Still Confused About Test Results

[hpymomof3]

My 14 year old was recently diagnosed as gluten intolerant by Enterolab. I'm a bit confused because her blood test came up negative. She has been several different doctors due to health problems and some say that she isn't gluten intolerant unless the blood test is positive. Several people have told me that if you don't have Celiac then you aren't gluten intolerant. My understanding is that Celiac is just when the intolerance has caused damage to your intestines.

My daughter's results showed antigliadin IgA antibody was elevated. She does not have high enough intestinal IgA antibodies to show an autoimmune reaction, which is strange because she has autoimmune symptoms. She also had a positive genetic test which shows that she has the gene predisposing her to both Celiac and gluten insensitivity.

I truly believe that my daughter is sensitive to gluten but I'm trying to figure out an explanation to tell other people how she can be gluten insensitive but not Celiac.

[sunnybabi1986]

As far as I know (which isn't much!), I was under the impression that gluten intolerance is when your body produces a reaction to the presence of gluten, making you sick. Celiac disease is the point at which the villi in the intestines are actually damaged and it is visible. I may be wrong, correct me if I am, but this is what I had read awhile back. I would tell people that your daughter tested positive to having an intolerance to gluten through lab work. Hopefully that will be enough to convince them? Good luck!

[Jestgar]

The blood tests won't be positive until you have done sufficient damage to your intestines. You can have symptoms before you are sick enough to have a positive blood test.

[hpymomof3]

Now people (doctors and others) are questioning whether or not the stool test is sufficient proof.

[Jean'sBrainonGluten]

Hi I was watching a good video on youtube about celiac.

It's a recording of a presentation by the William K. Warren Medical Research Center for Celiac Disease. In it the director, Martin F. Kagnoff, M.D., talks about different sensitivities to gluten

Celiac - classically the symptoms of intestinal damage and associated diarrhea, nutritional deficiencies, bloating, headaches, and failure to thrive in kids. In this case the blood tests will show high IgA unless there is a deficiency of overall IgA, which has to be tested for. There is also cryptic celiac with few or no symptoms, possibly negative labs and intestinal biopsy. If you did a genetic study these people have the markers though. According to a Mayo study some kind of damage is still happening because people with this kind die earlier than people without any response. Also, lab tests and even intestinal biopsy will be negative if the person has been on a gluten free diet.

Then there is Gluten sensitivity - same symptoms as classical celiac - gas, abdominal bloating and discomfort, diarrhea, headaches and so on, but blood tests are negative. He says at the end in the question time that since gluten molecules are huge it could just be a reaction to a different part of the molecule and wouldn't show with the standard tests. From the doctor's point of view they want to do all the tests including a gluten challenge of two months on gluten then repeating the blood work and intestinal biopsy. The treatment is just gluten dietary avoidance.

Finally he talks about wheat allergy which can be a reaction to other parts of the gluten molecules or other parts of wheat or can be mediated by a different part of the immune system - IgE or T cells. Again as doctors they'd like patients to do the full gluten challenge and testing but the treatment is dietary avoidance. The most dangerous type of this can produce anaphylactic shock in people who exercise after wheat ingestion (!).

Long story short...no test is definitive for all kinds of gluten or wheat reactions. Hope that is helpful.