Celiac Tests Are Negative

[Eric80517]

I have been to the doctor the last few weeks and the test for my celiac test cam back negative. Although my doctor said that I may be gluten sensitive? What does this mean and do I still have to be carefull about what I eat. I still have neuropathy on my left arm; wierd feeling that gets better and worse. I also have a really bad geographic tongue. Anyone with any information?

[hathor]

Which test or tests were performed?

Here are a couple articles about gluten sensitivity:

https://www.celiac.com/st_prod.html?p_prodid=1417

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If you are gluten sensitive, you have to avoid gluten every bit as much as a celiac would.

Think of it this way. Celiac is a subset of gluten sensitivity. The former means that there has been damage to the villi (or the presence of a distinctive skin rash). Before the villi have been damaged or if the gluten damages the body in another way, a diagnosis of celiac is not made but there is still a problem.

Be glad that your doctor recognizes that there is more to gluten problems than celiac.

At this point, you could try for Enterolab testing. Or you could try going gluten-free and see how you respond.

[Ginsou]

Blood tests for celiac are not always accurate. My blood tests were normal, yet I was in severe abdominal pain on a daily basis and had stinging, stabbing pains in the abdomen and arms and legs.I had the Enterolab tests done. My results were positive.....tests were not terribly elevated, but the gene test showed both celiac gene and gluten sensitivity gene....also a casein problem. A gluten free and casein (and lactose free since I am also lactose intolerant) free diet has done wonders.

Your doctor sounds like a good one. My GI told me ahead of time that the blood tests were not accurate, but I wanted them anyway.

[happygirl]

Yes, definitely interested in which tests were performed. The full panel is five tests.

And, you can still have Celiac (seronegative blood work) or you can have a non Celiac gluten problem. The main way to tell will be to go 100% gluten free and see if it helps resolve your symptoms.

[Eric80517]

Thanks for the help. My doctor has told me to go gluten free and it has been extremely difficult. I lost about 10 pounds in the last 3 years. The other wierd thing is the geographic tongue. The bad stomach frequently isn't fun and ever since I cut back my beer intake and other gluten related products I have felt a bit better. As my doctor said the hardest thing would be to accept the fact I have a gluten sensitivity. Meals are a little bit of a challenge but I have a great wife who is an excellent cook.

The other question I have is if this sensitivity comes sudden or gradual? and Can you still eat some gluten products without over doing it? Thanks again.

[mommyagain]

Sorry, 100% gluten free is the only way to make the diet work. Most people actually get MORE sensitive to it the longer they are on the diet... that's not a bad thing, it just means that your intestines have healed to the point where being damaged in no longer their normal state!

A lot of people go "gluten-light" initially, mostly because they aren't very good at reading labels yet. Most of those people get a little better, but the problems never completely go away until they are 100% gluten-free.