Get email alerts Get E-mail Alerts  

  • Articles  ||  Forum Home  ||  Gluten-Free Mall  ||  Store  ||  Journal of Gluten Sensitivity

  • Ads by Google:

    • Announcements

      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


    Advanced Members
    • Content count

    • Joined

    • Last visited

    Community Reputation

    0 Neutral

    About Slr38

    • Rank
      Community Member

    Profile Information

    • Gender Female

    Slr38's Activity

    1. Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Finally Got A Diagnosis....and It Is Not Celiac Disease!
      Hello Everyone,

      I was on this forum a lot in the fall trying to figure out the terrible symptoms I had been dealing with over the last 20 years or so.

      Like many of you I had been tested for so many different diseases and had some pretty awful doctors visits. I had so many of the celiac disease symptoms and was certain that is what I had.

      I finally decided to visit a Naturopathic Doctor since I was fed up with the mainstream medical system. She took the time to listen to ALL of my symptoms and said "Lyme Disease, I am certain it is Lyme Disease". I never had a tell tale bulls eye rash or remember a tick bite. Turns out that most of Lyme Disease sufferers never did either. I had the blood test (sent to the USA) and it came back positive. I can't believe I finally have a positive diagnosis.

      I just wanted to share my story and thank all of you on this board that were a great source of support and help to me!

      Good luck to all of you on your journey.
      • 3 replies
    2. Slr38 added a post in a topic Positive Home Test, Negative Lab Test - Manufacturer's Response   

      The only tests that I had were Tissue Transgluaminase Iga and Immunoglobulin A. I was under the impression that they were going to do the whole panel. Apparently the labs here in Calgary only run the other tests if the TTg Iga come back positive. This really does not make sense to me! I would think that they would especially run the other tests if the first was negative.

      Thanks for your advice!

      I will see if the Naturopathic doctor says.
      • 0
    3. Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Positive Home Test, Negative Lab Test - Manufacturer's Response
      Hello Everyone,

      A few weeks ago I received a positive result from a Biocard home celiac test. I then received a negative lab result (they only ran one test). I emailed the company to ask them about the different results. This is the response I received:

      In clinical studies in the EU where the Biocard has been used and there has been a discrepancy between the equivalent Elisa lab test and the Biocard (Biocard “+” and Labe “-“), over time the “-“ lab tests become “+”. This has been explained by the sensitivity, specificity and cut-off limit of the Biocard relative to lab testing. The cutoff for the Biocard is 5u (international units). Many laboratory tests are between 10 and 20u.

      So should I wait to see if I eventually get a positive blood test? Will my doctor even consider retesting? Should I just go ahead and try a gluten free diet?

      I have an appointment with a Naturopathic Doctor next week. I'll see what she has to say.

      Thanks for listening.
      • 5 replies
    4. Slr38 added a post in a topic Negative Bloodwork   

      Hello again,

      I just looked up the Celiac tests on the lab website and this is what it says:

      "Initial test of Celiac Disease Screen includes TTG and IgA. Additional reflexive assays will be ordered as required and may include Anti-Endomysial Antibodies (AENDAB) and TTG IgG. "

      I guess since my TTG Iga was normal they did not go ahead with the other tests. Does this make sense? I thought if you tested negative for one test you could still test positive for other tests. Am I wrong?

      Thanks again.

      • 0
    5. Slr38 added a post in a topic Negative Bloodwork   

      I typed a long reply but it does not seem to be here?!

      So, to make a long story short;

      I emailed 2gpharmas to inquire about my results. They have now sent my questions to the manufacturer. I will let you know what they say.

      The resident did not have much to say and had never heard of the home test. He only said that the test I had was all that was needed.

      I too thought I would have a positive result. Very frustrating indeed!

      I am not sure what my next step is. I am considering visiting a Naturopathic dr. and see what she has to stay. The initial visit is an hour so we should be able to cover a lot.

      My quest continues...
      • 0
    6. Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Negative Bloodwork
      So after almost two weeks of waiting I finally got my results back.

      Turns out they only did the screening for TTG Iga!

      Here is what the report says:

      Tissue Transgluaminase Iga 1.1 kU/L Ref. Range 0.0 - 20.0
      Immunoglobulin A 1.78 g/L Ref. Range 0.60 - 4.20

      I saw a Resident as my family doctor was away. He said I did not have Celiac Disease. I asked him if I was not supposed to have more tests done and he said no, this was the only one needed. I know there are more tests to be done but if he says no, what do I do now? I think the lab only runs the other tests if the TTG Iga is higher.

      The test screening info section on this site is down for maintenance so I could not look anything up.

      Thanks in advance for your input.
      • 4 replies
    7. Slr38 added a post in a topic Yankee Stadium   

      I just wish I was at Yankee Stadium, food or no food!
      • 0
    8. Slr38 added a post in a topic Lactose   

      Thank you for your quick reply!
      • 0
    9. Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Hello Everyone,

      Lactose seems to be giving me a lot of trouble lately. I had my blood work for Celiac Disease this morning and will find out next week if it is positive or not and if I will require an endoscopy. I know I have to stay on gluten but is there any reason at all to continue on Lactose?

      Thank you for your advice!
      • 2 replies
    10. Slr38 added a topic in Celiac Disease - Pre-Diagnosis, Testing & Symptoms   

      Blood Work Tomorrow
      Hello Everyone,

      I had an appointment with my doctor today. I told her that I had not started the antibiotics for Lyme Disease because I believe I could have Celiac Disease. I told her my symptoms (again) and how they are also symptoms of Celiac Disease. I told her that I had taken the home celiac test and received a very faint positive result. She was not familiar with this test so I showed her the "Dear Doctor" letter supplied with the test. I don't think she was totally on board but she said testing would not hurt so I have my requisition for blood work for the Celiac Panel. She did not feel the need to retest my vitamin and mineral levels because she said they were "fine". She said very casually "Maybe its cancer." and added Calcium and LDH to my requisition! Let's hope it is Celiac disease she said. The doctor also mentioned that if the blood work does come back positive, they would only give me the diagnosis of celiac disease with a positive Endoscopy result.

      So I am off to get blood tests tomorrow.
      • 4 replies
    11. Slr38 added a post in a topic What Do You Miss The Most?   

    12. Slr38 added a post in a topic We Need To Start A Thread On Stupid Stuff Doctors Say!   

      Thank you both for your replies, they were very helpful. I will be sure to have a list of symptoms with me. There is also a letter for the doctor that the Biocard people supply if you get a positive result.

      I will be brave!

      • 0
    13. Slr38 added a post in a topic What Do You Miss The Most?   

      Oh no! I think I will be gaining a few pounds in the next couple of weeks!

      I did not even think of the rye bread...

      I wonder if my mom could ( and would) make her German Christmas Stollen with a different flour.

      Are any gluten-free beers any good?

      No gluten in red wine, right? RIGHT?!
      • 0
    14. Slr38 added a post in a topic Home Test   

      Hi Nicole,

      Thanks for your suggestions. I actually put that book on hold for me at the library. It should be there by tomorrow. I will see what else I can find too.

      I will also check out Planet Organic tomorrow when my eldest is in kindergarten. PO is two minutes away and I have never been inside! I read that Amaranth has a Celiac registry and will keep track of all gluten-free purchases and will give you a print out at the end of the year for tax purposes.

      I was at Home Sense today and they had a gluten-free Baking Cookbook, maybe I should go back and get it.

      Our pediatrician is great (I think even more so now after reading some posts on this forum). He tests all of his patients from the age of two regardless of if they have symptoms or not. If I do have celiac disease I will be sure to tell him so he can retest my boys in the future.

      I would love to meet up some time! I will need a coach ( or would we call them sponsors? lol). Can we send PMs on this forum?

      Oh and my husband is away for the week hence the boredom and constant Googling.
      • 0
    15. Slr38 added a post in a topic We Need To Start A Thread On Stupid Stuff Doctors Say!   

      Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.
      • 0

    Ads by Google: