for several months and seeing if he gets the flu less often is a long and very intrusive experiment to do.

If anybody had any insight into how to deal with this I'd be immensely grateful to hear it.

We have at least now figured out a number of free-from products that he can eat. He can manage Genius toastie bread (but not any of their other products, which cause him abdominal pain). Any he enjoyed Waitrose gluten-free mince pies at Christmas. He's also having gluten-free hobnobs and Walkers gluten-free shortbread biscuits and Prewitts gluten-free biscuits. These are all helping to broaden his diet and reduce his wheat/gluten intake.

Newmanwannabe Wed 01-Feb-17 14:56:09

I think keep him on wheat. Get him properly tested and then look at diet. If he is coeliac you need to keep him off it. Having that diagnosis helps your mindset stay strong.

Perhaps after testing you could see a dietician who can guide you as it may not be gluten, but something related to the fodmap folds or high sugars?

Newmanwannabe Wed 01-Feb-17 14:56:38

*foods

CathodeRayTube Wed 01-Feb-17 15:24:53

Newman I can't keep him on wheat because if he has a normal wheat diet his nose swells entirely shut and he can't sleep at night.

It takes 6 hours for the swelling to come down, so possibly I could give him two pieces of wheat bread early in the day every day for 6 weeks if that would be enough to satisfy the test.

The other thing is that there are a small number of wheat things that are okay with him - I think years ago I tried something called a dotty cafe cookie and a fruit scone and I don't think they caused a problem which made me wonder if it was a reaction to the weedkillers that they use on wheat.

It's standard practice in this country to spray wheat crops with weedkiller a few days before harvest to "dry" the crop. It effectively kills the plant and weakens it's physical structure so that there is less wear and tear on the harvesting machinery. I have wondered whether the problem may be the weedkiller rather than the wheat itself.

I suppose I should buy another one of those dotty cafe cookies and try it again. I had to give them up last time because he was two years old and liked them so much that he refused to eat anything else. smile

CathodeRayTube Wed 01-Feb-17 15:37:09

Gosh! It's not just me who thinks this. It's published:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3945755/

Laselva Wed 01-Feb-17 15:59:16

Have you seen a paediatrician, what do they say?

CathodeRayTube Wed 01-Feb-17 17:18:53

She said that she thought he was anaemic, but she didn't comment at all on the wheat. I suppose she though we'd have a blood test and come back if anaemia showed, but we never managed that as ds was very very resistant to it, and in the end the Ped said it wasn't worth traumatising him as he was mostly okay looking.

Laselva Wed 01-Feb-17 18:14:41

i dont mean to sound harsh but unless you pursue testing you are not going to get any definitive answers. If he is allergic to wheat or coeliac then even these small amounts of wheat and gluten will be putting his body under duress.
It was only after my DS1 was GF for a few months that he realised the effect gluten had on him. His energy levels and concentration shot up, he hadn't realised they weren't as good as they should be as how he felt was his 'normal'. He is in his late teens now and strictly GF. We had never realised he was coeliac, we only got him tested after DS2 was diagnosed. Now he knows what 'normal' feels like he is quick to check his diet or take some vitamins if he feels under par.
It's possible to get gluten into you sons system without giving him wheat, a daily portion of rye or spelt can be given in the form of bread/ crackers or pasta. A skin prick test for a wheat allergy is a relatively straight forward test and doesn't require him to be eating any wheat.

shewolfmum Wed 01-Feb-17 21:28:04

Being off wheat isn't off gluten so you can still get a test. Spelt is sometimes more tollerated by people with wheat allergy. The free from products are full of not great ingredients so it is a tricky path. Get the gluten test and go from there.

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