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My Top 5 List


Brrrandy

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Brrrandy Rookie

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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rosetapper23 Explorer

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!

Celiac.com 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.

Meetup.com 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!

Brrrandy Rookie

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?

rosetapper23 Explorer

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.

SilverSlipper Contributor

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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    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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