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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.

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My 8 year old daughter was diagnosed with celiac about 6 months ago. We have read a lot of information on diet and also have seen a dietitian. We are trying very hard to follow a gluten-free diet and it seems that she is feeling much better. The problem is the levels in her blood are still quit high. It was initially 130 and after 3 months on "gluten-free" diet it was 115. Now 6 months after starting this diet it is 99. Our doctor told us it should be below 20 very soon after gluten is removed from the diet. We are having a very hard time trying to figure out where the gluten is coming from. I don't believe she is cheating and I feel we are missing something. We are very frustrated and feel as though we are letting her down as her parents. Any help would be appreciated. Thanks, David and Patti

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I think you should talk with the doctor, possibly without your daughter there, and see if he/she is concerned that it's not below 20 by now. Is it possible that your daughters body is just healing slowly? If she's feeling well, and the numbers are going down, I would think that is proof enough that you are doing things right and that it's going well. It's scary, for sure, but just be sure that something really is "wrong" and that it's just not "slow". You aren't failing her, no matter what. 6 months is definitley not enough time to be an expert at this, you are all still learning. Start by keeping a food diary of EVERYTHING she eats, and read the labels of those items. Is she getting crumbs from someone else's sandwich? Does she go to a daycare, could she be getting something there even if it's a crumb here or there? Again, you aren't failing her. The companies who for some reason "refuse" to clearly label their products are letting us all down!

I definitely think, though, that the best place to start is a frank conversation with the doctor about whether to be concerned or not.

I hope this helps even just a little.

Bridget

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Are you fully aware of cross contamination issues? If you have any doubt, go here to look at things you should consider. Some might sound a little anal, but if her levels aren't going down, it's time to look at everything.

http://tinyurl.com/2jxtt

Do you all eat out a lot? If so, she's getting gluten at restaurants.

The only other way I can think that we could help is if you posted a pretty detailed list of what she eats. Maybe somebody would spot something.

You didn't say which test this is. Some go down more slowly than others, but I would say it definitely should be down more than this, especially in a child (they generally heal faster).

richard

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My son (age 10) was dx 7 months ago and reliably gluten-free (he was in the hospital on tube feeds!) 6 months ago. His orginial number for tTg was 157; in about 7 weeks it was down to 130 and a few weeks ago he re-tested at 35. I think your doctor is just plain wrong about how fast it should happen, but maybe you should post and see if anyone spots anything. Gluten turns up in just the stupid-est places!!

Joanna

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    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good     
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
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