Confused About Testing: Blood Vs. Stool

[chlobo]

My daughter (4 yrs old) has had weird digestive issues for a while now. So through her chiropractor I had a GI function test done (via metametrix). It showed gluten sensitivity. So we had a second test done through enterolab, which also showed gluten sensitivity as well as dairy sensitivity.

I asked her pediatrician about the test and he said "he saw no value in it" but would be happy to do a blood test. We went for the test and they screwed up and did not get enough blood for the test and I was told we'd have to go back. The test was sooooo traumatic I'm not anxious to do that.

Then, since she had a gene, we decided to have my husband tested. He has similar issues to my daughter. His results, also done through enterolab, also showed gluten & dairy sensitivity. He has two celiac genes. He just sent the results to his primary care doc who said "Gluten sensativity cannot be detected by stool tests, although many uncertified labs claim to do so. It causes GI and neurologic manifestations. Food allergies in adults rarely cause rashes, and when they do, it is not something that's limited to the hands."

Is the stool test really reliable? If it is, why do allopathic doctors just dismiss it and its results? Does everyone test sensitive on the stool test?

Confused about this and I know my DH is looking for a way out of the diet.

[Ursa Major]

Your husband's primary care doc is wrong. By the time celiac disease testing of the blood is positive, the villi are usually destroyed and have caused leaky gut, which is why the antibodies are in the blood. Since the damage is in the intestines, it makes perfect sense that the antibodies would be detected in stool long before they can be detected in blood.

Those doctors who claim that Enterolab has no value are just ignorant of their methods. Plus, most doctors will dismiss everything they haven't learned in medical stool as quackery, even though a lot they've learned in med school really IS quackery!

Your hubby's doc doesn't even know that celiac disease is not an allergy! He appears to be quite ignorant of celiac disease. And yes, in fact, from what I have seen and heard, ALL rashes, eczema, dermatitis ARE caused by food intolerances.

My oldest daughter has five children. The three oldest used to have terrible eczema. The oldest so bad that she was covered in it from head to toe, looking (and feeling) like she was covered in scales. It was dreadful.

When at the age of two she tested positive (by a naturopathic doctor) to a dairy intolerance and was taken off dairy, she had gorgeous, clear skin within weeks. Her siblings (who had other intolerances, two of them to nightshade vegetables) had equally dramatic results.

Now that they are all gluten-free, none of them have any more rashes of any kind at all. The same goes for my second oldest daughter's two little ones. Both of them had rashes, which cleared up completely on a gluten-free, dairy free diet.

I had psoriasis before eliminating gluten. It is gone now. My youngest daughter had eczema, it cleared up on a gluten-free, dairy free diet.

And actually, when I get glutened, I will get little watery blisters ONLY on my hands. They are itchy and hurt, and might be DH (even though the ignorant dermatologist I went to claimed it couldn't be).

Anyway, just ignore the ignorant doctors and keep going with the gluten-free diet, you are doing the right thing.

[JennyC]

The doctors do not take Enterolab results seriously because the founder Dr. Fine has never published his results and I highly doubt that other scientists or doctors have tested the accuracy of his testing methods. This means that his claims are unproven. He has not taken steps to prove the accuracy of his tests to the medical community, as publishing a paper is one of the first steps.

Many people do believe Enterolab is great and provides accurate results, but this has never been proven. If your daughter is still on gluten I would redo her blood work. I know it's a horrible experience, but if you want her diagnosis to be taken seriously by doctors it is a necessary step. I would give her a week or so to recuperate and try again. I understand her pain. My son completely freaks out when his blood is drawn and it is hard on us as parents, however if she is diagnosed with celiac disease then periodic blood work will be a routine part of her life.

[chlobo]

Thanks for the info.

She's been "off" gluten & dairy for several weeks. I put quotes because we haven't been diligent about cross contamination & because we seem to have missed a few things (such as dairy in imitation crab meat). So she hasn't been entirely gluten free. Would this be good enough for theh blood test? Or would we need to let her eat gluten for a while to get a truly accurate result?

Also, what benefit is the blood test? If she tests negative it won't change the fact that we need to be gluten free will it?

[Cath4k]

I just wanted to add here that my oldest dd's gastroenterologist supports the Enterolab results. He did do bloodwork on her which came back negative, but he said that was probably because she was doing well staying gluten free. He also did a gastroscopy (he was taking biopsies for celiac and for eosinophilic esophagitis - if it had just been for celiac we wouldn't have had the scope done). We haven't had our follow-up appointment yet, but after looking at her upper small intestine he basically said he would diagnose her celiac no matter how the biopsy came back. He said only 1-2% of celiacs show up positive in the biopsy.

My pediatrician also has upheld the Enterolab results. Part of that may be because of all the information he has received about my oldest dd from the gastroenterologist. When my pediatrician saw the Enterolab results of my 2 yr old, he commented that he was celiac. When I said the 2 yo hasn't been "officially" diagnosed celiac, he said that was what the results meant. I will be seeing the 2 yo's pediatric gastroenterologist soon and we will see where he goes with it (different GI than my oldest dd's.)

Anyway - some doctors DO accept Enterolab. My doctors are not naturopaths/holistic/etc. My dd's gastroenterologist does seem to stay on top of all the latest information though. He talked extensively about all the myths about celiac disease and how much things have changed in the last few years.

I would suggest that your dh find a gastroenterologist. I would not expect the average primary care doctor to be on top of all the latest info in the specialty of GI. I would check to see if you have a local celiac support group and get recommendations from them (I did an internet search.)

Good luck,

Cathy