I've been reading this list for awhile but have not posted yet. I was very interested to read this thread about Enterolab. Almost my entire family has been tested through Enterolab because of my search to feel better. My grandma was diagnosed with Celiac when she was in her 70's after about 50 years of intestinal problems. She died of non-hodgkins lymphoma a couple of years ago, in her mid-eighties. I don't believe she ever followed the diet the way she should have. I've had all of the conventional testing with negative results, some twice. I got the Enterolab test this summer as did my dad (because he has psoriasis) and I tested positive for IgA and ttg and casein and malabsorption. My dad did also. I have one celiac gene and one gluten sensitive gene and he has two celiac genes. After I found I had two genes, meaning I got one from each parent, my mom was tested. She has one gluten-sensitive gene and one celiac. One brother has two celiac genes, no malabsorption but 20 years of depression which may be related to gluten. We all tested positive for IgA. My other brother didn't have the gene test, just the stool and he is positive for gluten sensitivity and was shockingly high on malabsorption--1500. Any suggestions on what he should look into other the gluten sensitivity as to why he is malabsorbing so poorly?
I'm planning on doing a gene test on my kids but haven't yet because of $$. I think I am going to have them go ahead and go gluten free---they are just not feeling well far too often. Also, my house needs to be totally gluten free since I am turning out to be very sensitive to gluten contamination. I also want my husband to be tested since he has other autoimmune disorders that seem minor but maybe they are just symptomatic of gluten sensitivities---a skin disorder and canker sores.
I took my Enterolab results to my general Dr and he admitted he knew nothing about celiac disease (at least he didn't act like he knows everything) so he referred me to a GI. I ended up going to Mayo because I had already been a patient there and I love that you can get everything done quickly with quick results. Unfortunately, they didn't run the complete blood panel (only IgA and IgE) and only took 4 samples during the endoscopy. It was a very costly mistake for me---my insurance paid $500 out of $5000. Just think, I could've had my entire family tested through Enterolab and bought LOTS of healthy foods with that money. I haven't complained to Mayo yet but I intend to. Oh, and my doctor up there (with my Enterolab results in hand, mind you) said I had no problem with gluten and I could continue to eat it. I can't tell you how frustrated I am with doctors right now.
Unfortunately, the gluten free diet hasn't taken care of all of my problems but has made me feel MUCH, MUCH better. I still have upper right quadrant abdominal pain (constant for over a year except for the times I've taken low-dose anti-depressants that mask it for awhile) and I really think it is unrelated to gluten. Either that or it is going to take more than two months being gluten and casein free to resolve itself. My GP has no other ideas for tests or specialist consults for me--just a prescription for an anti-seizure medication for the chronic pain. I researched it and decided it wasn't something I want to put into my body. I am looking into a naturopathic or holistic doctor to help with that concern. I feel like I've exhausted all of the 'normal' routes for medical diagnosis.
All of that to say, I think Dr Fine is a Godsend and I hope in the very near future that he will publish so this testing can be more readily accepted and available. Unfortunately, that will probably make the cost for this testing rise. I guess I'm getting a little cynical about the medical community. In all of my testing, the best $ I spent was on Enterolab and probably the least expensive--my husband is self employed so we don't have the greatest insurance.
Thanks for 'listening',
Neg biopsy 10/04 AND 9/05
Neg bloodwork 9/05
Postive stool IgA and ttG, casein and malabsorption through Enterolab 7/05