If coeliac blood test is negative what next?

[AtYourCervix]

I finally went to the doc a couple of weeks ago about my poor irritable guts.

I've been 'irritable' forever. It's worsening bit by bit as I've got older. To the point where I'm constipated and diarrhoeaish over and over hour by hour.

bread is definitely a trigger. Pasta too.

Doc ordered blood test (TTG) and i've started taking mebeverine. The mebeverine isn't making the slightest bit of difference - actually giving me different gut cramps.

i'm thinking ahead - what do I do if the blood test is negative?

In fact what do I do if it is positive?

If it's positive, cut out all gluten containing grains (and don't replace them with gluten free fake products!). Read the label of every food item you eat. Cook from scratch.

It it's negative, cut out all gluten containing grains (and don't replace them with fake gf products). Read every label... Yes really!

After a month or two reintroduce the grains one at a time, and see what you react to. Repeat with dairy products and nightshades if your guts are still feeling unwell.

Positive or negative, you might want to read sites like Marks Daily Apple, Robbwolf.com and Wheatbelly blog... There is lots of info on doing exclusion diets and what to eat, how to improve your gut health. If you have a positive result, these are great sites as EVERYTHING is gluten free and it will help you get used to a new way of cooking.

Ummm, , I think I may have read you op wrongly! I assumed you meant a ceoliac test with all that talk of bread and ibs, but is that what you meant?

Yes. That's what I meant. Thanks.

Urgh. It's going to be hard work either way isn't it.

Celiac test came back negative for then 3yr old ds. But bread, pasta and white potatoes are all triggers for him rolling around in the floor screaming with tummy pains then running to the loo at intervals with diahorrea.

We've cut those foods out and substituted with whole meal bread and sweet potatoes.lots of fruit and veg.

The doctors can't find anything and now call it 'diet managing' and say it was mild constipation that he's grown out of. That's after two years of pushing. I'm exhausted now. So long as we can manage it at home and he's not in pain I'm ok to do so but not entirely happy at the lack of sympathy from the consultants.

Yes, but not for that long actually, for a month or two you think you can't eat bloody anything (and at first you might even feel worse but only for a few days), then it kind of normalises a bit, although it took me quite a long time to not feel a bit p'd off that I couldn't eat "normal" food out and about but now I'm fine with it.

The health improvements have been so massive that it's well worth it.

First, if the test is positive do NOT under any circumstances immediately cut out gluten. You will need a biopsy to confirm the diagnosis and you must be on a gluten containing diet to get an accurate result. They will be looking for gluten damage to the villi.

If the test is negative then read this: coeliac.proboards.com/thread/5/low-iga-false-blood-results and discuss it with your doctor if you feel it is a false negative.

If it is positive then you will find an amazing amount of useful information, recipes and help here: members2.boardhost.com/glutenfree/ There is also a lot of archived material here: coeliac.proboards.com/

If it is negative and you don't feel it was a false negative then it is a question of keeping food diary and adding/removing one thing at a time and looking for a pattern in your symptoms. It takes time but it is really, really worth it.

Sorry third para should start "If it is positive and confirmed by biopsy" - those links will really help you if you are to go glutenfree (and it's not as difficult as it first seems).

Negative for coeliac means not enough antibodies found to be above the diagnostic threshold, of no damage seen on biopsy - but you can still have it. Some people have several tests over a period of time before they test positive.

But gluten isn't the only problem with grains, you can react to various proteins in them, or metals in them, nickel from milling blades and rollers contaminate fine flours enough to make sensitive people react.

Potato skins bother a lot of people, usually baby potatoes are ok in moderation (I have to watch portion size with all the nightshades but the younger/sweeter the potato, tomato, aubergine is, the less likely they are to cause upset). But sweet potato is nicer anyway!

I'll phone the doc on monday foe the results. Then be back to panic and plan what's next.

Even if your blood test is a true negative doctors are now starting to realize there is also non-coeliac gluten sensitivity where people get all the symptoms of coeliac disease but there is no damage to the villi. Also as RawCoconutMacaroon has said some people are tested over a period of years before having a positive blood and biopsy - but that would mean you had to stay on gluten and continue feeling rough.

You might find the FODMAP diet helpful - it avoids foods which ferment in the gut though it is just a guide since everyone is different. I, for example, can eat brussel sprouts but not broccoli which are both on the OK foods list (though broccoli has a warning about portion size). Hope you start to feel much better soon.