If The Blood Test Comes Back Negative

[zjune]

I was just told my blood test came back negative for Celiac. I know that I cannot eat gluten and it is the cause for many problems I have been having. I have been eating gluten free for 6 months and have noticed a real change. Every once in a while I start to feel depressed and have stomach problems (i think when i somehow consume some gluten). Should I go to a doctor anyway to see how bad the problem is? I know that staying away from gluten is the only solution.

[CarlaB]

Your blood test was probably negative due to the fact that you've been gluten-free for six months. At this point, if you want to know for sure, you'd have to eat gluten and lots of it for several months to be retested.

I would just continue to eat gluten-free since you have your positive dietary response showing it's a problem for you. My ob/gyn ran some blood work for me last year so I could see how I was doing. I told him how all my tests came out negative, but I felt better gluten-free. He asked why I kept looking for clinical proof, the dietary response is clinical proof!

I don't think there's any point in differentiating whether you have celiac or gluten intolerance. They both have the same cure.

[CMCM]

You have observed that you feel better gluten free. That is the most revealing thing! There is far too much emphasis on a search for existing celiac disease at the expense of ignoring the much much MUCH more widespread problem of gluten sensitivity. If you have been minimizing gluten, or not eating it at all, there simply may not be enough antibodies to show up in the blood. I just saw a DVD of a conference from last summer which featured a doctor who has specialized in celiac disease for 20 years. He said gluten sensitivity is an EPIDEMIC in this country. He said for every ONE person diagnosed with either celiac disease or gluten sensitivity, there are EIGHT who are never diagnosed. He said most doctors operate with outdated and OLD textbook definitions of celiac disease, and they are unaware (how about using the word "ignorant") of all the newest studies and research. He said gluten sensitivity is just as problematic and potentially damaging as celiac disease. If you "only" have gluten sensitivity, the blood test will not show that. This is the crux of the problem!

If you want to spend $369 of your own money, I'd suggest going to Enterolab and doing their full sensitivity panel. This will tell you if you have any autoimmune antibodies being produced in your intestines, which is where everything starts. Getting into your blood is a longer route, but the antibodies are right there in your intestines, and can be detected long after you have stopped eating gluten (so no gluten challenge is needed). With this test you will also learn whether or not you have a celiac gene, or merely the gluten sensitivity related genes. Most of us (they now think about 80% of us) are gluten sensitive, which is why so many test positive with those genes. This test will also tell you if you have malabsorption, which could be indicative of celiac disease (particularly if you have the celiac gene). And finally, you will learn if you are casein sensitive....if you are casein sensitive and continue to eat dairy, you can also create many of the same types of symptoms as gluten sensitivity, and you can also incur tissue damage from eating it.

The key from this DVD lecture I listened to was that gluten SENSITIVITY and/or celiac disease can BOTH cause problems 1) in the digestive tract 2) neurologically 3) can cause your "weakest link" in your body to have problems...for example, autoimmune thyroid disease, gallbladder problems, pancreatic problems, rheumatoid arthritis, skin problems such as psoriasis, headaches, and the list goes on and on.

This doctor feels we have put way too much emphasis on getting a doctor's "stamp of approval" on our having celiac disease (or not). But how can someone who knows virtually nothing about this tell you yay or nay anyway? The answer is, he CAN'T. He just uses his outmoded textbook knowledge to do the blood test (and often they don't even know exactly which tests to order!!!), and if the test is negative, they say you don't have a problem, go eat wheat!

We have to take a LOT of the responsibility for this upon ourselves. So one thing is to do what I did....I spent the $$$ on the Enterolab tests because they were relatively cheap and provided some useful information. They did NOT diagnoses with celiac disease, but they showed me my symptoms had some solid basis in reality and that I had predisposing genes. Beyond this basic knowledge, the most important thing is THE DIET!!! If you improve on the diet, that's the important thing. Why would you continue to eat something which makes you feel bad in one way or the other, and which new information tells us can cause serious bodily damage if ignored! 25% of celiacs are diagnosed at age 60 or over....but meanwhile, for 60 years their body has been slowly damaged by eating gluten. And this is just CELIACS....imagine all the gluten sensitive people who are never diagnosed but who also incur all the body damage and who may die far too young because of this. And think about all the "silent celiacs" who don't manifest enough symptoms to ever seek help....or who have diseases of other organs (such as gall bladder disease) but who never learn WHY they actually had the problem with these other organs. The fact is, most gluten sensitive people never know it! But all their lives, their health is compromised because they eat gluten.

A final twist is that you can actually have celiac disease (as shown on a biopsy) without having the thus far identified celiac genes! I've also read about celiac disease being triggered by other things (the case I read about was from exposure to toxic molds). Not all celiac genes have been identifiedm although most seem to have either DQ2 or DQ8. Having the celiac gene doesn't guarantee you will get celiac disease, but the likelihood is greater and it's good to know if you have the gene. Celiac disease gets triggered by something if you have the gene....usually this is the case. Sometimes it is never triggered. But still, before celiac is triggered you can still have gluten sensitivity which is causiing damage. My mother is celiac and we just tested her....she has 2 celiac genes, which immediately ensures that all her children have one. Since she has 2 genes, that means my grandmother also had one! My grandmother never seemed to have celiac disease, and she lived until 99 (!!!!), but she did have arthritis. My mother, on the other hand, was diagnosed after her celiac disease was triggered after surgery (she got very sick), and that was at about age 48. She has been gluten free since 1969, is now a very healthy 86, and has no real health problems.

[Guest cassidy]

I agree, if you blood test is negative, any other tests would probably be negative as well. I tried the doctor route after my negative blood test and the suggestion to start eating gluten for a few months and then get re-tested sent me running.

Since celiac isn't something that needs to be monitored like high blood pressure or diabetes, you should be fine just staying on the diet. If you have other problems down the road then you might try going to a doctor then. Now, when I go to the doctors I tell them that I was diagnosed with celiac 1 1/2 years ago and go on with my new problem from there. I tried recounting the "not diagnosed story" but that just led to them doubting it and going over getting diagnosed again and I didn't want to go there. When I acted like the diagnosis part was in the past, no one questioned it. To me, the dramatic change in my health due to removing gluten from my diet is a positive diagnosis. Plus, my mother, uncle and cousin are all off gluten (none of us diagnosed) so I think we are all on the right track.