Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Top 5 List


Brrrandy

Recommended Posts

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. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

    2. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Have I got coeliac disease

    3. - Jmartes71 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Gluten tester

    4. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,150
    • Most Online (within 30 mins)
      7,748

    gingerc
    Newest Member
    gingerc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
    • Jmartes71
      I saw the thing for testing for gluten when at public places.I absolutely love but I wonder if they would come up with a bracelet or necklace that can detect gluten in the air.I would LOVE that, i know i get debilitating migraine from smelling gluten wheat what have you, all I know is when I go into places like Chevron- gluten Subway, migraine, Costco that food smell of nasty gluten- migraine and same with Walmart subway.I absolutely HATE im that sensitive, my body reacts.Sadly medical hasn't taken core issue of celiac being an issue considering glutenfree ever since 1994 and in their eyes not because they didn't diagnose me. I am and wish I wasn't. If there was a detector of gluten in the air it would make a world of difference. 
    • JudyLou
      Oops! @Staticgypsy, I’ll get the book! Thank you! 
    • JudyLou
      Thank you so much for your help, @trents and @Staticgypsy! I so appreciate your thoughts. My diet is high in foods with oxalates and I don’t notice any issues there. If eliminating gluten from my diet had changed anything I’d be happy to just keep on the gluten-free diet, but with eating gluten several times with no rash, and having a rash when I was many years into gluten-free eating (and was much more careful at that point), I’m just baffled. Many, many thanks to you both. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.