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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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity

Testing Post Diagnosis

3 posts in this topic

I read on the University of Chicago website about what you should be tested for each year after diagnosis. My doctor isn't very knowledgeable on Celiac, and I am coming up on 2 years since diagnosis. At my last appointment (which was the first since diagnosis), I asked her to run the testing again to see if my numbers look good. She ran a "Celiac Panel" (all the lab slip said), and when they called me with the results, they said it was negative and to keep doing what I'm doing. I don't have the report in hand yet, but I wanted to see if anyone knows if this is good news . . . or really no indicator?


I have been gluten-free for almost 2 years, but my family (husband and 5 kids) still consumes some gluten in the house. I am always worried about CC or the goldfish kisses from my kids!!! We eat out a few times a month, and, well, you can never be sure there!!! I just wanted to make sure I was definitely on the right track and healing.




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Request a copy of your results. But chances are your Celiac Panel being "negative" is good. The doctor that diagnosed me used a "Celiac Panel" and since I've gone gluten free my numbers have gone down but are not considered in the normal range yet. Chances are you may be in the subclinical range and that is why they said negative. But get a copy of your results, too. You should compare your initial test results with the new results. It will be a great confidence booster for sticking with the diet!


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Yes, this is good news.  All of your antibodies should be negative if you have been gluten free for two years.


It is advised to have the celiac panel run at six months and then annually there after.  Since this panel was negative there is nothing more to do other than remain gluten-free and include the panel in your annual blood work.


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    • New to Celiac!
      I had a few meltdowns in the grocery store at first, walking out empty handed. Of course I lived on junk food before going gluten-free and the idea of eating plain whole foods seemed foreign to me. I'm not much of a cook! Definitely, eating out is the hardest part. Being spontaneous is going to have to be a thing of the past. While I always carry non-perishable gluten-free food in my purse for those "just in case" times, it's hard to carry a whole meal. (Lara bars are good but not THAT filling.) That means planning ahead. If you either eat before you go, after you go, or even bring food to eat while there, you pretty much need to know you ARE going ahead of time. So I keep the freezer full of individual meals that can be thawed or cooked in the microwave at a moment's notice. That can mean a one bowl meat/rice/veggie dish, some Against the Grain frozen pizza, or even a sandwich on gluten-free bread. Depending on where you live there might actually be a safe restaurant or two in your area. Of course unless they are a totally gluten-free facility there is always a chance of getting glutened no matter how safe their practices are. I think I just read here the other day about someone finding a crouton in the bottom of their salad bowl. Mostly it doesn't happen but there aren't too many of us who haven't been glutened at a "safe" restaurant at least once. Also, I have seen that some folks have trouble talking their friends into eating at only those places that have gluten-free menus and safe practices. That's why not only do you need to educate your family, but your friends too. If they care about you they will listen, learn about, and heed your need for safe gluten-free foods. Another thing to think about - if you're out shopping with your friends and it takes longer than anticipated, instead of relying on a Lara bar or two, there is usually a grocery store nearby. You can run in and pick up something there. Fresh fruit, certain cold cuts, a pre-made salad (as long as there are no croutons), even a bag of Lay's potato chips. Once you've become experienced at reading labels you can be assured of eating safely. Kraft products and Con-Agra (and a few others) will ALWAYS list any gluten ingredients on their labels. Those are big parent companies that have many many brands under their names. It will take you a while but before you know it, all this will become second nature to you. I promise.
    • Pie Crust Recipes
      Hello there. I made an entire recipe book with all kinds of gluten free fool proof recipes. I usualy use coconut flour from Bob's Red Mill. I find it works the best. Also, you can use regular all purpose flour. 2 cups of flour, 1/2 tsp salt, 8 Tb butter (chilled), 1 large egg (lightly beaten), 8-10 Tb ICED water.
    • Restless Legs Syndrom (rls)
      RLS is significantly more prevalent among the celiac population than the general population, so I think there's definitely a correlation. Unfortunately, it doesn't aways go away once you go gluten free. There's also a link between RLS and inflammation, and, for me at least, most of my post-glutening symptoms can be linked back to generalized inflammation.  For me, RLS is one of the first indications for me that I've been glutened (right after arthritis/muscle aches and dry mouth), though it's more of a "restless body syndrome" since it doesn't confine itself to my legs. I'm fortunate that it goes away as long as I'm gluten-free, I know many people aren't so lucky. This last time (currently recovering from being glutened at Thanksgiving *sigh*) I ended up getting up and playing video games till 4 in the morning. In retrospect, I probably could have used that time to do dishes or something more productive... Only thing that ever works for me is to get up and move around and stretch as much as possible, I've been known to do some 2 am yoga, I know my dad used to go for walks around the neighborhood. Don't resist it, don't lay in bed and try to stay still, I really think that's the worst thing you can do. Get up and use your muscles and tire them out and hopefully that will help. If you have flexibility in where you have to be and when the next day, you can always try to do productive things and then sleep in once things have calmed down. Otherwise, caffeinate the next day and hope the next night will be better.
    • New to Celiac!
      There is a grieving period, especially around the social impact and this is completely normal. To get your family to understand, the best thing you can do is point them at some reputable online sources for information. As you implement your gluten-free diet you will make mistakes and get sick. Just pick up and keep going. You will likely notice your reactions getting much worse with accidental exposure the longer you are gluten-free. I would recommend getting some follow up testing like a vitamin panel and a bone density scan. It's also common to have thyroid issues, so you may want that checked as well. It takes time to get used to, but it's doable. I would recommend investing in a foodsaver. It's been a God send for bringing meals on the go. 
    • Celiac Night Vision
      Hi PCB, You sure have a mystery symptom there.  Some other things that might change with the seasons, perhaps switching from drinking tea to coffee, or maybe eating less soup in warm months? Since your symptoms vary with the seasons it sure seems like they could be related to allergies.  I think if you read up on birch allergy you'll find that some people with birch allergy also react to celery.  Often enough it's not just one plant species that causes allergic reactions but a family of related plants. The numbness in your toes is another clue, of what I am not sure though.  I assume your blood sugar is ok.  I knew a fella with high blood pressure that had tunnel vision sometimes but that's different also. How about trying an anti-histamine next time the scotoma occurs to see if it causes any  improvement?  If it results in an improvement in symptoms that might mean the cause is an allergic reaction. Some other things to consider are possible low thyroid and selenium. Myself I don't eat nightshades or soy or dairy.  And I don't have any scotomas at night.  I am also low carb and mostly paleo.  For some reason the hair on top of my head is getting a little thin though.  Can't win 'em all as they say.
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