Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

My Top 5 List
0

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. :)

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,351
    • Total Posts
      920,500
  • Topics

  • Posts

    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined