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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Ttg Down To Normal After Only 4 Months Gluten Free?
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Hi!  Hope someone can help me with my blood test results. I've been gluten free 4 months and I had my (tTG) IgA checked to see how it was going.  4 months ago it was 94 (above 10 was positive).  Now it is 3 (0-3 is negative).  Is it even possible that my score has gone down that much? I though it would have gone down by half at the most.

The reason that I'm skeptical is that my son had a low positive at this lab before he was diagnosed (a 4, a weak positive according to their scale).  Our pediatrician had it checked again at a different lab and the score came back 51 (which was a much higher positive.  The doctor was shocked that there was such a difference between the two scores, and thought it really shouldn't be possible, but we kinda shrugged it off, and the kids are going to the other lab.  My doctor wanted me to stick with lab for now so the results would be comparable, but I really am skeptical I could go down that much.

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It is very possible for numbers to go down that much.  It all depends on how strict you are with the diet, how long you were symptomatic or suspected a problem, and how fast a healer you are.  There are many variables and that's why it's almost impossible to compare your results to other peoples results.  Were you very symptomatic before start of the diet and have you noticed improvements?  It looks to me like you have done a really good job with the diet!

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It hard to say how long I had it before diagnosis. About 6 months before I started having itchy eczema in my scalp that began to spread all over my body, my tongue was very sore and irritated, and my iron dropped very low. I also started to have hair fall out.  I was reading an article about the low iron and it mentioned celiac disease as a possible cause, and I remembered my dad had been diagnosed shortly before he died, so I went and got the test. I've had low iron and tongue problems for years (doctor said it was geographic tongue) just during pregnancy though.  Those symptoms are both more frequent during pregnancy, and they went away when I wasn't pregnant.  So it's possible that I had problems before 6 months ago, but 6 months ago is when the symptoms got really bad.  I've been careful on the diet, no cheating, but I still go out to eat and I have thought at times there was some cross contamination symptoms (my eczema flared up)  My symptoms have improved, but the eczema isn't gone on my scalp, and I'm not sure if I'm still losing hair (but some has grown back too). Things are much better, but I hoped all my symptoms would be gone when my (TtG) IGA was normal.  (My iron is up too, BTW, though it still on the low normal side.)  I had my TSH checked to make sure it wasn't a Thyroid problem but that came back normal too.

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It takes a lot longer for symptoms to disappear after your blood work becomes normal.  That is the norm for most Celiacs.  My blood work was normal at the 1 year mark but it took 3 years for all of my symptoms to go away and my nutritional deficiencies to get better.  It's a long process.  Usually people that have skin issues from Celiac notice a longish recovery as it takes awhile for skin lesions to heal and not come back.  It took a long while for you to get bad and it will take a long while to get better.  It 's more like a slow, steady recovery that most people experience.

 

The tongue problem.....I had that also and it goes with Celiac.  It's one of those funky symptoms most doctors miss entirely.  It may have gone away when you were pregnant because pregnancy is an immuno-suppressant and when your immune system is suppressed, even a little, it suppresses symptoms.  You feel better but things come back with a vengeance post delivery.  That will go away with time.

 

You may want to prod your doctor to have a full thyroid panel done as just testing the TSH is not good enough.  You really need to be testing the 2 thyroid hormone levels, T3 and T4.

It's also helpful to test thyroid antibodies but many doctors skip that and just test the TSH to save money.  Bad idea because you can be positive on some of the tests and not on the others, not to mention that the TSH is a pituitary test and not a thyroid test.  Each test is valuable because it's testing certain aspects of thyroid function.  Thyroid disease is huge with Celiac....I have Hashimoto's myself.

 

Be careful with the diet and watch the number of times you eat out until healing is well under way.  Not that you can't go out but pick restaurants wisely and try to limit the times you do go out because it is a risk every time you do so.  But if you have been feeling better overall and your iron levels are coming up, I'd say you are doing a good job.

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    •   Thank you, this does feel helpful and reassuring. Did you end up getting blood tests again after going gluten-free? Do you have to worry about cross contamination as much as with a celiac diagnosis?  How do you explain it to friends and family? Non-Celiac gluten sensitivity sounds so vague and I know it's dumb, but I worry about people not taking me seriously.        
    • Helen, a woman with severe lifelong eczema/dermatitis, wrote to me a few weeks ago, saying "I have taken your advice and been strictly gluten free for five months now. The eczema inflammation is 99% gone and my skin quality has significantly improved. I do still get a bit itchy around my neck area and elbow creases, more so at night when it is warm. I have noticed a significant improvement in my asthma also. I still use antihistamines perhaps once or twice a week for runny nose. Does this mean I will need to be gluten free for life? Which of your books would you say would be the most relevant for someone in my position? Thank you for your assistance, regards, Helen. View the full article
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