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About Flor

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  1. Ms. Curious! Okay I totally GET IT NOW! Thank you SO much, that last round of explanation did it. I really really appreciate your taking the time to walk me through it. I had also read about the other gene (06) potentially providing some protection against auto-immunity (thank you wikipedia!) so that's a really interesting theory that it might delay onset of celiac. That sure fits with my history. In terms of our heritage, I know for sure we are a lot of Scotch-Irish and English and German going back a long long way. Maybe a bit of French in there. There are some other strands from my dad's side I don't know as well, but that's most of it. And my husband, for what it's worth, is very much the same. Which may explain why my son and I have same two alleles. I assume the 0201 comes from me and that the 06 is one that my husband and I both have in common. We don't have a big family history of asthma or eczema or allergies. But I do have some seasonal allergies (and they sometimes seem to be more gut symptoms than your classic sneezy respiratory stuff but I have had both). One of my nieces was diagnosed with asthma as a teen but it wasn't really asthma and inhalers didn't really work. We all wonder now if that was gluten-related (she has the 0201 plus 0202). My son just in this spring season has started saying he can't get a full breath and at various times seems to be doing a lot of sighing and big breaths. It's just in the last week and I'm at a loss about what to do. I sort of hate to take him to the doc and get an asthma diagnosis. So I am watching it for now because we are just now getting the gluten out of his diet. Do you think the allergy/asthma stuff is really a different face of celiac disease? I would be delighted to email with you off-list about any of these issues. I am a research nerd and am interested in going as deep into this as I can. I am doing a mid-life career change to get a masters in counseling to be a licensed therapist and part of what really interests me is how much what presents as "mood" disorders like anxiety and depression often has unrecognized underlying physiological causes. The mood issues I've had to deal with turned out to be very gluten and diet related. I am also in the last six months -- now that my gut is more healed -- dealing with a pretty advanced stage of adrenal exhaustion. Very low cortisol levels, total fatigue, messed-up circadian rhythm, muscle pain (different from the joint inflammation I had before going gluten free), orthostatic hypotension and etc. From my very cursory reading I gather that having untreated auto-immune disease for years can wear out the adrenals so there's a correlation between my celiac disease and my adrenal malfunction. Perhaps also a thyroid relationship too -- I don't know how much research has been done on what portion of the celiac population also has adrenal or thyroid problems. I bet it's high though. To other contributors on this thread, I want to say thank you for this conversation. And to say a couple of things about how I see the genetic testing. I think it's fascinating by the way that there seems to be widely varying opinions about the relevance of the gene testing. There are folks who seem to say it's irrelevant and others who see it as important. As I read more, i find myself leaning in the latter direction and it's entirely because of my son. In my case, I was already hugely symptomatic by the time I was diagnosed and went gluten-free. My son has two huge risk factors for developing celiac disease: that I have it as his mom and that he has one of the genes most correlated with getting it. Eating a lot of gluten is one of the factors that increases the change of his getting celiac disease. If I didn't know whether he had the gene or not and I operated as if he were a "regular kid" he would consume a lot of gluten between now and adulthood. And along the way life brings other insults that increase the chances of celiac getting triggered in him -- intestinal infections, life stress, environmental toxins, etc. One of the key issues for me is that having celiac disease at whatever level and continuing to eat gluten raises one's chance of getting colon cancer and lymphoma by many many times. And it seems to me we don't know the science well enough to know when someone with a predisposition for having celiac disease is actually manifesting low-level inflammation in response to gluten. How many years of that reaction before it shows up as clinical signs? So when I look at my son who is seven and has a lifetime ahead of him and I KNOW he has this genetic vulnerability to getting celiac, that means for me let's get him off gluten now because gluten for his body is a potential stressor, a toxin really. But if he had my other niece's genes, for example, she's got one gluten sensitive gene and the more rare gene that's the 04 non-gluten-sensitive gene, then I would feel like feeding my son gluten wouldn't necessarily be raising his lifetime risk for cancer. But knowing what I do know about his genes, I feel like feeding him gluten is to raise his risk of getting cancer and that seems worth knowing. Anyway, for what it's worth, this is how I've come to hold is. It's how my doctor sees it as well. But isn't it interesting how many different views there are on this, among doctors and the rest of us? That's why I'm so grateful for this discussion here, to hear the whole range of wisdom and perspectives. A quick note about my nieces on this topic -- they are both early twenties and both having a lot of new gut and fatigue symptoms. So they both got tested for the gene and for cortisol saliva levels to see about adrenal function. The really interesting thing (to me) is that one has celiac genes and normal cortisol and the other has very low cortisol and no celiac genes. What this means to me, and to them, is that the package of symptoms can look very similar but the road to healing very different. For the celiac gene niece, stopping gluten may be all it takes for her to feel better. For the non-celiac gene niece who has exhausted adrenals, for her the road is more rest and medications and though she is gluten free now, as of yesterday when she got the results, she now imagines a future where she might eat gluten and not worry about it. That's not something her sister will ever be able to do now. So to me, that's a snapshot of why the genetic test is significant.
  2. Oh my goodness MsCurious this is all fantastically helpful and you are so deep into it I can barely follow you! I will go read that wikipedia stuff. I really am interested in understanding it. In both your quoted excerpts here I don't understand what this means: "This isoform is partially encoded by the DQB1*02 genes in HLA-DQ2 positive individuals." I don't know what partially encoded means and I don't get how to read the DQB1*02 string. Is this saying 1. that people with the 0201 in their beta strand (which my son and I have) will usually also have the 0501 in the alpha strand (and this is info that Enterolab doesn't provide because they only give the beta strand info)? and that 2. therefore people with the 0201 isoform have "the single highest genetic risk" for getting celiac disease? Thank you thank you for hanging in there with me on this! I hadn't read anywhere the data about DQ2 homozygotes having lifelong risk of 20-40% for getting celiac so that's really interesting. My son and I are DQ2 homozygotes? That means we have one version (isoform?) of the DQ2 (ie, 0201) allele but not two copies of it? If I'm understanding that right then it seems like someone like my son who is related to me who DOES have celiac disease and he has the 0201 isoform that that would put him at two higher-risk groups among those who have some kind of genetic predisposition for celiac disease. Does that make sense?
  3. CassP and Zimmer, thank you for writing! CassP, I THINK I get what you're saying and the thing about only testing half of each allele sounds like what i read elsewhere, though I don't really understand why or what that's about. And if they give numbers like 0201 and 0202 (those are my niece's results), then what's the missing information? I just re-read my nieces results (0201 and 0202) and their analysis of her situation is actually worse than mine (0201 and 0603) because they say having both alleles be subtype 2, even though 0202 is not BY ITSELF associated with celiac disease, makes her predisposition to celiac disease higher and her symptoms more likely to be worse. And obviously having two copies of 0201 would be still worse because then both alleles are celiac associated. At any rate, the combination of these alleles seems significant as well, which then makes me wonder what it means to only report on half the allele. I'm still confused about that. Zimmer, I like your intuitive approach to all this. It sounds like you've found a way to hold this for your family that works for you. That's exactly what I'm looking for in my own way. Given that we understand that the science is still unfolding and that there's a lot we don't understand about long-term effects of low-grade inflammation on the body, my inclination is to err on the side of safe. There are so many insults out there already -- viral, environmental, emotional stressors -- that we now know can all increase chances of a wide range of chronic diseases. So it seems where we can that reducing the potential insults to the body starting at an early age is a good way to go. Just one small side example: our son got strep throat a couple of years ago and the scarlet fever rash that sometimes comes with it. I gather if a kid gets the scarlet fever rash, that's some indication that they are vulnerable to auto-immune disorders (like kids who have bad eczema for example). He further developed some signs of PANDAs after the strep (these are auto-immune linked neurological symptoms following strep that usually self-resolve and his did). Now none of this has directly to do with celiac disease, but it starts to paint a picture of a kid who might be prone to auto-immune responses over his lifetime. He also had severe reactions to a couple of vaccines, to the point that we didn't do followup boosters (I mean, even the CDC would have agreed with us on this and his doctor recommended we stop all vaccines until he's 11 and his immune system is more mature). These kinds of "extraneous" details make up a picture to me but it's one that mainstream medicine doesn't yet recognize I don't think. Anyway, just thinking out loud again... Thanks so much!
  4. Do you know which DQ2 genes are more strongly associated with celiac or where I might read more about that? I hadn't heard about that. The whole question of gauging when one is symptomatic is a bit mysterious to me. So here are two examples: 1. My son, seems like maybe his BMs get softer after lots of bread eating. Could be candida or unrelated or a potential symptom? He also seems to be developing some mild pre-asthma type symptoms. I know several people diagnosed celiac in their twenties who were diagnosed with exercise-induced asthma in their teens and they now regard their respiratory symptoms as gluten-related. So are my son's respiratory symptoms potential celiac symptoms? He also gets tired a bit more than you'd think for a healthy young seven year old but his immune system is otherwise strong and any doctor who looks at him would say "this is a healthy kid." 2. My niece, who also has the gene, is 22 and for the last year has been having headaches, nausea, fatigue and depression/anxiety. Would we consider these celiac symptoms? This seems so tricky to me because a ton of what in hindsight looks like early celiac symptoms are things that people go for years without seeing a doctor for. My situation wasn't that confusing because I was 40 and very sick and completely disabled by my guts by the time I was diagnosed. But my guess is I would never have gotten to that point if I hadn't been eating bread like a fiend for 40 years before that. You know? I guess part of me wonders if in ten or fifteen or twenty years we'll look back on the 1% of the 33% with the gene having celiac disease and realize that number is totally wrong based on a more subtle understanding of inflammation in the body and the long-term effects of that inflammation and stress.
  5. Thank you for your responses. It's so helpful to have smart people to talk to who have been down this road! Our tests were done through Enterolab and I gather for some reason they only report one line of alleles or something? I confess I still don't understand this genetic stuff! I've read the basic stuff online and I remember 9th grade biology but this isn't sticking for some reason. Anyway, our Enterolab results, my son's and mine, were identical: HLA-DQB1, Allele 1 0201 HLA-DQB1, Allele 2 0603 Serologic equivalent: HLA-DQ 2, 1 (subtype 2,6) I gather that "0201" is the celiac allele and the "0603" is the gluten sensitive one. I don't understand, if we each contribute two alleles, why Enterolab only reports two out of four. How do they choose to leave off half the information? Do Allele 1 and 2 represent contributions from mother and father or not necessarily? I sent them an email to ask this question -- I don't understand if the fact that our results are identical means that my husband and I have at least one of the same alleles or if it doesn't mean that at all. As to the second issue of blood testing before going gluten free...I guess the puzzle I'm having with that is this: it seems like the boundaries of what is considered "having celiac" versus not "having celiac" may be shifting down the line. New research indicates people can have celiac and be at higher risk for cancers long-term even if they show no villi damage. And if the false negatives in the blood test are possible and are higher for kids, then a negative blood test doesn't really seem to say much. If a positive blood test would lead us for sure to go gluten free, then wouldn't a negative one still likely lead us to go gluten free? I may be lost in this but my thinking is that if celiac disease is widely underdiagnosed, that it takes years on average to diagnosis, and that 99% of the people who ARE diagnosed have the gene, then wouldn't we be risking long-term inflammation and damage by continuing to feed our son gluten even if he isn't actively symptomatic? So many of the symptoms it seems to me in retrospect are vague and low-grade for years. I mean, is feeding gluten to a child who has the gene so different from say smoking -- ie, taking in a substance that over the long-term has the potential to cause real harm? I'm not arguing FOR this position; I'm more struggling with how to hold this given that we know how underdiagnosed celiac disease is and how much higher the risk for cancer for those who have it and keep eating gluten. Thank you for the conversation here!
  6. Hi all, I have celiac disease and have one celiac gene and one gluten sensitive gene (or allele I guess to use the better term). So I had my son tested (he's seven) and his results are identical to mine, right down to the specific string of numbers for both alleles. I have two questions: 1. Would you immediately get your son off gluten AS IF he had celiac disease because even if we don't see symptoms we can assume gluten over the long term will lead to inflammation? Does anyone address this issue in the literature or research? 2. Would you interpret these results to mean that my husband and I have one or both of these alleles in common? Since I only contribute one allele, then one of these two that my son has had to come from his dad even if it's the same as mine, right? Partly, I'm trying to figure if my husband needs to be tested too in the potential situation that I contributed the gluten sensitive gene and HE contributed the celiac gene to our son. I don't really understand how this stuff works and I read someone on here mention that Enterolab doesn't give the whole result, that there would be FOUR alleles to report. So is it possible the results they've given us are only the alleles I'VE contributed and we actually each contribute two and not one? Thanks for any insight you all might have!
  7. I'm no doctor, just searching for ways to get better like you are. I'm not sure why you are contacting me specifically?

  8. I am looking for info on recovery from leaky gut/gluten intolerance... etc. I have read about taking probiotics but I get sick from them and even yogurt makes me sick. I seem to be getting more sensitive to foods and I know I need foods that are healing. Could you help me with that? etta694 Thank you for any help you can offer.

  9. The lab recommended by one of the docs who "wrote the book" on adrenal fatigue and that also accepts direct orders by patients is ZRT lab: http://www.adrenalfatiguerecovery.com/Hormone-Saliva-Test.html The MD is Dr. Wilson and his book is: http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152/ref=sr_1_1?ie=UTF8&qid=1296166228&sr=8-1 It's a quick read and is useful for having a many-page questionnaire in it that almost makes doing the cortisol test unnecessary. My results from the survey correlate so closely with the lab results. I've also found Dr. Lam's information to be helpful but you have to work around the ads: http://www.drlam.com/articles/adrenal_fatigue.asp The Mothering Mag thread is here: http://www.mothering.com/community/forum/thread/1153174/the-adrenal-fatigue-thread The compounding pharmacy my doc works with is: http://womenshealth.com/patient/wha/wha/four-steps-to-hormone-therapy-that-works They make customized topical creams for things like hydrocortisone and bioidentical progesterone, but also for Vit D and B vitamins, to bypass the gut. I assume there's discussion elsewhere on this forum about the GAPS diet, but here's the main website: http://www.gapsdiet.com/ And there's a yahoo list for followers of the diet (a ton of traffic so I stopped following but also a ton of information) here: http://health.groups.yahoo.com/group/GAPShelp/
  10. Whoooops so sorry, my brain not working. Labrix did the saliva test. There are three or four main labs now that do this saliva cortisol testing (it's four samples throughout one day), some of which require a doctor's order and some of which you can do directly with them. It costs about $140. I think even Medicare pays for it. You can also ask them to add estrogen/progesterone/DHEA (all of which the adrenals are responsible for, at least in part) to the test, though if you're still cycling you need to do that at the right time of the month (I think days 19-22). I dug up all the labs I found for my cousin and can go find that email to her and will post back here. I think you can even order them through Amazon. Anyway, duh, Enterolab did my celiac gene test (cheek swab) and I crossed them in my brain. F
  11. Sorry, correction, that's Tyrosine I take, not taurine, though I think taurine shows up in some other supplements I take. But Tyrosine is specifically recommended for adrenal fatigue.
  12. I had the saliva test done through Enterolab and my cortisol levels barely get up off the floor in the morning and then crash the rest of the day. And my symptoms indicate I'm estrogen dominant. So I am taking hydrocortisone in very small doses and bioidentical progesterone half the month, both topically so as to not go through the gut. Were the hormones you were given bioidentical or was it pharma pretend estrogen? I also got an ovarian cyst when I took estrogen make by pharma companies -- it's not the same estrogen as in your body, not the same molecule, but you probably already know that. My doc is an internist but an osteopathic one, a medical license but not an MD. She works only with women and is also a gyno. I haven't done the food allergy testing -- who did that for you? What is the test called? I know my niece had it done but I can't remember how. I gather that it turns up a lot of false positives though. She's gone on to eat many of the foods that showed up in her test. So I don't totally understand how much or how long one uses them for guidance. I had hair analysis done too -- I want to do some research on how well or not well-regarded hair analysis is as a sampling method. In my case, the interesting thing is that they didn't know my other labwork or any diagnosis and the one thing they came up with most clearly was that my low sodium and potassium indicated adrenal exhaustion, so it seemed confirming in that way. I will be back with some links I've found useful later. I have serious orthostatic hypotension -- my blood pressure drops a lot from sitting to standing -- which surprised me and is another indicator of adrenal fatigue. Lots of people I gather are treated for adrenal fatigue without hydrocortisone, using just supplements and adrenal cortex (bovine sources) -- I'm still trying to understand the science of how eating ground up cow adrenal glands helps a person's adrenal glands. Other than the GAPS diet and the supplements I was already taking to heal my gut, the changes I've made are to go to sleep earlier and stay in bed until at least 9am. I am getting more sleep. I lie down later afternoon every day. I take Taurine and Ashwaganda in the morning (there are other herbs recommended as well but I haven't gone there yet). I had lost my appetite, which is common in adrenal fatigue, so while I was eating mostly meat and vegetables, I still wasn't getting enough protein. Too many nuts which don't have enough protein if you aren't taking in a lot of calories. So I am eating meat with every meal. This isn't permanent but my body wasn't getting and/or assimilating enough protein. I"m taking digestive enzymes with every meal now. And I am taking much larger doses of Vit C and Magnesium than I was before. And I've started doing Qigong and going to acupuncture, both of which I think are helping energetically, though the acupuncture leaves me feeling WIPED for a day afterwards. There's a pretty informative thread on the Mothering Magazine boards called THE adrenal fatigue thread -- it got so long they had to split it. But it's not as active as the celiac forum and they aren't addressing the specific relationship between gut health and this other stuff. Though interesting to read all these other women with crashing cortisol. Thanks!
  13. Hi all, I would love to hear from others who have adrenal fatigue/exhaustion. Who else has done saliva cortisol testing and/or from symptoms lists thinks this is part of their issue? And has anyone done research on the possible links between Celiac and adrenal fatigue and/or links in terms of recovery? I am going to do some research and will post back here. There's some great books and online articles now about adrenal fatigue and I have a sneaking suspicion that the burden on the whole body of eating gluten while undiagnosed with celiac for years may contribute to adrenal exhaustion so that there may be folks out there for whom going gluten-free doesn't do it because the adrenals are worn out. I have been gluten-free for four years and now eat paleo/GAPS diet -- ie, no grains at all. I had to get off grains entirely (and corn and potatoes) for the gut issues to resolve. My guts are mostly healed and the joint pain much better, but it was followed by increasing exhaustion and muscle pain and a host of other symptoms that at first I misdiagnosed as CFS/FM. But when I did day-long saliva cortisol test, turns out I'm in stage three adrenal exhaustion but don't otherwise have any inflammatory process going on (based on extensive blood tests). The adrenal exhaustion requires other treatments and lifestyle changes beyond what the gut healing required. I searched for "adrenal fatigue" on this forum and found a number of mentions in different threads but wondered if it might be helpful to have one place where we share information about this specific inter-connection? Totally fine if it's not helpful. But I'll put it out there and come back with some links and see if there's a need for this thread. Thanks! F
  14. Hi everyone. Thank goodness some of you seem to really understand this gene stuff. I am barely grasping. My Enterolab results came in today and I have HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0603 Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6) I understand this as having the DQ2 celiac gene and the DQ6 gluten sensitivity gene. Yes? Is there anywhere that these various gene combinations are talked about in terms of symptoms, outcomes or just explained with respect to the disease process? I've picked up little snippets, like DQ6 is evidently also protective AGAINST some auto-immune diseases. So is it "helpful" in any way to have the DQ6 if you're going to have the DQ2? Anyway, I'm interested in this stuff, I've read the wikipedia entries, but I'd love to know if there are sources where this gets explained more thoroughly with respect to celiac disease. Also, I'm going to get my six year-old son tested because presumably he has either the DQ2 or DQ6 from me and something from his dad. This is what you all would do right? And then it would be helpful to have some kind of guidance about whether I need to get him off gluten right away or whether we don't need to panic about that. I'm just trying to figure out how to hold all this. I'd love to hear reactions from anyone about how you would respond if say your child had two gluten sensitivity genes (which seems most likely for people of European descent) but no celiac genes? And if your child did have the DQ2, would you get him off gluten ASAP and proceed AS IF he had active celiac disease? It's very clear based on the trajectory of my symptoms and my reaction to going gluten free that I have celiac disease even though I haven't done the biopsy. I had the full line-up of risk factors that are associated with turning those genes "on" leading up to becoming chronically symptomatic. I don't understand the B and A allele thing. Enterolab evidently only tests the B line? Is this leaving out key information that would be helpful? Thanks!
  15. Hi all, I haven't been here for a long time. But the canker sores post came up in my google search and now I'm back. From what I've read, canker sores are also a symptom seen in adrenal fatigue. Which raises the question for me here about who knows anything about the relationship between adrenal fatigue, celiac, and CFS/FM? I'm being tested for adrenal fatigue (saliva test, cortisol and other hormone levels throughout a day) among other things. My diagnosis for celiac is indeterminate b/c I was off gluten when I first went to the docs and was unwilling to go back to eating gluten for their tests. I am getting tested for the gene though. It seems to me ALL these ailments, even celiac, are very stress-related, which is to say mediated through the HPA axis (hypothalamus, pituitary, adrenal axis) which is why I think many of the symptoms are similar: sore joints and muscles, fatigue, leaky gut, malabsorption, depression/anxiety, skin inflammation, multiple food sensitivities, etc. While I've been gluten free for five years, the most dramatic round of gut healing I've experienced (near total elimination of all gut symptoms) happened when I stopped eating ALL grains, including rice, corn, and potatoes. I eat a modified paleo or GAPS diet now. I think for people with celiac (or many people with celiac) the gluten reaction is only part of the story. So while my guts have largely healed, I now have a lot of symptoms of adrenal fatigue. I think it's part of the same process. My guess is in time we will discover that so many of us who have or think we have celiac disease, that stopping eating gluten is only a small part of what needs to happen. And that another part has to do with supporting the adrenal glands and changing our lives so that we do not absorb and process stress in the old way. I haven't kept up on the literature, but I'd be curious to know what portion of people diagnosed with celiac disease make a full recovery just by eliminating gluten from their diet. Anyone know?
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