Jump to content

bsiyatadshmayah

Advanced Members
  • Content Count

    14
  • Joined

  • Last visited

About bsiyatadshmayah

  • Rank
    Contributor
  1. That is interesting indeed. Do you have any idea how I could find out if that is the case with this test? I had the biopsy done. I will have the results next week, both the blood work and the biopsy and will let the community here know when they are in.
  2. I'm specifically looking for someone who understands the ARA test. I realize that it is considered outdated. BUT, I get a small amount of conflicting information about it. Since it was done and it was the only positive value...and it was positive twice, I think I need to understand it with certainty. On page 146 of Danna Korn's book, "Kids With Celiac" there is a chart which lists the various blood tests, their sensitivity, specificity etc. The ARA is listed. According to her chart, ARA is not sensitive, but it is very specific. Now, the GI who is going to be doing the biopsy called me back to answer my question. I wanted her opinion. She told me the ARA is not specific!! Very confusing. All the lab sites I've looked up say it is very specific to celiac disease. Not sensitive means there is a significant number of people who are celiac positive, where the ARA test will come back negative (40%). But if it does show up positive, since it is specific, it is a fairly certain sign of celiac disease. So, who's right? The GI, or all the literature I've read?
  3. Yes, I know...he did use some outdated tests. BUT, I'm actually grateful for the ARA, as that is the one that showed up positive. If that had been excluded because it's considered obsolete, I may have been overlooked. What I've read (pg 143 of "Kids With Celiac" by Danna Korn being just one example) is that the ARA is not sensitive, but it is very specific. Only folks with DH or celiac disease come up positive. In fact, it is considered 100% predictive of celiac disease when positive. I've just found out that on both my tests, ARA was positive. In the first test, oddly enough, the positive was higher. It's odd because I'm eating a lot more gluten now then I did at the time of the first test. But that may be accounted for by something as simple as the possibility of a different lab tech running the tests. It was IFA, and I think I remember those being somewhat subjective. Good news: I just had my first appointment with a GI yesterday. They drew blood for the tTG and Total IgA. Results will be back in 5 days. Also, I will be going in for a biopsy in a few days, and the GI doing the biopsy has many celiac disease patients in her practice.
  4. First of all, thank you for your response. All the mystery and suspense causes me to need to communicate with others in similar situations about this. I'm sure everyone here can relate, otherwise none of us would be here in the first place. Regarding Reticulin abs, yes it is considered an outdated component of most celiac disease panels. According to the chart on page 146 of "Kids With Celiac" by Danna Korn, ARA (an alias for Reticulin abs, according to Mayo Medical Laboratories site: http://www.mayomedicallaboratories.com/test-catalog/Overview/9275 is 100% specific for celiac disease. I've read that at other sites, but since it is considered outdated due to it's lack of sensitivity (40% of folks with active celiac disease will not have positive ARA) it is not used much anymore. I guess my GP is using up some old lab kits or something. Of course, I'm only correct about the 100% specificity IF this test was Reticulin abs IgA, rather than Reticulin abs IgG. If it is IgG, then it's almost useless for me. I've deduced from hours of reading up on Reticulin abs that if it doesn't specify IgG, then it is IgA. I surely do hope that is correct. Yup. Yes. I saw that when the results came in the first time around. After doing some reading, I did request a different panel that would include tTG but my GP said he couldn't order it. I had the second round done with the exact same panel for the sake of comparison. My GP has suggested I move on to a GI. I certainly hope this practice I'm going to has some docs who are up-to-date. I do have a list of questions which I lifted from "Kids With Celiac" that I will be asking in order to check up on them. Yes. I think I will be requesting a Total IgA as well. I sure hope they are helpful and not insulted if I know a bit about this. I'm not thrilled about a gluten challenge lasting for months. It's already ruined my summer. I haven't felt this miserable on a day-to-day basis for years. I've been studying and studying this lab report, and have spent hours searching for answers about it, what it reflects, what the numbers mean etc. I will no doubt do the same with the second one when it is in my hands. I'm really REALLY wondering why or how the Reticulin abs could go down. I am gathering from my reading that it may still be in the positive range. Since this is the only component of the panel that is hinting at anything, that is the component where I am looking for answers from someone out there who may know more about it, until I get some more clues. Another question: Does anyone out there have any experience with this "diagnostic" tool? The "SpectraVision BioBalancing Test." I put "diagnostic" in quotes because the homeopaths and N.D.'s in many states refuse outright to use the term diagnosis in conjunction with this tool. However, I found one practice that blends allopathic with other forms of health care in Georgia which names it as a diagnostic tool. In most states, health care practitioners would get slapped with some heavy fines and perhaps worse if they made any diagnostic claims. You should see the disclaimer page they make you sign in this state before proceeding. Some people, most notably M.D.'s, claim it is pure quackery, and others swear by it. My chiropractor has told me that it can be useful in pointing someone in the general direction, but that it can really be used to say whatever the technician (N.D., homeopath, chiropractor, nutritionist) wants it to say. So she cautioned against allowing anyone to use it if they have any information on the person being tested. Nothing, nada. Not nutritional, famililial, symptomatic. NOTHING. Just wondering if anyone with experience as a "client" has any ideas as to how reliable these results from this thingamajiggie might be???
  5. Okay. I've been reading posts on testing for hours now. So, I'm wondering if someone might help me understand my results a bit more. Brief History: I've been low gluten for 5+ years. Not rigorous, but I feel better on low carbs, and so I don't honestly crave grains of any sort. I can't say I was always this odd, but I am now. I began a low carb diet initially due to a diagnosis of Candida Albicans overgrowth, and found that my allergies and asthma diminished. If I was rigorous enough, they even disappeared on this diet. My asthma has nearly killed me a couple of times, so this is significant for me. Recently, my mother was diagnosed with celiac disease. I found out shortly afterwards that her sister was also diagnosed with celiac disease 10 years ago. Her other sister had hyperthyroidism a number of years ago, until the doc killed her thyroid with a radioactive pill. Now she lives on Synthroid. So, there is some autoimmune disease in the family. My father died of esophogeal cancer. There's lots of Irish and Scottish folks in our family's history. I hear the Irish are doomed, that's why I mention it. We're crazy too. Anyway. directly as a result of my mother's diagnosis, I went on a 2 week, half hearted gluten challenge in order to have some blood tests done. Reticulin abs - 1:40 - positive (they don't give a reference range) EMA - negative - no numbers given Gliadin ab, IgA 3.7 (<20 negative) Gliadin ab, Igg <1 (<20 neg) This was sent in to Mayo Medical Laboratories by my GP. He felt the results warranted a second round of tests and a more rigorous gluten containing diet. I requested a more complete panel, but he said I'd have to make an appointment with a GI for that. So, I did the exact same tests in the second rounds after 8 more weeks on a much more rigorous (and uncomfortable) gluten challenge. The results have confused me. Reticulin abs - 1:20 - not clear if that is a positive or not Everything else is exactly the same! How could that be?? One would think the numbers may have fluctuated a bit, even if not going into the positive range, especially the 3.7 number. I don't know much about medical testing, but that looked odd to me. Maybe someone here who is medically trained knows about this. Also, it is very odd to me that the Reticulin abs numbers actually went down, as my symptoms, some of which I haven't had for 5 years, when up dramatically. I understand that Reticulin is no longer considered useful for diagnosing celiac disease, but it sheds light on the subject for me. From what I've learned, it is not sensitive (40% of those with celiac disease test negative on Reticulin abs) but it is very specific. I have read from some sources that it is considered 100% predictive of celiac disease. I think I may have read it in "Kids with Celiac Disease" but I can't honestly recall. I have also read that if the test does not specify whether this is Reticulin IgA or IgG, it is IgA. Mine didn't specify. I will be asking the GI more about this...it seems that the secret to correctly interpreting tests are closely guarded in the medical world, and possibly hold some legal liability. I am scheduled to see the GI for the first time in a couple of days. In neither case was my Total IgA tested, so I will be certain to request that, as it seems to greatly effect the overall accuracy of these blood tests. Thank you for taking the time to read this post. b'siyata d'shmayah (with the help of Heaven)
  6. Did he do a skin biopsy? Maybe you said that already, but please humor me. This is all a symptom too...of the general ignorance in the "health care" industry regarding celiac disease. Don't buy it. Have you read lately how many Italians are being diagnosed with celiac disease?? Europe is waaay ahead of us on this one. Yup. They're all snarling after one another. I personally think Dr. Fine is on to something. I'm also guessing that he's waiting to publish for his own reasons, possibly to do with the fact that the competition regarding medical research is fierce out there. I seem to remember reading somewheres long ago that research can, and often is stolen. Just a guess. I have no factual basis that I can point to for this theory of mine. Go with your gut. (pun intended) Pursue a definitive diagnosis. I am also in the midst of my search for a definitive diagnosis. I haven't yet availed myself of Dr. Fine's services. But I've done some reading on him. He strikes me as an ethical man. Again, I have no facts to back this up. Just my "gut" instincts. hehehe
  7. Bacterial overgrowth is considered a symptom of celiac disease according to...I think according to "Celiac Disease: A Hidden Epidemic". I've read "Dangerous Grains, the above mentioned book and "Kids with Celiac Disease" plus I've been perusing the internet and now looking at forums. I can't recall if that information was from the first book, but I think it was. I know that one can be made more vulnerable to Candida Albicans overgrowth. The herbal remedies are also a good course of action for the overgrowth, but I wouldn't rule out celiac disease. Your doc might not be as up on the latest research as he should be. Many aren't, and the information on celiac disease has exploded only in the last 10 years or so.
  8. I'm going to be sick Now I'm reading that I should be on this gunk for THREE or FOUR months?? I've only been on a gluten challenge for 10 weeks now, after being very gluten light for over 5 years. I don't know how much longer I can pull this off....I'm popping out of my clothes for one thing. I have an appointment with a GI in a couple of days. I am bringing with me some ambiguous blood work. I hope he is enlightened. I'll find out. I have a book here that has some "test questions" I can ask him, acting as if I don't know the answer. If he doesn't know the correct answer, he's not up-to-date, so I move on.
  9. YES they do too!! Don't believe your doctor on this. Too many docs are so busy reading the piles of literature the pharmaceutical salesmen are leaving them to have time to keep up with the latest research. PLUS, there is a lot of "the latest research" to keep up with...it's not easy. Your antibody levels can drop within days of dropping gluten from your diet. I think some sources recommend everyone going in for celiac panels be tested for total IgA. A low total IgA will render blood tests unreliable.
  10. I'm just going to sound in on my opinion regarding going gluten-free. Yes, if one goes through all the hoops and comes back with negatives on all tests, and there are no other options, then going gluten-free and see how you feel should be considered. Another reason to go gluten-free in the absence of a definitive diagnosis is one suspects that eating gluten will cause irreparable harm. If a child, for instance, is really suffering, many parents will just go gluten-free. But having said that, there is a downside to going gluten-free. All tests for celiac, except a DNA test, will eventually be useless. The longer the gluten-free diet, the more useless any blood tests or biopsies, for most people. The other disadvantage to going gluten-free is the social aspect. To be truly gluten-free can be a socially isolating experience, especially at holidays, birthday parties, sports celebrations and the like. This is especially true for people of the Catholic and Jewish faiths. I read in "Celiac Disease: A Hidden Epidemic" that 50% of those with celiac disease fail at their diet during these times. If one feels they are merely gluten intolerant, then an alternative, in order to avoid these potentially painful social experiences, is to go "low gluten". But, this won't help much if you are truly celiac or especially gluten sensitive. And if you are allergic, low gluten could kill you. That's why seeking clarity seems to me to be a good option. Often not an easy one however.
  11. There is a syndrome that baker's get from working with flour. Beekeepers also have a higher incidence of allergies to beestings, as do their families. With allergic reactions, it has to do with the frequency of exposure. I am no doctor, but your symptoms strongly suggest celiac disease AND wheat allergy. It is not unusual for someone with celiac disease to also have at least a temporary intolerance to lactose, as the enzyme lactase is produced by the villi, which are often damaged or destroyed (usually temporarily). It takes about 6 months, sometimes longer for this damage to heal after going gluten-free. It would be worthwhile to find out on both counts, as celiac disease poses long term risks, and allergies can cause an immediate life-threatening event.
  12. From what I've read, wheat allergies could cause potentially life-threatening reactions very quickly, such as an anaphylactic attack. Yet, the symptoms between celiac disease and wheat allergies can also very similar. I know of a little guy who you'd swear has Dermetitis Herpetiformis (a form of celiac disease) by looking at him, and the doctors were sure that was what he had, at first. But his very thorough intestinal pictures (they looked through the entire intestinal tract) were negative, as were his blood tests. His family later found a clinic that specializes in food allergies, and his IgE levels was out of this world. There is only one other patient at that clinic, an adult, with higher IgE levels. It has taken over a year of being gluten free for his skin to improve. His wheat allergies (and other food allergies) were potentially life threatening from the loss of skin coverage alone, as well as from the severe malnutrition, and it was obvious he was malnourished, in spite of having a phenomenal cook for a mother. Another difference between a wheat allergy and gluten intolerance or celiac disease is that one can grow out of food allergies. One doesn't grow out of celiac disease. Untreated celiac disease can lead to other serious illnesses. So, in my opinion, it is important to get a definitive diagnosis if at all possible. I am currently on that path, and it is very, very inconvenient, uncomfortable and annoying, to say the least. Thus far, and I am only 10 weeks into the process, I personally advocate pursuing the diagnosis. 'Course, I'm already very tired of eating all this bread and all these noodles. I was pretty much grain free for more than 5 years due to a Candida Albicans overgrowth diagnosis that mysteriously kept returning. I barely consider most bread, crackers and noodles food anyway. So, I'm on a high "gunk" diet in my opinion, and I drool at the sight of a plate of sauted veggies, which I can barely find room for after two slices of bread. Plus, I'm gaining weight and my wardrobe is shrinking. So I'm not a hardliner on this. It really depends on one's circumstances. Mine necessitate a definitive diagnosis if possible. BUT, it may not be possible and that has to be recognized. I think there may be many variables that aren't yet recognized.
  13. Regarding weight loss, sometimes there is no weight loss because the intestinal damage is not extensive enough to stop the body from absorbing carbohydrates. In fact, I've read that the latest research points to more folks with celiac disease being overweight than underweight. Malabsorption often causes obesity. The body is craving the vitamins and minerals but is only getting carbs, so we keep eating.
×
×
  • Create New...