I have not tried a rheum or llmd. I do have mthfr c677t (heterozygous) and many other heterozygous snps. I am ++ for Taq Fok.
My symptoms are actually limited compared to many people on these forums. I have been on antidepressants for years. Controlled horrible PMS using birth control for 27 years. Depression turned into anxiety, I became easily stressed. But I am managing that fine now by avoiding stressful situations. My complaint is - I just get tired easily. I get back pain, like lactic acid build up. I have to limit how much I do. I have geared down my life to just the basics. I do some work, then rest, work, rest. I have to lay down a lot and I sleep a lot. Luckily I am a stay at home mom. I don't think I could work full time like I used to. I think I was weakened by my twins' childbirth by cesarean and the subsequent exhaustion caring for them. Then took multiple antibiotics for illnesses including Cipro which ruined my gut. I gained weight so fast at one point my upper abdomen was hurting from being stretched. Friends thought I was pregnant. Its only been the last year and a half that I have tried to address this problem. I have lost 27 pounds.
Here is her response:
Nora Gedgaudas Jan--If you have been gluten free for more than just a few months, it may be virtually impossible to clearly identify your specific brand of gluten sensitivity at this point. You could go through EnteroLabs and do their genetic testing to determine whether or not you possess the HLA-DQ genotype associated with celiac disease or not. The best and most accurate, comprehensive and sensitive gluten sensitivity testing in the world, however, is through Cyrex labs-- and I often recommend people do their array 3 testing for gluten sensitivity-- even if they already consider themselves gluten-free-- because it can help confirm whether or not you are getting some form of inadvertent exposure. That said, I wouldn’t expect it to reveal much beyond that at this point. In a person that is still eating gluten-containing foods a combination of array 2 and array 3 can supply enough information to offer you about a 95%+ accuracy in identifying celiac disease.
Mind you (and I’m sure you probably already realize this), eight out of 10 celiac patients have no gastrointestinal symptoms at all, and the primary manifestation is most commonly with the brain and nervous system-- although it can literally affect virtually any organ or tissue anywhere in the body. Once you are no longer producing antibodies to gluten (which of course does not mean that it’s ever okay to go back to consuming it) it is unlikely that immunologic testing will reveal very much in terms of a celiac diagnosis.
Given your history, however, I believe it is well worth running a series of Cyrex labs arrays (if you can possibly swing it, Arrays 2 through 5… And maybe even Array 11) in order to:
1) Identify whether or not you have gut barrier compromise (i.e., a “leaky gut”)-- and also what the nature of that leaky gut is: whether it is strictly occluding/zonulin-based related to dietary antigen exposure OR whether it may be related instead to the presence of lipopolysaccharides (i.e., some form of dysbiosis/SIBO).
2) Whether or not you are getting some inadvertent form of exposure to gluten AND whether there is gluten-related tissue damage occurring or not. The Cyrex Array 3 panel (in addition to measuring different immunoglobulin types of reactivity to nine different epitopes of gluten-- fully eight more than anyone else tests for) additionally screens for the presence of transglutaminase enzymes, and even breaks this down into transglutaminase-2 (gluten related G.I. tract damage), transglutaminase-3 (gluten related epidermal damage), or transglutaminase-6 (gluten related damage to the brain and nervous system).
3) Test for 28 different foods commonly eaten on a gluten-free diet to see if you may have an undiagnosed immunoreactivity to them. 13 of these foods are known cross-reactive compounds with gluten that many individuals regularly consume on a gluten-free diet thinking they are okay (when they may not be at all). Very valuable to know.
4) Whether or not you are producing antibodies against any one of 24 different tissue complexes in your body and what the nature of that compromise is. This isn’t so you can lose sleep over what’s happening but instead to empower you with information about tissues in your body that may need specific support, along with which are being most affected by autoimmune processes. The Cyrex Array 5 “tissue immune reactivity panel” isn’t really about diagnosing autoimmune “disease”, per se—but rather helping you identify areas of compromise so that you better know what to prioritize. I consider this one of the most and unique valuable tests Cyrex offers.
5) If you can swing it, Cyrex labs array 11 panel, also known as the “chemical immunoreactivity screen” measures your levels of immunoreactivity to various common substances and environmental compounds, including some heavy metals. None of the substances tested in this array are good for anyone, however having an immune reactivity to any of them reveals the likeliest potential of these substances causing you particular problems. I have seen information from this particular array really make a difference for some people.
I have seen Cyrex labs testing truly change lives and often reveal answers nothing else has ever been able to provide. Were I you (and if you have the means) this is the direction I would go.
I would have to go to a "certified gluten practitioner" to do this testing. Appreciate your thoughts!
