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      • 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


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    1. nvsmom added a post in a topic Can I live?   

      Like the others said, you can ignore it but things will get worse.  They will.  Some symptoms may become permanent and you could develop life threatening conditions.  I developed ITP, which almost killed me and hashimoto's too. Those are with me forever. My hair thinned and never really came back thick again.  I had joint issues that have resulted in arthritis and soft tissue damage.  I can no longer be nearly as active as I would like to be. I feel older than I should.
      You could ignore but you WILL hurt your health and age yourself.  I wouldn't do it.  Eating gluten-free isn't horrible.  Meats, veggies, fruits, nuts, eggs, potatoes, rice, quinoa, flax and baking from gluten-free flours... Nothing bad there.  It takes a few months to get used to new brands and tastes, but it's worth it in the long run.
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    2. nvsmom added a post in a topic Anxious about Biocard test results   

      I know of one woman that happend to. A positive Biocard and a negative doctor test (both tTG IgA).  It appears that she had Lyme disease. A serious infection can sometimes cause a false positive tTG IgA test, as can diabetes T1, liver disease, hashimotos, crohn's, and colitis.  False positives are thought to happen only about 5% of the time though.
      I hear you about the waiting times. I'm in Alberta and the waiting time to see a Gastro about celiac disease was 9+ months, back when I was tested.  Who knows how much longer it would take for the endoscopy.  I chose to skip it.  I had a positive EMA IgA, tTG IgA, other autoimmune diseases, and celiac disease in cousins on both side of my family. Along with my symptoms, I had no doubt that it was celiac disease.
      Let us know how it goes!
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    3. nvsmom added a post in a topic Gluten and the thyroid and pancreas   

      I will also add that switching to a LCHF diet reduced my appetite and cravings for carbs, and I've lost about 30-35 lbs in 3 months, without much effort even though I am now at a normal BMI.
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    4. nvsmom added a post in a topic Gluten and the thyroid and pancreas   

      Hashimoto's thyroiditis and type 1 diabetes are the autoimmune diseases most commonly co-occurring with celiac disease.  
      I have hypothyroidism; my thyroid barely works.
      I also have prediabetes, so I make too much insulin and would often have some large blood sugar spikes.  I've fixed that problem by eating a low carb high fat diet.  If I don't eat the carbs, my glucose and insulin won't swing, I doubt this condition was related to my celiac disease though.
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    5. nvsmom added a post in a topic Celiac and Acne   

      Do you think it could be sugar related?  Many gluten-free products are higher in sugar...
      I recently cut sugar from my diet and was shocked at how my skin cleared up (it had become acne prone in the last 10 years).
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    6. nvsmom added a post in a topic New and Naive.   

      Chances of Hashi's causing a false positive ttG IgA is less than 5%. The tTG IgA (tissue transglutaminase) is very similar to the EMA IgA, but the EMA IgA tends to detect more advanced disease.  In fact, many doctors will not run the EMA IgA untila after a patient has had a positive tTG IgA.
      I have Hashi's too. My EMA was normal inside of a year gluten-free, although my tTg IgA took longer to become normal. After 3+ years gluten-free, my tests are all very normal.  
      It's probably celiac disease.  
      Welcome to our board. Good luck with the doctor.  Here's more info on the tests:
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    7. nvsmom added a post in a topic New Diagnosis Help   

      A positive tissue transglutaminase is never caused by non-celiac gluten sensitivity I'm afraid.  The tTG IgA and tTG IgG indicate that the intestines are being attacked and damaged by the immune system.  Although it is usually the tTG IgA that is positive rather than the tTG IgG, it is still a highly specific test for celiac disease - especially when it is a fairly elevated result and not just a weak positive (like a 21).
      Celiac is most commonly co-occurring with T1D and hypothyroidism.  With such a strong family history, I would have little doub that the positive result was from celiac disease.  Your child with NCGS should be retested for celiac disease if they are consuming any gluten.  Celiac can test negatively early in the disease and "change" into celiac disease as the disease progresses.  With celiac disease in the family, there is a good chance that NCGS is in fact celiac disease.  Your hubby and oldest son should be tested, and retested every 2 years from now on. Celiac can develop at anytime, and their risk of developing celiac disease has now jumped up to somewhere around 1 in 10 to 1 in 22.  
      Do not start a gluten-free diet yet.  They may want to do more testing, and a gluten-free diet will cause false negatives. 
      Here's some reading on the tests:
      Good luck with the gastro.  Let us know how it goes.
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    8. nvsmom added a post in a topic Autoimmunity and TTG   

      Yep, that's pretty positive. Five times above normal.  
      Ah yes, evil pumpkin spice latte....Well, on the bright side, it is often easier to stay away from risky cc situations when the symptoms are obvious.  I think it can be tough to stay gluten-free when you don't feel this disease.  KWIM?
      Hang in there.  You'll have the hang of this diet before Xmas rolls around.  Hopefully you'll be really noticing improvements by then too.  
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    9. nvsmom added a post in a topic Hyperprolactinemia As A Marker For Celiac?   

      Your deaminated gliadin IgA (DGP IgA) is the misfit.  Just remember that a positive is usually a positive for celiac disease. The DGP IgA is a good test.  I would trust it.  It sometimes catches people who were negative in the tTG tests - it's good for that.  One of our moderators had that experience. I'll see if I can send her this way.
      Don't make yourself too sick over the next few weeks.  The equivalent of 1-2 slices of bread per day should be enough.  Try saving it until later in the day if it wrecks your day.
      This is a good, if simplistic article about the DGP tests:
      Testing for IgA and IgG antibodies to unmodified gliadin proteins is no longer recommended because of the low sensitivity and specificity of these tests for celiac disease; however, recent studies have identified specific B-cell epitopes on the gliadin molecule that, when deamidated by the enzyme tTG, have increased sensitivity and specificity for celiac disease.(5,6) The tests for deamidated gliadin antibodies, IgA and IgG, replace the older gliadin antibody tests, which have been discontinued at Mayo Clinic. The sensitivity and specificity of DGLDN / Gliadin (Deamidated) Antibodies Evaluation, IgG and IgA, Serum for untreated, biopsy-proven celiac disease were comparable to test TSTGP / Tissue Transglutaminase (tTG) Antibodies, IgA and IgG Profile, Serum in a study conducted at Mayo Clinic.(5)
      Deamidated gliadin peptide (DGP) antibodies (anti-DGP), IgA or IgG — may be positive in some people with celiac disease who are negative for anti-tTG, especially children less than 2 years old. It may sometimes be ordered with or following an anti-tTG test, especially if anti-tTG is negative. DGP IgG testing along with anti-tTG IgG is recommended by the American College of Gastroenterology for people who have low IgA or IgA deficiency. If the anti-DGP test is positive, it may be used to monitor celiac disease. in there.
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    10. nvsmom added a post in a topic Anxious about Biocard test results   

      I did the Biocard test.  Mine was positive too although not as dark as your line.  I took my result to the doctor and he tested me too. He ran the exact same tests as the Biocard: the tTG IgA (tissue transglutaminase Immunoglobulin A) and the IgA serum (which is the control line).  My result was >200 with a normal range of 0-20.  I may have been 201 or 567, but it was very positive.  He then did the EMA IgA (endomysial antibodies) which confirmed the result with a positive titre.
      A positive biocard test is a positive tTG IgA test.  I'm afraid your first test should never have been dismissed. That doctor did you a grave disservice.    Chances are that you have celiac disease.
      I also had slightly low cortisol for no obvious reason beyond being worn down by untreated celiac disease.  I was on hydrocortisone and fludricortisone (for low blood pressure) for about a year.  The steroids did seem to raise my cortisol (it's no longer low) but it helped with weight gain and I became prediabetic while on them (steroids can cause insulin resistance).
      Also, be aware that steroid use can cause falsely negative celiac disease tests.  I think going gluten-free no matter what the tests say is a good idea for you.
      The gluten-free diet can take many months or a few years to heal you.  Be patient once you go gluten-free.  I had lupus symptoms which I had a hard time believing were caused by celiac disease because I was still getting them a good year after going gluten-free.  The symptoms eventually left, but it took a couple of years.
      Let us know how it goes with the doctor!
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    11. nvsmom added a post in a topic Autoimmunity and TTG   

      Yeah...   Usually false positive are pretty weak.
      I have celiac disease, Hashi's, and ITP (and I still suspect MCTD or something similar).  My ttG IgA took over a year to get back into normal, and then it was still a high normal for another year. My Hashi's might have kept it up a bit, and even now it is about a 5 out of 14 - still not super low.
      You'll find many of us have multiple issues that slows recovery somewhat.  You're in good company. 
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    12. nvsmom added a post in a topic Hyperprolactinemia As A Marker For Celiac?   

      If you had an abnormal test, it is probably celiac disease.  Not many celiacs are positive on all tests.  I would put them in the minority.
      So which test was positive?  A tissue transglutaminase, endomysial antibody, or demaninated gliadin peptide positive is pretty much a sure thing.
      So, just another week or two of gluten?  Good.  Make sure they take at LEAST 6 samples.  Anything less than that is not enough and will increase the odds that the damage is missed, which happens to 1 out of 5 celiacs.
      Remember that a negative biopsy does not discount a postive celiac disease test. It just doesn't support the diagnosis.
      And (hugs) to you.  I remember getting all negative results from my rheumy (after I had been gluten-free for 9 months) and crying because I wanted an aswer. It turns out that the gluten-free diet was the answer, but it took close to two years for everything to get better, and I still get the occassional symptom.
      Good luck. 
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    13. nvsmom added a post in a topic I Want To Get Tested   

    14. nvsmom added a post in a topic Test Results, Not Convinced...   

      I would just say you have celiac disease, but it was caught in the early stages. A gluten sensitivity NEVER causes damage unless it is celiac disease.
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    15. nvsmom added a post in a topic Autoimmunity and TTG   

      I doubt it too. 95% of the time a positive ttG IgA is caused by celiac disease. The other 5% of the time, a weak positive is caused by hashimoto's, liver disease, diabetes, crohn's, colitis, or a serious infection.  I would say you probably have celiac disease.  
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