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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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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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