Can I still be celiac with two negative test results?

[jcolquhoun1992]

Hello everyone,

I have been tested twice for celiac's disease and both times it has come back negative. I have had a colonoscopy and endoscopy and the results were said to be normal, although in that instance, they weren't specifically looking for celiac's. I have a sister and grandma who both have celiacs. I present with these symptoms when I am eating a standard diet with pasta/toast/oats/breads etc which I have cross checked and most of these apply to celiacs. They include:

Itchy eyes/skin/face

Acid reflux

Chest pain

Diahorea

Bloating

Appendicitis (bought on from bouts of severe stomach cramping/diahorrea)

Random unexplained groin pain (endoscopy was clear)

Mouth ulcers

Brain fog/ memory loss

Mood swings

Depression

Irritability

Bloating

Blood on toilet paper

Stabbing pains in stomach

Throbbing pain in my neck

Produce heaps of saliva/flem

Tingling in arm

Nausea

Sore throat

When I eat a strict meat and one vegetable diet only my symptoms mostly go away. I started eating pasta, toast and pizza the last two weeks to carbo load for a triathlon and now I have painful mouth ulcers and feel extremely sick/fatigued. Is it possible that I've been misdiagnosed twice? Or it could it be something like IBS?

[Sweatyfaced]

Seems unlikely it would be missed twice but if you had reduced / stopped your gluten intake before the tests, this can give a false negative. You need to be eating about 10g gluten for three meals per day for six weeks prior to the test to ensure it's accuracy (your doctor should have told you this - in particular the blood test requires high levels of gluten in the diet to be accurate).

Personally, with such bad symptoms, you need yo think about whether it's worth putting yourself through another intrusive set of tests? (For me, even though I had a positive on the blood test, I was still put through an endoscopy which I found pretty traumatic. And i had to continue with the gluten, even though we knew!!) You could have coeliac disease but it could also be a gluten intolerance or IBS. If just cutting out gluten makes the symptoms go away, you might want to do that (you can eat more than meat and veg, I promise you. Try brown rice for carb loading for your triathlon!).

If you are still having problems and cutting out gluten doesn't work, I would head to the doctor again... I have secondary lactose intolerance to the coeliac so it was worth knowing that. There are also things around bone density, fertility, and the diseases' relationship with other conditions such as DH, type 1 diabetes, arthritis, lupus etc. You might also want a formal diagnosis for insurance purposes etc (life and health insurance premiums would change with a diagnosis). Best of luck with whatever you decide and with the triathlon!!

[jcolquhoun1992 in reply to Sweatyfaced]

My doctor never told me that I had to be eating a set amount of gluten for the test to show up positive. I saw him twice once the symptoms got really bad but by that stage I had cut gluten out of my diet because of the symptoms. So frustrating! A girl a work told me that information recently and now I'm worried to try the 'gluten challenge' because of the effects it has. It's hard for me to stay disciplined because the symptoms come and go. I eventually convince myself there is nothing wrong because the tests are negative and I get lazy! Then the cycle happens again!

[honjen43]

Agree with sweatyfaced. You may have had 2 false negatives if you were on low/no gluten diet at the time.

Yes. There is much more you can eat than pasta to carbo load for a triathlon! Don't forget the good old boiled potato! Have seen them disappear amazingly fast when supplied by the bowlful during a cycle race.

Also bananas. Some cans of baked beans will be gluten free too. Check all labelling for ingredients before you buy. Find a good online dietitian for advice on what you can eat. Once you get your head around the diet you will find life much easier!

Regards

Jen

[Penel]

Perhaps have a look at the Low FODMAPs diet if you end up ruling out Coeliac disease? It seems to be helpful to many people with IBS.

[CATRYNA49]

It is quite possible that you have been misdiagnosed. It wouldn't be the first time. Start managing your food intake, again, first getting rid of gluten and see what happens. Give yourself a month. Sometimes we have to take matters into our own hands, since doctors and testing are often wrong or inconclusive. Be your own detective/scientist; don't be afraid to experiment. You are your own advocate.

[Suzden]

Wheat allergy ! Does not show up like Gluten test

[KiwiBob]

Hi, I was back on normal food diet for only 2 weeks when I had the blood test down. The readings were though the roof.

[jox1]

you clearly have lots of inflammatory process going on in your body. specific testing for coeliac sometimes misses other inflammatory markers so you might want to push for a full test of all Ig classes - most GPS won't want to do that because of costs though. i would like bet that some of your levels will be off the chart. tbh in your position carb loading and extreme exercise is going to make things much worse potentially so perhaps try to moderate things a little - recovery from these symptoms will be a slow process. not what you want to hear I know. take care.

[DCopson]

You have to load up on gluten for 8-10 weeks for the blood test to possibly show positive results. You appear to be sensitive to gluten now but I think that's how Celiac starts. You could have a genetic test for Celiac and if it comes out negative than you don't have to worry about coming down with it. Then you can go see an allergist for possible allergy's but if the genetic test is positive than you'll have to load up on gluten for weeks before the test but let your doctor know you are doing this.