Negative Enterolab Results, But Still Celiac?

[elye]

I am interested to know how many out there have had negative test results with Enterolab for Fecal Antigliadin, Antitissue Transglutaminase IgA and Quantitative Microscopic Fecal Fat Score, and a consequential positive dietary response with the gluten-free diet. Said plainly: has anyone had a false negative with these Enterolab tests? I keep hearing about how accurate stool testing is, much more reliable than blood and/or biopsy readings. My dad, whom I am certain has trouble with gluten, got Enterolab results of 6, 5, and <300 respectively. Undeniably negative. But I remain unconvinced. Anyone else figure they are gluten sensitive/celiac, after negatives like this?

[jitters]

My husband, daughter and I all got tested through EnteroLab. I am the only one who has obvious problems with gluten, and have a positive family history of Celiac Disease. I was really excited to get the results to *finally* have proof to my friends and family on my husbands side that I wasn't crazy. Long story short my husband and 3 year old daughter both came back with a fairly high positve, and I came back with a negative for gluten intolerence. I had been eating gluten too and was in BAD shape, neurological problems, skin issues, digestive issues, etc.

Its been about 15 months now and for awhile after my testing I went into gluten mode. Ate whatever I wanted whenever I wanted. I was fine for a long time but I am paying the price now!! I have so many issues that my doctors cringe when I call for an appointment. My fatigue and body pain are SO bad that I can't do anything, and my kids are paying the price. My doctors obviously don't believe me and have told me its postpartum, low iron, etc. I had my baby over a year ago. It is NOT hormonal. I've been gluten free again for almost 4 months again and have seen a huge improvement, although I have to now give up so many more foods while my guts heal. Coffee being the hardest to give up, but it causes me fatigue, pain, and rage. I have no choice but to give it up until I heal- who knows when that will be.

I know its frustrating to get a negative when everyone else has positives, but keep going gluten free if that helps you. My mom went gluten free almost 15 years ago, at the time no one had heard of gluten and everyone thought she was a nutcase. I figure that if she can do it, I can do it. Especiallly now that more people are aware of it, and a lot of foods are labeled gluten free.

My advice to you is to go gluten free now. Do what makes you feel better. And remember it can take awhile before you do. I went "paleo" with my mom for about 3 months and I've never felt better in my WHOLE life, even when I was a kid. Sometimes you have to go drastic to get great results.

I've been rambling on long enough now, and have probably told you everything you already know. But yes, I believe even Enterlab gets it wrong.

[Cinnamon]

My 11-year-old had a negative Enterolab result, and I was shocked because I was so sure it would be positive. His symptoms were mostly neurological, so I don't know if that's why the test was negative. I'm thinking he may have low IgA levels too, so that would make a false negative. But in any case, he's made a dramatic recovery on the gluten-free diet, so that's the result that really counts. Even his doctor said that a positive dietary response is the best test there is. Maybe you could persuade your Dad to just try the diet out for a set period of time. Contemplating a gluten-free diet for the rest of your life is pretty daunting, but if he has a set period of time to try it, he might go along with it. Then if he feels better, he'll see for himself that he needs to be on the diet. Hopefully he will feel so much better he'll want to stay on it, if in fact that is his problem, and if it isn't, then at least you've ruled it out.

[elye]

Oh, man, I do wish things were that simple...dad would willingly try the gluten-free diet, but he and my mom are now living in a retirement home where they have all of their meals and snacks provided in their big dining room. The kitchen will provide a gluten-free diet for the residents (there are two seniors there who are on it) but they need "documented proof" of the disease to proceed with the diet, I guess because it is more expensive. It just isn't practical for me to be cooking all his meals--we have to let the residence provide their food. I just wish they would take dietary response, which we all know is the most accurate, as an "official" diagnosis. Sigh..........

[fedora]

hi,

My tests were positive thru enterolab. I would have been confused if they had not been. They were very friendly and helpful when I called. Personally, I would call. EVERYONE makes mistakes. I would say, I DO have a problem with gluten. I think your tests may have messed up on my sample. Would you be willing to redo this? If they are hesitant, remind them you would be hesitant to recommend them without verifying your results since you do have a gluten reaction. Especially since you have family members and a daughter with positive results.

Your reaction may be from a IgE antibody reacton. Have you had traditional allergy testing done. Also, the gluten reaction may not be from and immune antibody response. It could be that you have another problem which causes a non antibody reaction. such as leaky gut.

Good luck.

[jmcbride4291]

Havn'e used enterolab yet but read the following.Many times I have seen many of the forum members stating the diet has made no change and what is wrong. Leaky Gut Syndrome causes gluten intolerance and many other intolerances. Infact Celaic disease can cause this. Both of these diagnosis are often not thought of or rejected by Dr.s. In a nut shell, Leaky Gut syndrome is when there is enough damage to the digestive track, that food and liquid particles are leaking directly into the bloodstream. This can cause a host of problems. Your parathyroid could become over active. This is four glands located behind the thyroid gland, which relases a parathormone which triggers calcium to be extracted from bone to balance out the acid levels in blood. If you drink something acidic, it will drive the gland crazy because some of the acid will go directly into the blood stream. Your head and nose could get hard, bones hurt, and urination will become frequent due to the kidneys unloading the calcium. Every effect from Celaiac's disease and then some you could have. You also get a pain in left chest, (non-cardiac related), skin could hurt, cannot take smells and sound and sensation is altered. With this you alsio cannot handle gluten. It will mess you up real bad. Just like many celaic patients, no milk, sugar, canned fruit, caffeine, acidic foods. Actually your diet becomes even more sensitive then with Celiacs disease. It takes roughly 4-6 months to heal with proper diet. You will feel very lousy while you have this due to your immune systems attacks the food particles as they are foreign bodies. There is no magic pill. It is caused by celiac, alcohol, spicy foods, diet in general. Like I said Celiac can cause this, however it is like the chicken and the egg. Which came first? One causes the other, although in Leaky Gut Syndrome, after repair in theory you might be able to go back to gluten, though I feel perhaps being gluten free is a good thing, and in the future, with politics and greed out of the way, they might find out humans and gluten may not be such a good thing. Anyway just wanted to post this to help with those still having problems. There is much more info. I suggest you research this and take the appropriate steps to feel better. Also check for a Parathyroid problem.

[dally099]

i can sympathise, i too was negative by 1 point on my entrolab testing, i do however carry the gene and the dietary changes are incredible. i would phone and talk to the nurse there. im very lucky i have a great GP who considers me celiac, i went to him a very sick rack of bones, he said give it a try and when i feel better go off the gluten-free for a week and see how i felt. well let me tell you it was a long and terrible week. it must be tough for them when they are living somewhere that will not accomidate them. i guess you have to be his advocate on this one. GOOD LUCK!!