Coeliac test on Friday -any experiences? And if I have it should the kids be tested too?

[hattyyellow]

After years of low iron the doctors surgery phoned last week to say that they suspect I may have coeliac disease and they would like me to come in for blood tests on Friday to establish this.

Have been stupidly googling and worrying myself. A few questions if anyone can help..

I have stopped eating wheat since they rang on Monday, as far as I can I am still learning - so much has wheat in!

But will this skew the test results if I have not eaten wheat for a week? Or does it not work like that?

I have had for years what I thought was mild IBS, stomach cramps, bloated stomach after eating foods, constipation etc. On Saturday I did loads of baking, which I rarely do and we ate lots of cake. I had spent all Sunday feeling very irritable and bloated and tired.I wonder now if the two are connected..

And should the DC be tested if I have got it?

It's all making my head spin! I've just got stabilised on thryoxine since they found my thryroid was underactive last year and I feel like I'm falling apart!

Any advice and experiences greatly welcomed.

Sorry, two more questions if anyone can help! How long after cutting out gluten did you start to feel better? And if the blood test is positive for coeliac, do they always have to do a biopsy? It sounds a bit frightening..

You need to be eating a full gluten diet until all the tests are done - at least two slices of normal bread per day.

Some places routinely test children, some don't unless they have symptoms.

I started to feel better in a few weeks, but it took a year to feel totally right.

A biopsy is gold standard diagnosis - it really isn't that bad.

Coeliac disease and thyroid issues often go together, so don't feel you are falling apart

The diet sounds scary, but I've been gf for 12 years now, and travel the world, eat out in restaurants etc with no problems

Thank you so much, this is really useful. I feel a bit nervous about eating wheat again but I guess it makes a lot of sense. And we have a lot of wheat products that are my favourites to use up if it is a positive diagnosis!

That's really encouraging that you have managed it so well - thanks!

The blood test won't categorically state whether you are positive or not. You need to maintain your wheat intake (as has been stated) until the test has been done.

I had it done at Easter along with dc2&3. All were negative but we still have all the symptoms without actually having any official name for anything. In fact, I've been told that there's nothing wrong at all with dc . Shame the symptoms don't just disappear when doc says there's nothing wrong with them!

Good luck!

Button, celiac is the top of the gluten iceberg, my ds blood test was negative and rather than going for biopsy we went gluten free as I just HAD TO know, because he was so poorly, best decision I have ever made. Refused to go back on gluten after he started getting better, there is a major flaw in the testing as celiac picks up only the most severe cases and the problem is very widespread.
Found out since rather a lot about gluten sensitivity (no test will pick it up) and it took me years but have educated some very educated drs about the benefits of gf diet in our case. Then I met another dr who himself was dx celiac (after many years of being unwell) and described his experience as "nearly died" before other experts worked out what was wrong.
There is nothing to stop you ditching wheat, why on earth would you carry on eating something if it makes you unwell??
You wouldn't even get better eating just substitute prescription carbs, coz you need quality foods full of vitamins and minerals not cheap carb fillers.

Hatty, you really don't need to worry, gf diet is extremely healthy although it does need a bit of effort at first.

Sorry to ask a really odd question but you're not from the west of Ireland by any chance are you - or maybe your mother or father may have been?

The wierd thing is that gluten free didn't help. Avoiding wholewheat is a big thing - none of us can tolerate it in any way. You can imagine the looks I get sending them to school with white bread sandwiches every day esp as they both like jam in them!

I keep a food diary but nothing seems to make sense.

I know how stupid drs can be tho. My IBS was diagnosed after years of being treated for gynae problems. I KEPT telling them that I had bowel issues too but they said 'let's deal with the gynae pain first'. Turns out that gynae pain is v similar to bowel pain. Well, really? So I had all these investigations for nothing then? Oh yes!

Gluten free is less of a big deal if you make a lot from scratch anyway IME. The biggest thing was bread but after I realised that you don't actually have to eat bread and thought of alternatives then it was fine!

Thanks so much all, this is all really helpful to read of peoples experiences and challenges with a diagnosis.

Doodlez - yes my dad's family go back generations in Galway - is there a genetic link?

I was wondering as thyroid/coeliac being auto-immune and my dad had many health probs before he died including leukemia..

Irish descent and generally northern european gene pool often have the gluten-susceptibility.
The scary thing about gluten is that it often goes far beyond the gut and causes damage to other organs. From what I have read it can cause thyroid problems, seriously affects immunity and indirectly can lead to cancer )plus tons more).
You might find it helpful to look at other blood relatives and try to understand what might be linked. In my family we had cancer, severe gut issues, migraines, poor growth plus others that don't seem to be linked but were. And my ds had quite severe neuro problems, described as progressive and incurable. WWith gluten out they are not progressive now and some have even reversed.

Button, on wholwheat.. have you read about phytates?? Coz the bran heavily pushed as health food in fact not only blocks absorption of nutrients but in fact draws them out of the body. Good for the companies that sell it, but not for health.

You absolutley must be eating wheat before the test.

There are blood tests are OK but they sometmes show a negative even for a true coeliac. Biopsy of the gut is preferred but even then you should be aware that the tests do not always show a positive even if someone is coeliac. This is what happened in my case. After I had had the blood and biopsy tests I then went on a full gluten free and lactose free diet and the result was so dramatically better I never went back.

Ah, so with Irish family on my dad's side and Scandinavian on my mum's side - I've got fairly high odds on coeliac chances! Damned genes!

Been beta, is lactose intolerance often linked as well? I remember getting a lot of unexplained stomach aches as a child and doctors recommending avoiding dairy as much as possible..

Yes Irish and Scandi inheritance is a very good indicator.

Long term exposure to gluten eventually damages the gut to the extent that you become lactose intolerant as well. It can repair after being off gluten for a while but not always.

I certainly used to feel very sick after drinking milk. My Dad does too and I am convinced is undiagnosed coeliac. Both my DSs have issues with milk and think perhaps I should have them tested or try them on a GF/LF diet.

Hatty, afaik, gluten contributes to lactose intolerance as the cells that make lactase (which breaks up lactose in the gut) are the first ones that get damages by gluten, I believe they are on top of the villi in the small intestine.

The good news, once you stop eating it, it gets better, my ds, formerly dairy intolerant, can have some dairy now with no adverse effects.

Good book to read is Dangerous Grains by Braly/Hoggan.

PS. Various autoimmune conditions can improve on gf diet, unless damage is severe.
I reckon if you really want to show up as celiac, then eat as much wheat as you can?

The Irish connection in the BMJ

Lighter versions of the same info are available if you google.....coeliac, west of Ireland.

Never heard of phytates before - off to google them now.

I don't suppose you could recommend a decent plain english website talking about phytates? I'm not up with medical jargon enough to decipher a medical journal!

interesting , i have been diagnosed with IBS 3 years ago , i wondered if i to could have this , as get very bloated , odd BM and sometimes lighter i n colour sorry TMI ..

some pain ,

anyone els

button, Weston Price is a reliable website and lots to read :)

choclab, gluten sensivity is explained in wiki

Thank you nightcat.