Has anyone had their enterolab tests covered (or denied) by insurance? Also, if you already knew your gluten sensitive child was not dq2 or dq8 (by blood work), would you do the gene test? I'm really curious if we have a dq1! I'm interested in the malabsorption test for sure for both of us, and maybe the soy test. High $$$.

I did the Enterolab gene test soley out of curiousity. We'd been gluten free for over a year already, and didn't plan to change anything based on what we'd learn. I was just...plain...curious.

I think curiosity is the main reason to do the gene test, because I don't think it tells you much of anything about who may or may not benefit from the diet. What I mean is, I don't think anyone should rule out the possibility a gfd may help them just because they don't carry the main genes. And supposedly there is only one known gene type that doesn't seem to carry any predisposition to gluten sensitivity at all, and that represents just 5% of the population. So... I haven't quite figured out how valuable the gene testing is, other than to satifsy curiosty... but it was interesting to know my family fit into the 'other' group that Dr. H had also identified (HLA DQ1). I don't regret finding that out, and it helped make some sense out of few things.

Cara

The gene test results were the "kick in the pants" that I needed to try Tom GF. Based on symptoms, I was pretty sure he didn't have DQ2 or DQ8. He has two different versions of DQ1. We never tried submitting it to insurance. No doctor ordered the test, and I assumed insurance wouldn't pay. At some point, I'd like to test the rest of us. Mr. Kay doesn't want to be bothered, but I was thinking we might figure him out by the process of elimination.

I took Tom to a DAN! doctor (Defeat Autism Now!) two weeks ago, even though he's technically not autistic. We are now in the process of running food sensitivity and malabsorption tests among other tests, through the doctor. We are paying for these tests directly, and will submit the paperwork for reimbursement from the insurance. I'm not sure how much insurance will pay, but I know that this way (through a doctor, with diagnostic codes), they'll pay for some of it.

Not sure I answered any of your questions. I am curious about the girls, but the tests on Tom take priority. Gene results won't change a year from now. If you're curious and can swing the money, I'd go for it.

I tested with Enterolab last year, and found that I was DQ2. I had suspected that I might be GS, and the tests confirmed that.

Knowing the results made it easier to go GF.

I did not submit because I felt that my insurance would have rejected even though the codes were provided.

You might want to submit and maybe your insurance would reimburse some of the cost.

Marilyn

I ordered the Enterolab test because I could do it without a doctor's order. My deductible is so high for out of state lab testing, that my insurance wouldn't cover it anyways.

I was curious about my genes and if I was getting any gluten or casein reaction from an already GF/dairy free diet. I was also curious because there are some other health problems in my family that I have read are gluten sensitivity related (nephew with Asperger's syndrome, aunt with Sjogren's syndrome & lupus). All my results were negative for gluten, casein, and malabsorption, which was information that my digestive problems weren't coming from these areas. However, the gene test was the motivation (my results in my signature) to get serious about cutting out gluten from my diet as I was still getting some gluten here and there. Perhaps I can tolerate a little bit of gluten (like in soy sauce), but not a lot. I wish I had known about the testing before I went GF, but my genetic results led me to find BrainTalk and all the wonderful people here who are gluten sensitive.

Leslie once reported that Dr. Fine thinks that my DQ1 alleles are particularly sensitive when it comes to gluten, and having two copies is basically "double trouble". I would have never thought to e-mail Dr. Fine myself because I wouldn't have had a clue what to ask before getting educated from this forum.

Claire

One of the members of my support group had her doctor write a letter of medical necessity to the insurance company and got preapproval. I don't know how much they covered. I will have to ask her.

Anne

Thanks everyone, for your responses. I wonder why Dr. Fine can't "order" the tests for us? We are already GF, so that part really isn't relevant. I do wonder if we have the DQ1 gene, and it seems that I have had malabsorption issues which are improving with a GF diet and vitamin supplements, but again, I guess I just want validation. My biggest thing right now is the soy test. Ds has been off soy for over 3 months and doing well. I only did a 2-week soy-free trial on myself, which probably wasn't long enough. I've willingly given up dairy, eggs, meat, gluten, and junk food, but for some reason I want a "reason" to give up soy. LOL! My main "symptom" seems to be fatigue which is hard to measure!