Test Negative...

[Bleigh]

I just had my test come back negative. My doctor order the IGG and IGA test. Are these the most accurate tests? I'm feeling a bit frustrated with these results as gluten products make me so sick. My symptoms go away completely on a gluten free diet.

Symptoms are: severe bloating (I look very pregnant), fibromyalgia, brain fog, geographic tongue (heals up on gluten free), diarrhea, stomach cramps, gas, anxiety, edema, constant post nasal drip, sometimes I get chills and nausea if I've eaten a heavy gluten dinner (not fatty), rapid heartbeat and palpitations after eating, lactose intolerant.....sounds crazy just writing it all down. OH, I also have high cholesterol and high triglycerides unless I'm on a gluten free diet. I am about 30lbs overweight and the only way I can lose it is if I'm gluten free.

I guess I was hoping to be validated by the blood tests. Doctors don't seem too concerned or interested so I really don't go to them about the GI problems. I've tried to explain my issues before and was just dismissed. I had done low carb (no grains) in the past to see how it would work for weight loss and lipid improvement and realized all my symptoms resolved. Even cholesterol went from over 220 to just over 160 in a month. Triglycerides went down almost 150 points as well. This has happened twice so I'm sure it was not lab error. Both times I lost 15lbs in a month and b/c of this the labs were ordered so quickly.

Anyway, should I pursue another test? I'm so ready to be done with gluten and really don't want to maintain eating it for a doctor's appointment. Any advice???

Hope I'm making sense. My hands are stiff and my kids are hungry.....thanks for any help.

[sbj]

I just had my test come back negative. . . . I guess I was hoping to be validated by the blood tests. Doctors don't seem too concerned or interested so I really don't go to them about the GI problems.

Maybe you don't have celiac disease? Perhaps you are gluten intolerant and that's what is causing your symptoms. If that is the case (you are gluten intolerant but do not have celiac disease) then you will never be able to get a diagnosis - it can't be diagnosed (yet).

For validation ... you have all you need! You've responded marvelously to the diet so just go with that and be healthy.

And as far as your doctors not listening - get a new GI! It's unacceptable for a doctor to dismiss symptoms and it violates their oath and I'm sure violates the policies of the company they work for. I'd report this to the responsible medical group, medical facility, and to your insurer immediately.

[mushroom]

Hi, and welcome to the forum. The one thing you didn't tell us was how long you had been eating gluten before you were tested. You need to have been constantly eating gluten for 2-3 months for the tests to be valid, and even then there can be false negatives.

[elye]

Many sources state that upward of 30% of blood panel negatives are false, and I have read even higher percentages than that. I truly believe that the only really accurate diagnostic tool for celiac/gluten intolerance is dietary response. My husband's blood panel was "negative", his biopsy was "negative", and he finally got a high positive on the stool test. After going gluten-free, all of his symptoms disappeared.

You certainly sound as though you have trouble with gluten. I think you have your diagnosis - - you go off gluten, your physical problems disappear. I'm not ever willing to believe that this is a coincidence!

[ravenwoodglass]

Anyway, should I pursue another test? I'm so ready to be done with gluten and really don't want to maintain eating it for a doctor's appointment. Any advice???

If I had waited for a positive blood test my celiac wouldn't have been found until my autopsy. Which would have undoubtedly taken place by now. As mentioned false negatives on blood and biopsy are certainly not unheard of.

You don't need a doctors permission to eat gluten free so if you know you have a problem with gluten go gluten free. When you see your doctor for a checkup and he remarks about how long it has been since he saw you and how well your doing then just give him a smug look, smile and say

"Yea that's what being gluten free has done for me"