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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

My Top 5 List

5 posts in this topic

I'm in year one of being off gluten, and I thought I'd list out the top 5 most helpful things to me during this time. For many of us, getting off gluten is just the beginning of the journey. There can be many corresponding health problems or lingering deficiencies that tag along for a while. These are the things (besides just not eating gluten) that have helped me cope and recover.

Feel free to post your top 5 (or 10!) and share your knowledge and experience.

Anxiety- Running, and a good pair of running shoes.

I know, I know. I'm a bit dim-witted if I think anything I say will convince anyone who's not running to run. But seriously, I started to get that weird excess energy feeling, and felt like I needed to take off running, so one day I did, and it's only gotten better since.

Major symptoms- Elimination diet and a corresponding recipe book

Look it up and do it. Enough said! A good recipe book helps a lot when you're clueless.

Recovering nutritionally- Metagenics Ultra Meal Rice, Fish Oil, Probiotics, enzymes, and Vitamin D

My nutritionist/acupuncturist/chiropractor put me on this stuff a little while after the elimination diet. It's an expensive regimen. The Ultrameal alone is $35 and lasts just short of a month if you use it every day, but even when I can barely afford rent, I buy this. That's how much I love it. I truly feel this is one of the top things I do for my health, and it actually tastes awesome too. The other supplements are the cherry on top, but in the beginning, they were crucial. I'm not big on supplements, but I can't deny the effect of high quality goods. I credit them with my 180 degree turn around in less than a month.

Migraines- Acupuncture

I'm pretty sure it was the acupuncture that stopped my migraines.

Insight, knowledge and support- The UltraMind Solution by Dr. Mark Hymen

Totally dumb name for a book, but for anyone having brain fog, anxiety, depression, or other related mood/mind things, this book is a very interesting and informative read. It completely revolutionized the way I think about health.

Lack of support/feeling alone- Crying about it

For a while I tried to play things off and be cool, but when I came home to visit my parents after a particularly hard week of having to eat out for business trips, and they offered to take me out to dinner, I broke down and cried. Even though I'd said it, they didn't realize how tough it was for me to swallow fears every time I went out to eat. I spilled my guts about how sick it really made me, and how hard it was for me socially to feel like a princess for being so "picky" after years of gastrointestinal nonchalance. It inspired them to educate themselves and have food ready when I visit.

Everything under the sun- my amazing doctor

There is something to be said for searching and searching until you find someone to help you. My doctor is a combo acupuncturist/nutritionist/chiropractic neurology specialist. He listens, believes me, and more than anything else, provides results. Don't settle for another doctor who will do nothing.

Ok, so I did seven. :)


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What a positive topic! Thanks for posting your top 5, 10, whatever--very enlightening.

I have to agree--Metagenics has wonderful products! Their Ultraclear product brought me back to health.

The doctor who prescribed the Metagenics regimen is also on my list--he's an integrated medicine doctor (has an M.D. in Internal Medicine but practices homeopathic, too). He listened and told me, "I'm going to make you feel as though you don't even have celiac," and then he did it! makes my list, too, because its members have helped me so much. I thought I knew everything there was to know about celiac and DH....but I was wrong. celiac members gave me support and a social outlet for meeting other celiacs and people with gluten sensitivity. I've made lots of new friends and been introduced to safe, gluten-free restaurants.

I've returned to running, too! You're not alone in that--it's wonderful to feel strong enough to run again. The last time I was seriously glutened in April 2010, both of my feet fractured from tendons that became "loose" from nutritional deficiencies, so I only began running again a few months ago. Feels like Heaven!

I love the Gluten Intolerance Group of North America (GIGNA)! They're a fantastic group of people whose priority it is to educate everyone on celiac and related issues, they have a great training program for restaurants. and they're responsible for certifying gluten-free products. I'm thankful for them every day!

Okay, everyone, now it's your turn!


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Thanks for your reply, Rosetapper. Metagenics to the rescue! My doctor actually put me on UltraMeal before I pin pointed the gluten issue. I wonder if I should try UltraClear or UltraClear Sustain? They're more specialized for GI issues, right?


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Yes, it was Ultraclear Sustain that I put in my smoothies for about 18 months--I never felt better! If you end up trying it, you only need to add one scoop, rather than two, and it'll last twice as long. This is one of the best products on the market for celiacs.


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My daughter is the one with Celiac (although I did have some emotional moments at first trying to figure out what to cook!).

Top thing for us would be the support of family and friends. When my daughter first received the diagnosis, I literally cried. I wasn't scared of a serious condition, I was upset that my whole way of cooking, shopping, etc was changing and I didn't know what to do. My daughter's best friend's mother went shopping and bought several box mixes of gluten free items and brought them over. She also bought a duplicate set to keep at their house and invited my daughter over to spend the night. They ALL ate gluten free when she visited. It's that type of kindness that makes me want to be kind to everyone on the planet because it was so unexpected.

Exercise - she loves to be outside and active. I love seeing her running around and healthy.

New gluten free items - she loves to find new gluten-free things. Her latest is ice cream cones.

gluten-free camps - God bless them. The camp experience with gluten-free food thrills her.


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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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