Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 > My 9 year old daughter, Danelle, (autistic) is going to " genetics > clinic " for a two-year follow-up visit next week (Tulane). > In the past Danelle has had an MRI of the cranium, EEG, chromosomes > and amino and organic acids and carnitine studies -- which have all > been normal. In reference to the MRI, it " revealed questionable > delayed myelination. Dr. Tilton felt this MRI was within normal > limits. An EEG was normal. Teh possibility of mitochondrial > disorder was brought up. Our diagnositic work-up during the past > clinic visit included normal repeat of the plasma amino acids and > urine organic acids. Carnitine analysis was normal as well. " > I am tempted to ask them to do heavy metal or mineral test... any > suggestions as to what to ask for would be helpful. > Thanks! > /files/HOW_TO_hair_test Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 DDI hair analysis and then apply the counting rules. S I am tempted to ask them to do heavy metal or mineral test... any <BR> suggestions as to what to ask for would be helpful.<BR> Thanks!<BR> <BR> =======================================================<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 No my Dr. dose not do estrone because it is E2 Estradiol that causes the problem and dose not do SHBG because the Free T is better. Sounds to me like he is on the right track. Phil miscellaneousmedia <miscellaneousmedia@...> wrote: My endo just ran tests for estradiol but not estrone; total and free T but not SHBG. He also did Free T 4, Free T3 and Revrese T3 and a prolactin level. Is he remiss in not doing esterone and SHBG? Anything else he should have tested? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi All, Thank you all so much for the information. I am on a search for LLMD. So far I have not been able to locate one who takes health insurace..UGH! I spoke with 3 offices and all said it will be 500.00 or more to see the Dr. Also would like to add my test kit for IGENEX arrived. I spoke with a research scientist who explained to me to have the blood drawn on a full moon. How she explained it made sense to me. The journey for an answer has began.. wish me luck Thanks Yev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 good luck, we never in 2 years have found a llmd that takes insurance. Begley - Temporary Placement Manager From: mittenhead02131 <mittenhead02131@...> Subject: [ ] Re: Testing question Date: Thursday, August 7, 2008, 10:15 AM Hi All, Thank you all so much for the information. I am on a search for LLMD. So far I have not been able to locate one who takes health insurace..UGH! I spoke with 3 offices and all said it will be 500.00 or more to see the Dr. Also would like to add my test kit for IGENEX arrived. I spoke with a research scientist who explained to me to have the blood drawn on a full moon. How she explained it made sense to me. The journey for an answer has began.. wish me luck Thanks Yev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Hello, Sam Donta in Boston takes insurance, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 About two years ago i was given a blood test for celiac at my request. Not sure which antibodies they tested for. It came back negative but I had been on a mostly gluten free diet at the time. I discontinued the diet after the test was done. I have many of the symptoms associated with celiac. I am currently on a waiting list for exploritory shoulder surgery due to pain in arm and back for over a year now. I would like to be retested for celiac before I have the surgery. Should I go with another blood test or should I ask for the biopsy. I have Kaiser and see the doctors in Vallejo. Thanks for any advise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Where? Do these "false negatives" you mention refer to people who have gone on a gf diet prior to being tested? In a message dated 9/16/08 9:39:23 AM, hideehoman@... writes: I've read of false negatives being ~30-40%!!! **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 My adult daughter tells me her doctor said her negative CD readings were so pronounced that a biopsy was unnecessary. I'm not entirely comfortable with that, but she's grown up. She has no typical CD symptoms. She takes very good care of her health, and she knows, from me, what important CD diagnosis is. H. In a message dated 9/16/08 10:35:58 AM, l@... writes: The false negatives are people who biopsy positive and are on a gluten diet. Basically, if a blood test comes back positive then you have an answer, but if it comes back negative then you do not have an answer as to whether or not you have celiac. **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 A well-established GI in SF told me the TTG test is accurate even for those who have stopped eatiing gluten. This just doesn't sound right to me. I asked him twice, because I thought I'd misheard. Has anyone else heard anything like this? H **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 I had no symptoms when I was diagnosed six years ago. Now, I'm extremely sensitive and have overwhelming reactions that last for days. I keep looking for solid information about this. H. In a message dated 9/16/08 10:52:34 AM, bronwyn@... writes: In these three years since diagnosis I have become ever more sensitized to gluten – **************Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Doctors rarely (if ever) recommend a biopsy without doing a blood test. There are many reasons to repeat the blood test, including: you may have had a false negative due to your low-gluten diet at the time; you may have been given an incomplete blood panel (very common) or just the wrong test altogether (that also happens, believe it or not); and, some people test negative one year and positive the next after the celiac progresses and they develop more antibodies. Keep in mind that " seronegative celiac disease " exists, which means you can have celiac disease but test negative on all the blood tests (researchers believe about 9% of celiacs are seronegative). Dr. ine Mysliwiec is a gastroenterologist at Kaiser Vallejo and very knowledgeable about celiac disease, including testing. Can you get a referral to see her or at least have her advise your doctor about appropriate testing? http://www.permanente.net/homepage/kaiser/doctor/paulinemysliwiec/ Good luck - - Iscol www.northbayceliacs.org > > About two years ago i was given a blood test for celiac at my request. > Not sure which antibodies they tested for. It came back negative but I > had been on a mostly gluten free diet at the time. I discontinued the > diet after the test was done. I have many of the symptoms associated > with celiac. I am currently on a waiting list for exploritory shoulder > surgery due to pain in arm and back for over a year now. I would like > to be retested for celiac before I have the surgery. Should I go with > another blood test or should I ask for the biopsy. I have Kaiser and > see the doctors in Vallejo. Thanks for any advise. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 I don't think the current blood test is particularly " accurate " . I've read of false negatives being ~30-40%!!! And many many anecdotal datapoints of people being seronegative but biopsy positive. And a much larger group that's seronegative but celiac-like symptoms go away w/ GF diet. (Who know if they're celiac though) > > I would imagine your physician wouldn't even approve of the biopsy without > first running a blood test, which is simple, much less expensive, and accurate, > if one has not been on a gluten free diet. It sounds like if you were tested > now, you could be more sure of the accuracy of the test result. Good luck! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Neither a blood test nor a biopsy will come back positive if you've been on a gluten-free diet, so it's necessary to do an extended gluten challenge (at least 3 months) prior to the tests. Otherwise it's not likely to show anything. You can have gene testing as a preliminary without being on gluten, though. If you've been eating gluten since that test, I would definitely try another blood test, but make sure they test for both kinds of antibodies as well as checking that you produce the antibodies at all.... I believe it is three different tests in total. Some old school doctors only test for the first type of antibodies discovered and those are the least reliable. - > > About two years ago i was given a blood test for celiac at my request. > Not sure which antibodies they tested for. It came back negative but I > had been on a mostly gluten free diet at the time. I discontinued the > diet after the test was done. I have many of the symptoms associated > with celiac. I am currently on a waiting list for exploritory shoulder > surgery due to pain in arm and back for over a year now. I would like > to be retested for celiac before I have the surgery. Should I go with > another blood test or should I ask for the biopsy. I have Kaiser and > see the doctors in Vallejo. Thanks for any advise. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 The false negatives are people who biopsy positive and are on a gluten diet. Basically, if a blood test comes back positive then you have an answer, but if it comes back negative then you do not have an answer as to whether or not you have celiac. On 9/16/08, TrVerb@... <TrVerb@...> wrote: > Where? Do these " false negatives " you mention refer to people who have gone > on a gf diet prior to being tested? > In a message dated 9/16/08 9:39:23 AM, hideehoman@... writes: > > >> I've read of false negatives being ~30-40%!!! >> > > > > > ************** > Psssst...Have you heard the news? There's a new fashion blog, > plus the latest fall trends and hair styles at StyleList.com. > > (http://www.stylelist.com/trends?ncid=aolsty00050000000014) > -- Sent from my mobile device Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 My original GI dr. (The Dr. Aron who has been mentioned several times on this list), said that the test is about 98% accurate – that there are some false negatives but that if you send the test to one of two labs (Enterolab or Prometheus) AND have not abstained from gluten it is 98% accurate. He said that the GI community are not entirely in agreement as to what constitutes a Celiac Diagnosis. He said, that, on the scale, he diagnoses Celiac with lower readings than other doctors but that he has had great success with that. I got the copies of my lab readouts…they were not off the scale high, and they were normal for all but the ttg reading. The lab notes state that the TTG reading I had correlated with Celiac Disease – I’ve shown the results to Dr. Uma Mahadevan – she agreed. Two years on I had to have a capsule endoscopy – no sign of damage to my small intestines. In these three years since diagnosis I have become ever more sensitized to gluten – other people can detect when I have eaten gluten often before I do due to the look on my face – some sort of stressed/ sad/ bothered appearance. From: [mailto: ] On Behalf Of flatcat9@... Sent: Tuesday, September 16, 2008 10:39 AM Subject: Re: [ ] Re: testing question My adult daughter tells me her doctor said her negative CD readings were so pronounced that a biopsy was unnecessary. I'm not entirely comfortable with that, but she's grown up. She has no typical CD symptoms. She takes very good care of her health, and she knows, from me, what important CD diagnosis is. H. In a message dated 9/16/08 10:35:58 AM, l@... writes: The false negatives are people who biopsy positive and are on a gluten diet. Basically, if a blood test comes back positive then you have an answer, but if it comes back negative then you do not have an answer as to whether or not you have celiac. ************** Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 No, I haven’t heard that. Don’t know if you’re referring to Dr. Aron. But, I know that his opinion is that you keep testing until you get a negative and then you know the antibodies have cleared and you are really gluten free. From: [mailto: ] On Behalf Of flatcat9@... Sent: Tuesday, September 16, 2008 10:57 AM Subject: Re: [ ] Re: testing question A well-established GI in SF told me the TTG test is accurate even for those who have stopped eatiing gluten. This just doesn't sound right to me. I asked him twice, because I thought I'd misheard. Has anyone else heard anything like this? H ************** Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 That’s good to hear that I’m on the only one. Again, said Dr.Aron, told me that some people become hyper-sensitized – others seem to be finewith a low level of cross-contamination. I take it as a mixed blessing, sincethe hyper-sensitivity makes me very careful for me and for my son. He did tellme that sometimes, this hyper-sensitivity diminishes. Interestingly, tho, myhusband, who does not have celiac disease now gets a reaction if he eats glutenin any quantity – he is largely gluten free and becoming more so because glutennow seems to give him a bloated stomach and we think may be a migraine trigger From: [mailto: ] OnBehalf Of flatcat9@...Sent: Tuesday, September 16, 2008 10:58 AM Subject: Re: [ ] Re: testing question I had no symptoms when I was diagnosed six years ago. Now, I'mextremely sensitive and have overwhelming reactions that last for days. Ikeep looking for solid information about this.H.In a message dated 9/16/08 10:52:34 AM, bronwyn@... writes:In these three years since diagnosis I have become ever moresensitized to gluten –**************Psssst...Have you heard the news? There's a new fashion blog, plus the latestfall trends and hair styles at StyleList.com.(http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 I'm in the same boat--was asymptomatic until diagnosis; how I have excruciating migraines within 10 minutes of accidentally ingesting gluten. --lp ________________________________________ From: [ ] On Behalf Of flatcat9@... [flatcat9@...] Sent: Tuesday, September 16, 2008 10:58 AM Subject: Re: [ ] Re: testing question I had no symptoms when I was diagnosed six years ago. Now, I'm extremely sensitive and have overwhelming reactions that last for days. I keep looking for solid information about this. H. In a message dated 9/16/08 10:52:34 AM, bronwyn@... writes: In these three years since diagnosis I have become ever more sensitized to gluten – ************** Psssst...Have you heard the news? There's a new fashion blog, plus the latest fall trends and hair styles at StyleList.com. (http://www.stylelist.com/trends?ncid=aolsty00050000000014) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2008 Report Share Posted September 18, 2008 On Tue, 16 Sep 2008, flatcat9@... wrote: > I had no symptoms when I was diagnosed six years ago. Now, I'm extremely > sensitive and have overwhelming reactions that last for days. I keep > looking for solid information about this. > H. > > In a message dated 9/16/08 10:52:34 AM, bronwyn@... writes: > > > In these three years since diagnosis I have become ever more > sensitized to gluten ? The " first " symptom I had at age 39 was DH (Dermatitis Herpetiformis), and I didn't even realise it was DH until about a month later. The doctor thought it was an allergic reaction. I started getting the GI symptoms after I had been gluten-free for a while and then occasionaly cheat and have gluten. Over time the GI issues got worse every time I cheated, until I finally stopped cheating. Mu blood test, taken when I had been GF for about 6 weeks, were negative (which is why I occasionaly would cheat). Looking back, I had some symptoms as a child - easy bruising, frequent ear infections - but back then, they weren't considered anything abnormal or symptomatic of any real disease. --Ruth Anne Quote Link to comment Share on other sites More sharing options...
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