Negative Results

[lemonade]

I have had a blood test and a biopsy which both came back negative for celiac disease. How every the gasto doctor said that I am gluten intolerant and that if i were to stay on gluten i may have celiac disease. Is it possible to be diagnosed with celiac disease if both tests come back negative?

has anyone here been in the same position as me?

I will also be tested by enterolab, so well see what my results will be. Is it possible to have a negative biopsy and blood test but positive result for celiac disease with enterolab?

thnx

L

[penguin]

It is possible. Blood tests aren't that sensitive, especially if you weren't eating gluten before the test. And with the biopsy, the small intestine is 22 ft. long and the endoscope only sees 5 ft of that. It also depends on your dr, how many samples he took, and how the lab interpreted it.

Even if you're only gluten intolerant, the treatment is the same. Gluten free diet for life.

(((hugs)))

Good luck!

[Rachel--24]

Enterolab cant diagnose Celiac Disease but the results will definately tell you if you're gluten intolerant. Did you order the gene test? If you end up having a Celiac gene you could assume continuing to consume gluten will eventually lead you to Celiac.

[lemonade]

Thanks for the replies,

I ordered the compete test package from enterolab

L

[Guest nini]

my opinion is that POSITIVE DIETARY RESPONSE is THE MOST VALID diagnostic tool there is. The blood tests and biopsies can only confirm it. They CANNOT ever say that they are completely negative. There are too many unknown factors still. Too many people that have gluten intolerance or have developed full blown Celiac after having negative tests and being told they could continue eating gluten.

Ultimately, your body is the best tool. Listen to it. If your body tells you it feels better off of gluten, even if it's not 100% better, listen. I had a positive blood test, but chose not to have the biopsy. My blood test results were HIGHLY conclusive along with my symptoms and my incredible positive dietary response. I've been gluten-free for 3 years now (end of March) and while I am mostly better, since I went undiagnosed for 33 years, I still have many health issues I'm dealing with. But I can tell without any doubts that my body reacts VIOLENTLY to gluten. And this is without a so called gold standard biopsy. Again, I repeat, Positive Dietary Response is your most valid diagnostic tool, listen to your body!

[lemonade]

thanks for the reply!

[yunalesca]

Hi Lemonade, sorry you didn't get the results you were hoping for - I know how disappointing that is. It might be a good idea to get the blood tests rechecked at a later stage if you don't find out anything definite. I had been tested (blood test) in early 2004 (although I didn't know until later) & it came back normal, and later in 2005 I had 2/3 levels positive. I'm still without diagnosis but I'm going to try a gluten-free diet and hope I feel better. Hope the enterolab is more helpful

[tiredofdoctors]

Here's the skinny on the "Gluten Intolerance": A. You can be gluten intolerant without having Celiac Disease B. You can't have Celiac Disease without being gluten intolerant

It's kind of those set/subset things!

[teankerbell]

Yes my blood test was negative. Stool test was positive for gluten sensitivity, the celiac gene and casein.

My doctor says that the blood test and biopsy are not always reliable, no test is. He feels if you feel better getting off gluten, then you have your answer.

Good luck.

[CMCM]

I agree with the others. My blood test came back negative. But thru Enterolab I got very positive results and learned I have two genes, one for celiac and one for gluten. Either way (i.e. with gluten OR celiac genes) the "cure" is the same: don't eat gluten. They can both make you sick. And ultimately, Nini is right....the answer is in the diet. If eating gluten makes you sick, why continue with it?????? The answer is actually quite simple! And the positive thing is, NO DRUGS are necessary to "cure" you!!

Enterolab also told me I was casein sensitive, and on my own observation I think I'm also lactose intolerant. But because of the casein test results, Dr. Fine said I should not have dairy either, and that continuing to eat casein I could also damage my intestines in the same exact way that eating gluten does. So the message is clear: It's all in the diet, and you need to take any sensitivity seriously.

By the way, as one book I'm reading states: If you stop eating gluten, your intestines heal and you no longer have celiac disease....you just have the predisposition to it if you added back the trigger, which is gluten. Remember that celiac disease is actually the term given to the observed intestinal damage seen via a biopsy. Gluten sensitivity is a huge spectrum of reactions, ranging from none at one end to celiac disease at the other end. And all celiac disease starts as gluten sensitivity, although apparently not all gluten sensitivity will lead to celiac disease (the damage). But BOTH can create the same unpleasant symptoms, which is why for both the prescription is identical: don't eat gluten!!

Another interesting factoid: Celiac disease is the ONLY autoimmune disease in which the environmental trigger (gluten) is identified and known! So other autoimmune diseases most likely also have some sort of specific trigger...scientists just haven't yet figured out what the trigger is. The other thing to remember, however, is that when you have one autoimmune disease actively occurring...such as celiac disease....you open the door to others, such as rheumatoid arthritis, lupus, etc. This is why it's so important to get a handle on this and stop eating gluten!!!