Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

ENF

Advanced Members
  • Posts

    303
  • Joined

  • Last visited

2 Followers

  • captaincrab55
  • breavenewworld

Contact Methods

  • Website URL
    http://
  • ICQ
    0

Profile Information

  • Gender
    Male
  • Location
    NYC

ENF's Achievements

  1. I do also love Larry Mac's humor :)

    But I'm wondering about something else........since I'm very strictly gluten-free, I NEVER have diarrhea any more. Ever. (unless I'm careless, then it's...........um......soft poo :ph34r: - sorry - but never a blowout or a problem). So - ENF - I'm just wondering if you're well and truly gluten-free? I know there are other causes of diarrhea and loose stools (dairy, legumes, whatever the culprit for each individual)...but just concerned that you're still having the D on a g f diet. Just curious!

    <I FINALLY FINALLY got a summons for jury duty, was so excited, and had already moved from that city. Got another one this year, but did not get called. I SO want to go. :lol: >

    I am gluten free, soy free (almost 100%), dairy free, corn free (mostly), and lentil free. The stomach issues are not that bad as long as I am not in a particularly stressful environment - including, but not limited to, being denied bathroom access. I also have mitral valve prolapse syndrome, with dysautonomia (also probably related to Celiac), as well as other problems both physical and neurological. I am not home-bound and have not pretended to be, either to my doctor(s) or the courts. Many people with Celiac still have symptoms, despite going gluten-free, and the experts still do not have many answers to this. If the condition was as simple as some make it out to be further research would not even be needed - but we have notyet scratched the surface of developing a comprhensive understanding the role Gluten plays in Celiac patients, or in those in the majority who do not have Celiac.

    There are consequences for our diets, and I am glad to have survived 50+ years of undiagnosed Celiac. I intend to keep on surviving, and if I do not feel comfortable with something, as in an environment that is toxic to me, I will no longer disregard my instincts and try to cope with physical and/or neurological reactions to foods, jobs, people, places or situations which are unhealthy for me - except when it is absolutely necessary to do so.

  2. Thank you, larry mac, apology accepted.

    Our courts, in NYC, get the worst of the worst including everything from the Somalai "Pirate" to the terrorists who bombed the WTC in 1993 (I was close to the scene when that happened, as well as the events of 9/11). I have served on juries and grand juries for things like armed robbery, sexual abuse of a minor, rape, manufacture sale and possession of controlled substances, assault on a police officer which resulted in partial blindness for him, car theft, breaking and entering, and other crimes. It is "interesting", but not for the faint hearted, to say the least - I am not put off by most of it, but if I am late or absent due to celiac problems, I do not want to be the one thrown in jail, and put on trial, myself. As I explained in my original post, I still have issues that make it very difficult to sit for long periods.

    Jury duty is a very serious business, and I sometimes think that it should be in the hands of trained professional jurors, as it is in some other countries.

  3. I went to the court this morning and have been permanently excused from jury duty in New York State. I am sorry that my reasons are not acceptable to some of you, but I have served under great duress several times before diagnosis, including State Grand Jury. Many other people, with no medical problems at all, never get served with a jury duty summons - I have done my share of jury duty and no longer feel that it is necessary to go through the stress and put myself at risk for penalties and possibly jail time if I am chosen to serve and am late due to my stomach issues or other celiac-related health problems that I have.

    Thanks very much to the people who responded with support. Good luck, Larry Mac, with your state's attempt to secede from the Union. I support this move 100% and hope it is successful. B)

  4. I have received a notice to report for jury duty at the end of the month. I am on a strict gluten-free diet, and my condition has improved, but still have problems as many of us do. I obtained a signed statement from my gastroenterologist today saying that he does not recommend that I serve because of Celiac disease and complications including the need to have access to a bathroom at all times due to frequent diarrhea, the gluten-free diet I must maintain while serving, and peripheral neuropathy which makes it very difficult to sit for long periods. I have served on juries several times, prior to diagnosis which was before I got extremely sick. The last time I served, about 5 1/2 years ago, I took a large amount of immodium every day.

    I am considering just asking for a postponement for now because I have other medical business, including eye socket surgery, very soon - and I do not want to risk jeopardizing this by being compelled to serve if my request is turned down.

    Does anybody know if the courts would turn down a doctor's recommendation?

  5. Hi Brenda,

    A positive blood tests for Celiac is considered very accurate, but if you plan on getting an endoscopy you must continue to consume gluten.

    As far as you parents' and the need for gluten free foods, they should understand that to not do it is putting your health in further jeopardy. As you may already know Celiac Disease is an autoimmune disease, as is Lupus. Since Celiac is inherited, your parents, and any siblings, should also be tested.

    It takes some time to learn how to live gluten free, depending on what you're used to eating, but it is not impossible. There are a number of good books about Celiac, including cookbooks. Going Gluten Free will most likely bring about a recovery from Celiac and, in the best case scenario, you may find that your immune system responses improve in other ways such as as a reduction in Lupus symptoms, flare-ups, etc., as well. Good luck.

  6. Hi, I was diagnosed with celiac disease last year after my miscarriage. I've been feeling sick a lot and it's just gotten progressively worse. I had to go to the ER a few weeks ago and was diagnosed with iron deficiency anemia after I had a CBC test

    (RBC 3.43 HGB 8.7 HCT 27.9)

    Anyway I'm not feeling any better but I was wondering if anyone else has iron deficiency anemia or if celiac disease can cause anemias that are more dangerous or serious than just iron deficiency. Thanks.

    It sure can! I had ferritin levels of zero, and dangerously low iron. Went to two hematologists, one on 57th Street in Manhattan, and they didn't even consider Celiac. I also had all kinds of tests done, at various NYC hospitals, and the doctors never suggested, or tested for, Celiac.

    BTW, are you on a gluten free diet?

  7. If you don't do this already, I would recommend taking fish oil supplements, or eating fish several times a week. This seems to keep my mitral valve prolapse and other valve problems from bothering me too much.

    I saw two hematologists, before my Celiac diagnosis, and neither one even mentioned Celiac. They just gave me Rx's for iron because of severe anemia. My ferritin level was zero.

  8. We ordered two chicken dishes from the UNO gluten free menu, and both were delivered with large bread sticks on the plates.

    The manager we spoke to, before ordering, assured us that there would be no problem with ordering gluten free. When they brought the orders with bread sticks on the plates, we put on our coats. The person that brought our food, not the waitress who took our order, didn't seem to know what we were talkiing about when we said that we had ordered from the gluten free menu and, due to cross contamination, we couild not just remove the bread and then eat from that plate.

    The manager came over to find out what was wrong, and was horrified to hear what happened, but we turned down his offer to give us free gift certificates for the UNO resaurant chain, and told him that we would never be back.

    For $12.99 a meal we didn't expect great food - but the risk of getting sick really turned us off to this chain.

  9. A Faster Test For The Food Protein That Triggers Celiac Disease - Analytical Chemistry Journal

    14 Nov 2008

    "....scientists describe development of a new sensor that detects antibodies to the protein gliadin, a component of gluten. Laboratory tests showed that it is superior to the so-called enzyme-linked immunosorbent assay (ELISA), now the standard test for gliadin. It took the new test barely 90 minutes to detect gliadin in the parts per billion range, compared to 8 hours for the ELISA test. Although both tests were equally accurate, the new sensor would be easier to use at food manufacturing plants, the researchers note."

    Open Original Shared Link

  10. Just curious to know if you appealed the decision by your insurance company who did not cover the cost of a nutrition consult in Celiac Disease. My own insurance denied it, but was covered when it went through the medical review process. As we all know, the only treament for Celiac disease is dietary modification.

    For the record, I am insured by Blue Cross and Blue Shield. I am also a former nurse case manager who knows if you present a logical case to a review board they aree likely to see it your way.

    Do you have insurance through an employer? The Human resources liason with the insurance company can also try to work this into the policy the next time negotiations come up. Just a thought.

    I now have Blue Cross and Blue Shield, but was insured by United Health Care when I had medical tests done at Columbia Celiac Center

    We did not petition the insurance company for payment of the dietician servics at Columbia, but your's is a good suggestion for anybody else that goes to a dietician that is not covered.

  11. Can anyone recommend a great dietician in the nyc area? I see Dr. Green at the Columbian Celiac Center, however Anne Lee has left, and the nutritionist currently on board does not accept insurance. I would really prefer seeing someone who does accept insurance, seeing as times are tight! I had seen another dietician who was great, but probably isn't quite as thorough re; celiac as I would like. Any help is appreciated. Thanks!

    I had a lot of tests done at Columbia's Celiac Center, paid for by my insurance. When I saw Anne Lee, she did not accept my insurance, and I'm not sure whether she was taking any others, either. A friend of mine, who also has Celiac, has recently gone to a dietician in NYC that did not accept his insurance, so he also paid cash. He said that the only way his insurance will pay for a dietician is in the case of diabetes. It's probabaly because most dieticians are not doctors.

  12. I have seen people post with negative Enterolab results.

    I have not EVER seen anyone post that they were negative for genes with Enterolab. You either have Celiac genes, "gluten sensitivity" genes (not officially recognized) or one of each.

    According to Enterolab the vast majority of the population is genetically susceptible to gluten sensitivity. Having "the genes" shouldnt come as a surprise to anyone who orders the genetic testing...its pretty much guaranteed that you will have them.

    Thank you, Rachel, for clearing that up.

  13. okay so i have read this whole thread from start to finish and am now really really unsure as to whether some vodkas are gluten free and some arent?i tend to only drink vodka and a wide range of brands, but mainly just the plain smirnoff. does anyone actually know?thanks

    Chopin Vodka is made from potato. It's not hard to find in liquor stores and is considered by vodka experts to be one of the best tasting vodkas in the world. I'm no expert, but it tasted pretty good to me. There is at least one other potato vodka, but I don't remember the name.

    Open Original Shared Link

  14. Remember that Celiac is only one of many causes of anemia. About seven years ago, I was extremely anemic, and my ferritin level was zero. At this time, before I was diagnosed with Celiac, I had colonoscopy, middle bowel, and non-celiac specific endoscope tests done to see if there were problems. The results were all negative. The doctors were not looking for Celiac, although that should have been the first thing to test for. I went on iron pills and this improved my anemia somewhat. I still had many other problems, and later got the blood tests and endoscopy that confirmed Celiac.

    You can try going totally gluten-free, see if you feel any better, and get your Iron/Ferritin retested. Another option would be to get more Celiac tests now including an endoscope for it (Don't stop eating gluten if you want to try this).

    If there's still no improvement, then maybe it's time to start getting tested for other problems via colonoscopy, non-celiac endoscope, middle bowel, etc. It could ge non-GI related, also. Keep going to doctors until you get an answer.

  15. I understand where you're coming from, Larry, but the suits and the scientists at Alba could be on different wavelengths. At least it's a start, and that's something. If they get it on the market, other research will hopefully follow.

    I do not understand if AT-1001 is supposed to be a complete protection against immune responses to any amounts of gluten, or just enough to cover the equivalent of one slice of bread a day. From the way the article is written, it's for the former.

    Have a good one.

  16. ORLANDO, Fla., Oct. 7 /PRNewswire/ -- Alba Therapeutics Corporation presented results from two clinical studies this week at the American College of Gastroenterology (ACG) 2008 Annual Scientific Meeting. Data from study CLIN 1001-004, the first Phase IIa trial conducted in celiac disease and the first to assess the prevention of immunologic changes in celiac disease, showed that larazotide acetate (AT-1001) successfully demonstrated prevention of gluten-induced immunologic changes in celiac patients.

    Complete article:

    Open Original Shared Link

×
×
  • Create New...