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gatewaytobeing

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About gatewaytobeing

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  1. Oops, forgot to green light the reply notification bar. Guess you have to post again to do that? Got it now.
  2. I'm 48, have had a lifetime of health problems, a long list of diagnoses (including degenerative osteoarthritis, early osteoporosis including a broken hip at age 26, fibromyalgia (if that's real), hashimoto's thyroiditis, thyroid nodules - 1 of them over 1" large and recently biopsied and genetic tested with a result of 40% chance of cancer - , years of severe period problems with flooding, anemia, huge ovarian cysts, finally culminating in a total hysterectomy 3 years ago which also diagnosed stage 4 endometriosis, and the list goes on. I have SUSPECTED gluten off and on, among other things, but gluten most of all. I don't have a lot of the classic intestinal issues, although I do get random bouts of nausea and have daily constipation from my meds for chronic pain. ETC! Anyway, I had the blood test done twice over the years, celiac panel, and both times negative. Then before my hysterectomy after doing more research and still suspecting gluten, I went gluten free for 8 months (first month was strict and total, but subsequent months involved tiny cheats based on me not being 100% sure the diet was necessary). I felt AMAZING the first 2 weeks and thought I had finally found the answer to everything. But as time went on, not so great anymore and then went back to a normal diet. So, having suffered some more, I decided to revisit the gluten possibility this month. I went online to EnteroLab and ordered the stool test. I just got the results yesterday and had a Fecal Anti-gliadin IgA of 159 Units (normal is less than 10). My reaction was mixed, but mostly happy and feeling validated. And I thought I'd probably go ahead and enjoy gluten a few more days up to a week before jumping back in 100%, but this morning woke up and realized I just didn't want one more bite - I wanted to be done hurting my body. So I had zero gluten today - day 1. Spent the day researching, writing lists, and then re-finding this group that I have not been a part of since 2009. I made a post about my lab results, and got only one response - basically saying that the EnteroLab test is crap. Now I feel like my world is upside down and I'm so frustrated I'm about to cry. Very depressed. I could really use some support, advice, encouragement...
  3. Did you see this post or just the last copy/paste post? I'm asking legitimate questions, not ruling anything out. I'm also looking for SUPPORT, not attitude. Thanks Karen. Interesting. I'm a little confused by the article. It sounds like it is saying that stool testing brought on a high rate of false negatives in celiac children. I'm not seeing where it indicates false positives for anti-gliadin IgA in stool. I'm wondering if the difference is in the mechanism of gluten sensitivity or intolerance versus celiac. EnteroLab did not say I have celiac, and did not claim that the test was diagnostic for celiac. Just whether or not you are having an immune reaction in the gut to gluten. I tried doing some more web searches about gluten stool testing, and I was unable to find any additional studies or info that discounted it - just several articles that seemed to endorse its accuracy. Apparently, blood tests have about an 80% false negative rate? I am not sure what to believe, but I am open to learn. Please help me interpret the article you referenced, in regard to discrediting a positive IgA result. I know that intestinal biopsy is the "gold standard," but I have heard even that can be falsely negative, even if the person with celiac is eating gluten. Seems like a tricky condition to accurately diagnose. I thought about ordering EnteroLab's genetic test at the same time as I did the stool, but I called them to ask and they said it may not be necessary. That did make me feel as though they aren't just trying to get my money. I'm feeling a little thrown off now, as I was determined that I had every reason to be strictly gluten free for life. This diet will/would be very hard for me to endure long term if I don't/didn't believe that it was necessary. I have SO many ridiculous health problems, and feel like crap every day.
  4. Please comment on the following: From EnteroLab's website: EnteroLab is registered with the U.S. Government's Department of Health and Human Services department as part of the Clinical Laboratory Improvement Amendments (CLIA). This agency oversees clinical laboratory standards and quality. We have also opted for (at our own expense) third-party accreditation from COLA, a non-profit national laboratory accreditation organization. EnteroLab passed this accreditation inspection in 2001 and re-accreditation in 2003, 2005, 2008, 2010, 2012 and 2014 with the highest standards. COLA accreditation is given only to laboratories that apply rigid standards of quality in day-to-day operations and pass a rigorous on-site laboratory survey. COLA is approved by the federal government and sponsored by the American Medical Association, the American College of Physicians-American Society of Internal Medicine, the American Academy of Family Physicians, and the American Osteopathic Association.
  5. Thanks Karen. Interesting. I'm a little confused by the article. It sounds like it is saying that stool testing brought on a high rate of false negatives in celiac children. I'm not seeing where it indicates false positives for anti-gliadin IgA in stool. I'm wondering if the difference is in the mechanism of gluten sensitivity or intolerance versus celiac. EnteroLab did not say I have celiac, and did not claim that the test was diagnostic for celiac. Just whether or not you are having an immune reaction in the gut to gluten. I tried doing some more web searches about gluten stool testing, and I was unable to find any additional studies or info that discounted it - just several articles that seemed to endorse its accuracy. Apparently, blood tests have about an 80% false negative rate? I am not sure what to believe, but I am open to learn. Please help me interpret the article you referenced, in regard to discrediting a positive IgA result. I know that intestinal biopsy is the "gold standard," but I have heard even that can be falsely negative, even if the person with celiac is eating gluten. Seems like a tricky condition to accurately diagnose. I thought about ordering EnteroLab's genetic test at the same time as I did the stool, but I called them to ask and they said it may not be necessary. That did make me feel as though they aren't just trying to get my money. I'm feeling a little thrown off now, as I was determined that I had every reason to be strictly gluten free for life. This diet will/would be very hard for me to endure long term if I don't/didn't believe that it was necessary. I have SO many ridiculous health problems, and feel like crap every day.
  6. Hi After posting here May of 2009 the results of my seemingly negative celiac panel test, I've continued to suffer and go downhill with my health. Suspecting gluten despite the blood test results, I did some research on additional testing and found EnteroLab. I ordered the stool test and just got the results yesterday. Normal is less than 10 units, my count was 159 units. This has to do with IgA. I don't have the test in front of me right now to be more specific, however it said the recommendation was to follow a strict and permanent gluten-free diet. So, I'm back! I'm having some trouble navigating this site now and can't seem to locate the main forum. I didn't think I'd ever find how to post this message! Anyway, now that I'm here I just wanted to say HI and ask if anyone has any comments about stool testing results and/or EnteroLab. I'm planning on getting at least one of my sons tested next. Also anything else you guys think I should know I'm grateful to hear it. Thanks, Kath
  7. Hi, thanks for replying. I had to go back and find my original post on this site where someone told me what tests to ask for. The celiac panel? They were: 1.Anti-gliadin antibodies (AGA) both IgA and IgG 2.Anti-endomysial antibodies (EMA) - IgA 3.Anti-tissue transglutaminase antibodies (tTG) - IgA 4.Total IgA level. These are the tests that were on the script for the lab. My faxed print-out copy was admittedly hard to read. Now that I have this list (above) in front of me, I can see how the two compare. 1. AGA-IgA = 3 and AGA-IgG = 1 2. EMA-IgA = negative 3. ?? 4. ?? Instead of having a tTG-IgA and a Total IgA, I have an "IGG" and an "IGA" and an "IGM" as well as some sort of Icteric and Lipemia Index. Whether or not these correspond with what was ordered for lines 3-4, I don't know. Maybe only certain labs do these? However, the first 2 lines seem correct? And are negative for celiac I assume? Thanks again, K
  8. Hi - I was surprised to get only one reply to this. Can someone who understands this bloodwork please tell me if it rules out celiac? Or let me know if the low IGG is something to be concerned about? Thanks ...
  9. Hi everyone, A few weeks ago I asked my GYN to order the celiac bloodwork that someone here recommended. I just received a fax of the results, which are hard to read but here's what I have: IGG - 99.00 (normal 649-1634) (does this mean I have an immune system disorder?) IGA - 187.0 (normal 73-358) IGM - 165.0 (normal 53-251) Hemolysis Index - No Hemolysis Icteric Index - 1 (0-15) Lipemia Index - 4 (0-50) Endomy IGA - Negative Endomy A Titer - ?? (can't read some of this, it's T?P, then says SCREEN TEST NEGATIVE, TITER NOT PERFORMED Gliadin IGA - 3 (no reference range given) Gliadin IGG - 1 (no reference range given) Any thoughts on this? My GYN says she's not trained to interpret for celiac. I am actually most concerned about the very low IGG. Thanks all!
  10. With your low body temp have you looked into thyroid problems?
  11. With your low body temp have you looked into thyroid problems?
  12. Hi, I am awaiting results of blood tests for celiac, and wondering how common is it for someone to have celiac without any of the typical gastro symptoms. I have thyroid issues, anemia issues, depression, memory and brain fog issues, fatigue, joint and muscle pain (etc. long list). However, do NOT have diarrhea, gas, bloating, stomach pain, digestive problems. Anyone here have (or know someone who has) celiac without these types of gastro symptoms? Kath~*
  13. Thanks Tiffany! I didn't know that low iron can cause itchy legs. I have iron-deficiency anemia, so that explains it.
  14. Just curious, are intensely itchy legs (not related to any dry skin or rashes, but seemingly arising from nerves inside the legs) a symptoms of celiac?