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Sekhmet

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About Sekhmet

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  1. So, my TTG-IgA came back negative (< 0.5). EMA IgA isn't back yet, but I'm guessing it will corroborate the above. I'm being referred for an immunology consult, because of my low IgA level. 😕
  2. So, I have spent the last hour researching it. The most useful information I am finding is in medical journal articles, because most websites just lump "low IgA" into the "IgA deficient" category and make blanket statements about it. However, looking more deeply, there is common agreement that there is "severe" IgA deficiency, which is defined as <7 mg/dL, and there is "partial" IgA deficiency (defined as below the normal range I cited above). So I fall into that "partial deficiency" camp. The latest article I was reading is here: http://clinchem.aaccjnls.org/content/54/7/1203 This study agrees with a couple others I have read that assert that a patient with "partial" IgA deficiency will still get positive results on the IgA-EMA test and I believe also the TTG-IgA test, apparently on a frequency that matches that of non-IgA deficient patients. However, there are just a handful of studies that have been done on this, and I guess it hasn't been unanimously accepted that this is the case... It remains a bit of an unknown. Still, I feel like if all of my blood tests were to come back negative, it probably would not really make sense to push for a biopsy because I do not have typical celiac symptoms to begin with?? As much fun as that sounds like...
  3. So... I went back for another blood draw yesterday. The doctor ordered: TGG IgA Ab IgA Endomysial antibody, IgA titer (I think this is the one you warned can be expensive...) ANA (for the 3rd time, I assume because I had 1 positive result & 1 negative result) MTHFR mutation Homocysteine So this morning, in the clinic's web portal, 1 of the test results was already available. It is my IgA, and it is flagged as "low" at a value of 42 mg/dL; the normal reference range is given as 70-400 mg/dL.
  4. I've been lacto-ovo vegetarian for... going on 30 years. I was vegan for about 1 year, but that was ~20 years ago. And I do know that veganism can result in a B12 deficiency, but not lacto-ovo vegetarianism. I eat plenty of eggs & dairy, daily (probably too much dairy, in fact). I don't have any real GI issues to speak of, so that is why I doubt Crohn's. I really appreciate your advice and well wishes! I will update once I get further testing done.
  5. Okay, thanks. Re: MTHFR - I don't really know yet... I only started reading about it yesterday and it is pretty overwhelming. But it does seem to be common advice that if you have a close relative with it you should be tested, and I guess having 2 copies of the "C" variant, as my sister has, is the "worst" variety of it. It came to light for her when she was going through infertility and miscarriages. They discovered that her homocysteine was high, which led to the MTHFR testing. So that is one thing I know I would then want to proceed to do, if I do have it - get my homocysteine tested. My dad died of early-onset Alzheimer's, and apparently there is a link between high homocysteine as well as the MTHFR mutation and Alzheimer's. It also seems like it would be worth knowing if I have it since it could be the cause of my lower levels of B12. And I guess maybe I would need to start taking methyl-folate? I mean, to answer your question, I am not entirely sure what I will do if I do have it. Probably read a lot more about it... and take supplements like methyl-folate if I really think I need to. Check my homocysteine & control that if I need to, hopefully to lower my risk of Alzeheimer's. It seems like a frustrating area because there appear to be limited official medical websites that really even talk much about it (so far). I have found one article on the NIH that focuses on the link with high homocysteine. I already eat a very healthy diet. Whole grains, lots of fruit & veg, mostly organic. I am a vegetarian except for very rare seafood. I avoid processed food and, above all, foods with added sugar... To me, sugar is by far the worst culprit in the SAD. I think RA has been ruled out by my 2 negative Rheumatoid Factor tests (one done several years ago, one just this year at my physical). Also, the way this started in my elbows, and was really only there for years, is just... weird... and definitely doesn't really fit with arthritis. And there is no swelling to speak of, just mild pain - sometimes aching, sometimes burning, sometimes sharp... It may or may not fit with any systemic diagnosis versus a mechanical one, but nowadays I do also have pain in my hands, feet, and knees. So then I think, well maybe it is/was something systemic, but it was worse in my elbows for some mechanical reason but now has progressed elsewhere. I thought Crohn's was just digestive? (Of course, many people think that of celiac.) So I haven't really investigated that one much. My ANA was retested and is back down to "negative," so I think that pretty much rules out lupus. I believe fibromyalgia is still on the table. Anyhow.... Your point is nonetheless taken. I do want to rule out celiac and go from there. At this point I'd sure love to find out it is something I could control through my diet!
  6. Thank you so much, cyclinglady. Yes, very helpful! I want to tell her the exact tests I want. I am thinking I should request: tTG-IgA Total serum IgA Do you agree? I am on a super high-deductible health plan, so I end up paying for all of these, so I don't want to go overboard while still being as sure as I can be. Not related to celiac (as far as I know) but I was also reminded that my sister has the MTHFR gene mutation (homozygous C variant), so I need to ask her to be tested for that as well... She is going to think I am nuts, and that is fine. ;)
  7. Got the result today, and it is indeed the IgG only, and it is "negative" with a result of: <10.0 Units I have sent a message to my doctor requesting that she at least also order the TTG IGA test. However, I'm assuming that this result does at least significantly lower the likelihood that I have celiac? This is all just a shot in the dark anyhow... but after 8 years of unsatisfactorily diagnosed mystery joint pain, I don't want to only half-explore an option and then abandon it without a reasonably definitive result.
  8. Thank you, cyclinglady! Yes, she is an MD. This was my first visit to her, and I was really impressed during my visit - she seemed to really be on top of things (at least, relative to a string of mediocre doctors I have had previously), but at that time celiac was not a topic. So you may be right that she is not celiac savvy. 😕 I am holding out a small hope that maybe what was on the paperwork is not what their lab will actually do?? The nurse had said "panel," after all. I'm hoping it'll end up magically including some of those others. Or... the doctor meant to order the full panel but like clicked the wrong one... Anyhow I will wait and see what this result looks like and go from there.
  9. Thank you, both! GFinDC, that's helpful to know about Vit D. At my previous physical (Jan 2018) was when I was found to have a D deficiency at 19 ng/ML, and my doctor prescribed a supplement. After some back & forth (she first prescribed D2, took some work to get her to instead prescribe D3), I ended up on a 50,000/week dose. In August 2018 I did that mail-in test I mentioned to check my B12, and that test happened to also include D; at that time, my D was too high, at 83 ng/mL, so I messaged my doctor who instructed me to stop taking it. Now, since August, I'm all the way back down to 36. The nurse who discussed my test results with me this week said I should take 800 iu/day. I have like 3 unused cartons of those Viactiv D+calcium chews so I plan to just use those for now (although I'm not a fan of the sugar/other crap in them). Long story short... I appreciate the tip about taking it daily versus weekly. In what way is it "better" - just in terms of elevating your D level? Or does it result in a more consistent level that's healthier for you? Re: celiac testing, I posted separately about the test my doctor ordered when I requested to be tested for celiac (just humoring me??), here...
  10. Hi everyone, I have been suffering from chronic pain in both of my elbows (progressively down my forearms into my hands) for over 8 years. It began when my daughter was 10 months old; she was a very large baby, and therefore awkward to handle, and in the beginning I was diagnosed & treated unsuccessfully for tennis elbow. The pain is relatively mild - it has never been debilitating - but it is chronic, and over the years I have been to countless doctors, an orthopedist, a physical therapist, and a chiropractor, and have had various diagnoses but am yet to have a solid one. Various treatments have been tried. Many years ago, a nerve conduction study was done that showed slowing through both elbows, indicating radial tunnel syndrome; however, I have at least as many, if not more, symptoms of compression of the ulnar nerve instead. Nothing was done then, because there was nothing to do but surgery and my symptoms weren’t bad enough to make that worthwhile. (Also... radial and/or ulnar nerve compression could be caused by inflammation in the surrounding tissues that is caused by something else entirely - again making surgery unattractive.) That is probably more than enough on that for the moment since this isn’t an elbow forum. Long story short, I have had chronic, erratic, and mystifying elbow/arm/hand pain. In the last 1-2 years, the pain in my hands, in particular, has worsened and I have developed knee and foot pain on both sides. The soles of my feet ache for no apparent reason, whether I am walking, sitting, lying down, or driving. I do not work on my feet, nor do I wear heels much (never any more, due to this pain). (Note that I am relatively fit, not overweight, and have no other symptoms and no blood tests that would indicate diabetes.). I also have a lot of neck, shoulder, and back pain that I tend to blow off as work-related, as I work on a computer. Yet, it doesn’t really seem to get better when I am off work. I am 41 now, but this all started when I was 33. Now that I’m in my 40s it’s easier to blow things off as age-related… but I am not sure I should be. So that sums up most of my symptoms… essentially just mild but chronic joint & muscle pain, particularly in my elbows and now feet but also other locations. Also worth mentioning, last year I was found to have a Vit D deficiency (19 ng/mL) - I do realize this is very common. Later in the year I did one of those mail-in blood tests to check my B12 and that was also “borderline low” at 298 pg/nL, which is not so common. I had a routine physical last week, and my doctor ordered all of the usual blood tests I’ve had on past physicals. Many of these are ordered just because my health insurance company puts money in my HSA as a reward for doing so. However, I’m seeing a new doctor and have lately been motivated again to try to figure out what is going on with my joints, so after we discussed it she also ordered an ANA test as well as a Rheumatoid Factor test (the latter I had years ago & it was negative; it was negative this time, too). For the first time on a physical, I had numerous abnormal blood test results… WBC (white blood cell) count: LOW (3.5 K/cumm). Normal: 3.8 - 9.9 K/cumm. MCHC (mean corpuscular hemoglobin concentration): LOW (32.0 g/dL). Normal: 32.3 - 35.7 g/dL Alk Phos (alkaline phosphatase): LOW (34 Units/L). Normal: 40 - 130 Units/L. ALT (alanine aminotransferase): HIGH (54 Units/L). Normal: 7 - 45 Units/L AST (aspartate aminotransferase): HIGH (100 Units/L). Normal: 10 - 45 Units/L. In addition, ANA (anti-nuclear antibodies): POSITIVE. (1:40 dilution) The combination of all of the results, and my obsessive googling while waiting to hear from my doctor (these were available to me online in my doctor’s web portal) are what led me to wonder about celiac disease. For every one of these results, celiac comes up as a potential cause (whether direct or indirect - for example, by causing an iron deficiency which then causes low MCHC). I realize that a positive ANA at that low level is not uncommon and could be nothing (and that positive ANA doesn’t indicate celiac); yet, I read that a false-positive ANA is sometimes seen in celiac patients. TL;DR: Have any of you arrived at a celiac diagnosis when your primary/only symptoms were chronic joint/muscle pain? And, have others started out with a slew of weird routine blood test results, that led eventually to a celiac diagnosis? I know some of these are only slightly out of range and might just be due to my body fighting off a virus or the like.
  11. Hi everyone, I am new here. At my request, my doctor ordered a blood test to check for celiac disease. A nurse told me my doctor said they would do a "celiac panel," so I expected that it would cover a few different measures. However, I went in this morning for the blood draw and noticed that the paperwork indicated only this test: Gliadin (Deamidated) Antibodies, IgG, Serum From my reading, this is not the preferred test, although it may be done in conjunction with other tests. If this single test comes back negative, can I be confident that I do NOT have celiac? Or would I need to push my doctor for a more comprehensive panel? Thank you!
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