How many of you have been tested for celiac spru ?

Discussion in 'Fibromyalgia Main Forum' started by danaDoo, Jan 18, 2006.

  1. danaDoo

    danaDoo New Member

    Have any of you had the blood test for celiac spru if so could you please share what the results were ?
  2. Gly

    Gly New Member

    I had the test a few weeks ago but the results aren't in yet.
  3. Jen102

    Jen102 New Member

    the entero labs testing. the results said no to "true" celiac sprue, but said i was making antibodies to gluten, and that two of my gene formations were positive for gluten intolerance. i do much better when i avoid all grains. i ate some corn chips with salsa during the holidays and my pain level went thru the roof, and my mood to the basement. ha. hope you get some results. blessings to you. jen102
  4. KelB

    KelB New Member

    I had a bi-directional endoscopy and while they were in there, they took a biopsy to test for Celiac. Came back negative.
  5. laspis1

    laspis1 New Member

    my test for spru came back negative, however I do too have Gluten anti bodies. Have to stay away from most grain, rice is fine. I have figured it few years before I was tested for gluten tolerance that I cannot it grains. I would always feel terrible after eating pasta, but if I stayed away I was fine. So I have changed my diet to limit and eventually exclude that. This is probably why I did not have the spru. Also, I have read somewhere that there is a difference between gluten intolerance and celiac. When I com across this information I will post it here.
  6. danaDoo

    danaDoo New Member

    Subject: connection possible possitive antibody link in fibromyalgia


    Dear Robert,

    After going to so many doctors and having so many test I had been previously diagnosed with fibromyalgia but, there wasn't a way to screen for it only triger points and other symptoms it was thought to be in peoples heads but, now gets more research. I was found to have osteoporosis and since I was so young they ran other tests one was for celiac spru an alergy to wheet or gluiten. There is a blood test for this they check for two antibodies if both come back positive then you have it if one comes back positive then they go down inside and biopsy to check and make sure you don't have an absorbancy problem . one of my anitbodies came back positive but other test came back negative. I realized that the one antibody was probobly positive because of the fibromyalgia and want to do a study on fibro patients to see if they have the antibody as well. If my theory is correct this would be a new way to diagnose Fibromyalgia and maybe get to a cure. I don't remember what the antibodies were I have them written down somewhere but , they would be the ones they look for in celiac sprure or celiac desease. Maybe a nobel prize who knows but, if nothing else possible help for people who suffer with fibromyalgia. In fibromyalgia patients Candida albicans (an overgrowth of yeast in the body ) is thought to be a possible cause. In my opinion this maybe be what makes for the positive antibody in the celiac blood test.
    To prove this a study of fibromyalgia patients would need to be done to see how many have the one positive antibody but, don't have celiac spru. I believe it is anti-gliadin antibody level
    Its your hands now what do you think?

    Love,
    Dana
  7. danaDoo

    danaDoo New Member

    Subject: connection possible possitive antibody link in fibromyalgia


    Dear Robert,

    After going to so many doctors and having so many test I had been previously diagnosed with fibromyalgia but, there wasn't a way to screen for it only triger points and other symptoms it was thought to be in peoples heads but, now gets more research. I was found to have osteoporosis and since I was so young they ran other tests one was for celiac spru an alergy to wheet or gluiten. There is a blood test for this they check for two antibodies if both come back positive then you have it if one comes back positive then they go down inside and biopsy to check and make sure you don't have an absorbancy problem . one of my anitbodies came back positive but other test came back negative. I realized that the one antibody was probobly positive because of the fibromyalgia and want to do a study on fibro patients to see if they have the antibody as well. If my theory is correct this would be a new way to diagnose Fibromyalgia and maybe get to a cure. I don't remember what the antibodies were I have them written down somewhere but , they would be the ones they look for in celiac sprure or celiac desease. Maybe a nobel prize who knows but, if nothing else possible help for people who suffer with fibromyalgia. In fibromyalgia patients Candida albicans (an overgrowth of yeast in the body ) is thought to be a possible cause. In my opinion this maybe be what makes for the positive antibody in the celiac blood test.
    To prove this a study of fibromyalgia patients would need to be done to see how many have the one positive antibody but, don't have celiac spru. I believe it is anti-gliadin antibody level
    Its your hands now what do you think?

    Love,
    Dana
  8. laspis1

    laspis1 New Member

    Dona, anti-gladian (not sure if I spelled it right) antibodies is correct. That is what came back positive for me.
  9. angelkisses6

    angelkisses6 New Member

    I have celiac sprue, i was told 4 years ago,amd it seems like from there everything went right down the potty,i just kept getting something else wrong with me,dont know if its all connected though.Take care all,marieann
  10. danaDoo

    danaDoo New Member

    Your e-mail was forwarded to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse by the NIH Information Staff for response. NIAMS, a part of the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services, supports medical research into the causes, treatment, and prevention of diseases of the bones, muscles, joints, and skin.



    To locate information about a possible connection between celiac disease and fibromyalgia, we conducted searches on MEDLINE/PubMed using the terms “celiac disease and fibromyalgia.” We located 4 articles using these terms. MEDLINE/PubMed is a computerized database provided by the National Library of Medicine that indexes articles and research reports in the medical literature. It is available online at: http://pubmed.gov. You may want to conduct your own search using more specific criteria.



    The full text of the articles identified through MEDLINE/PubMed may be found in the periodical section of a medical, university, or large public library. Before visiting, you should call the library to check on journal availability and library use policy. You may also find it helpful to contact a librarian to help interpret the search citations and to locate and acquire the full text articles.



    NIAMS research and research training is generally accomplished through the mechanism of investigator-initiated research grants. All research grants, including ones on fibromyalgia, must undergo a rigorous peer review process before they can be funded. After funded studies are completed, the results are usually submitted to peer-reviewed journals for publication, where the scientific community can read about them. The health information NIAMS helps disseminate also must be science based and rigorously reviewed by the scientific community.



    If you are interested in locating researchers that may be interested in working with you, you may find the following information helpful:



    To find out information about current research efforts, we suggest you search ClinicalTrials.gov. ClinicalTrials.gov is a searchable database that provides the public easy access to information on clinical trials for a wide range of diseases and conditions. The NIH, through its National Library of Medicine (NLM), developed this site. ClinicalTrials.gov is designed to be the most comprehensive central listing of clinical studies sponsored by the NIH, other Federal agencies, the pharmaceutical industry, and nonprofit organizations in the United States. It is available on the Internet at http://clinicaltrials.gov.



    Further information about NIAMS clinical trials in particular, as well as contact numbers, can be found on the Internet at www.niams.nih.gov/hi/studies/index.htm, or you can call (301) 495-4484. You may also be interested in the NIAMS Intramural Research Program (IRP) Web site at http://www.irp.niams.nih.gov/.



    In addition, you may be interested in the NIAMS Core Centers of Research, which promote collaboration among scientists of various disciplines conducting research with a common theme. You may wish to contact the researchers in our Rheumatic Diseases Core Centers:

    http://www.niams.nih.gov/rtac/funding/grants/corelist.htm



    You may also wish to search CRISP, a major biomedical database containing information on research supported by the U.S. Department of Health and Human Services. Most of this research consists of grants, contracts, and cooperative agreements conducted by investigators at universities, hospitals, and other research institutions. CRISP contains information on research programs of the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). CRISP is available on the Internet at http://www.crisp.cit.nih.gov/. You may search the research projects on CRISP from the CRISP Query form.



    We have a publication “Questions and Answers about Fibromyalgia” that is available online at the following link: http://www.niams.nih.gov/hi/topics/fibromyalgia/fibrofs.htm. If you would like a print copy of this publication, please reply to this e-mail with your name and mailing address.



    You can read additional information about fibromyalgia and celiac disease on the National Library of Medicine’s Web site, MEDLINEplus, which has pages of resources about fibromyalgia and celiac disease at the following links:

    http://www.nlm.nih.gov/medlineplus/fibromyalgia.html and http://www.nlm.nih.gov/medlineplus/celiacdisease.html.



    MEDLINEplus also has encyclopedia entries on celiac disease at the following links: http://www.nlm.nih.gov/medlineplus/ency/article/000233.htm and http://www.nlm.nih.gov/medlineplus/ency/article/002194.htm.



    The lead Institute on celiac disease is the National Institute of Diabetes and Digestive Diseases and Kidney Diseases (NIDDK). You may contact them directly at:



    National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

    National Digestive Diseases Information Clearinghouse

    2 Information Way

    Bethesda, MD 20892-3570

    Phone: (301) 654-3810

    Toll-free Phone: (800) 891-5389

    E-mail: nddic@info.niddk.nih.gov

    Web site: www.niddk.nih.gov



    In addition, you may contact the following organizations for more information:



    American College of Rheumatology

    1800 Century Place, Suite 250

    Atlanta, GA 30345

    Phone: (404) 633-3777

    Toll-free Phone: (888) 644-6226

    Fax: (404) 633-1870

    Web site: www.rheumatology.org



    Arthritis Foundation

    1330 West Peachtree Street, Suite 100

    Atlanta, GA 30309

    Phone: (404) 872-7100

    Toll-free Phone: (800) 568-4045

    Web site: www.arthritis.org



    Fibromyalgia Network

    P. O. Box 31750

    Tucson, AZ 85751-1750

    Toll-free Phone: (800) 853-2929

    Web site: www.fmnetnews.com



    National Fibromyalgia Association
    2200 N. Glassell Street, Suite "A"
    Orange, CA 92865
    Phone: (714) 921-0150
    Web site: www.fmaware.org



    The National Fibromyalgia Partnership

    P.O. Box 160

    Linden, VA 22642-0160

    Toll-free Phone: (866) 725-4404

    Fax: (866) 666-2727

    E-mail: mail@fmpartnership.org

    Web site: www.fmpartnership.org



    We hope this information is helpful.



    Information Specialist

    NIAMS



    The enclosed (or attached) material provides general background information and is not intended to answer specific questions about a particular problem or condition. It should not be used for diagnostic or treatment purposes. You may wish to share some of the material with your doctor.

  11. bunnyfluff

    bunnyfluff Member

    I personally had chicken pox as an adult, which set off the Celiac's. The Celiac's went undiagnosed for 9 years and I just kept getting sicker and sicker and got so weak I was passing out, has to have transfusions, etc. My main symptom was chronic anemia. I did not have a blood test for Celaic, although I had blood tests for everything else- they figured I had bone marrow cancer, etc. I saw a GI, who dx'd it, and did endoscopy.

    Then came the pain of FMS after that- pretty quickly thereafter.

    I have been gluten-free since all of that.... it was 2001! My symptoms improved some, but not entirely, mostly managed thru meds, exercise, suppliments, etc., but it was a LONG road back to where I am today. I work full time now, I was bedridden then.

    However- I was just Dx'd with EBV shortly after I went back to work after a long leave of absence from a horrific flare and crash. Mind you, I was not feeling sick like "real" mono, what prompted me to go to the Dr was terrible pain in my upper left abdomen. My spleen was enlarged!! I do have some light sore throat and headache every day, but I just sort of push through it, and had contributed it to a mild winter here.

    My feeling is that food allergies are very underdiagnosed, and that many people with FMS/CFS have underlying sensitivities to many things. I have weeded many out on my own. Foods high in nickel send me into a migraine- like lettuce, soy, etc. I knew for years I couldn't wear nickel in my ears- never thought about food!!

    Don't know about the Nobel Prize, but hopefully some others will read this, and if we can save one more person some pain and suffering, then this board will have done it's job.
  12. patches25

    patches25 New Member

    I carry genes for celiac and have gone long periods without gluten. Gluten free helps my stomach acid problems but I don't feel that it has changed my body wide pain much. I wish it was the answer but for me it isn't. E.
  13. Adl123

    Adl123 New Member

    Hi,
    I was tested for Celiac disease, and all my Dr. told me was that I had tested negative. I should have asked him more, but when one has only 15 minutes, things have to be prioritized.

    I found out later that it is easy to have a false negative when one has the test, if one is already on a Celiac diet, which I was. So, I still really don't know. LOL

    Terry
  14. HAPPYDOGSUZ7777

    HAPPYDOGSUZ7777 New Member

    Aloha,
    I was tested with a celiac blood panel test and came back possitive. I have felt much better since being off any gluten which is wheat,barly,rye,or oats. There are a few other grains such as spelt that needs to be avoided. You can look up all the info you need online by looking on celiac disease sites.
  15. dancingstar

    dancingstar New Member

    I've had a blood test that supposedly came back negative, but I still don't eat wheat or really any starchy foods whatsoever. I just feel (and seem to look) better without them.

    Every now and then I'll eat a tiny bit of something that isn't on my personal homemade "approved" list and don't have any problem anymore, probably cause I really am negative and don't lapse for very long before getting back on track again.