• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com 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 Celiac.com Store.

Celebrating One Year gluten-free! Better Results Than I'd Ever Dreamed!
0

9 posts in this topic

I wrote this with my Facebook friends in mind. But realized it's WAAAAAAAY too long! So posting a slightly edited version here. And will have to figure out how to shorten it for FB. Second paragraph is all the improvements I never dreamed would happen.

"Today I celebrate one year of being gluten free. No, I’m not celebrating my extremely restrictive diet because quite frankly, it sucks. I’m celebrating feeling good for the first time in years. Knowing what I know now, I think that celiac has been quietly working in the background for at least 15 years causing my immune system to attack my GI tract, nerves, and brain. I’m putting the next part out there in case anyone recognizes themselves or someone they know.

I didn’t realize just how far downhill I had gone until my brain kicked back into gear. It slowly started at 8 months gluten free, but my brain’s processing speed really came back on my birthday weekend. Like a phoenix rising out of the ashes. I spent about a week with a surreal feeling of having ADHD until I realized what was happening. Over the last few years, I had been having a harder time with expressing myself and processing what others were saying. My thinking was slowing down. My memory was getting worse. I was getting more distracted. I had a hard time engaging with people. All that changed in a week. I had had troubles with increasing anxiety - driving, storms, social situations, making the wrong decision, etc. My anxieties left. I was becoming more and more irrationally irritable. Gone. I felt joy for the first time in longer than I can remember. I rarely listened to music despite my musical background. Now I listen to it all the time. I was becoming more reclusive, disengaged, and lethargic. That has definitely changed.

Physically, I’m left with multiple food intolerances [dairy, fructose, brown rice, teff, sorghum, quinoa, grapes, tomatoes]. I had had constant stomach pain and other problems [gas, bloating, C -these details not going on FB!!] until I eliminated a TON of food from my diet. I’m hoping this will improve over the next year. I had had 3 years of continual muscle or nerve pain/tingling. My muscles are close to normal now. My nerves still have a little bit more to go. Not sure I’ll ever have a month of no tingling anywhere in my body, but I’m hopeful. The cystic acne I fought for 27 years is gone. (Nice surprise!) Strangely, I had a toenail that didn’t grow correctly for 10 years. It’s now growing healthy nail.

So if you’re experiencing some weird symptoms, keep digging until you find your answer. It took several years and 6 doctors before the 7th one told me emphatically to go gluten free. So glad I listened to him!"

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Awesome and congratulations!!! I too am coming up on one year, next month.

You say your nerves have a bit more to go in your post. Can you explain that? Are you having nueropathy issues not linked to anything else and what have you done for it? The reason I ask is I want to make sure my nueropathy is not due to something else and I have docs rather puzzled. I just had blood work today to test for rhuematory arthritis, lymne disease, lupis, and I have an appt with nuerology next week, doc wants them to test me for MS.

0

Share this post


Link to post
Share on other sites

Awesome! For someone starting out it helps so much to hear of your success with gluten free. Congratulations!

I wrote this with my Facebook friends in mind. But realized it's WAAAAAAAY too long! So posting a slightly edited version here. And will have to figure out how to shorten it for FB. Second paragraph is all the improvements I never dreamed would happen.

"Today I celebrate one year of being gluten free. No, I

0

Share this post


Link to post
Share on other sites

Awesome and congratulations!!! I too am coming up on one year, next month.

You say your nerves have a bit more to go in your post. Can you explain that? Are you having nueropathy issues not linked to anything else and what have you done for it? The reason I ask is I want to make sure my nueropathy is not due to something else and I have docs rather puzzled. I just had blood work today to test for rhuematory arthritis, lymne disease, lupis, and I have an appt with nuerology next week, doc wants them to test me for MS.

My nerves get pinched easily. (Far, far less than before.) So before gluten free, I had carpal tunnel release surgery on both wrists. Yet the tingling came back, and it came back in my entire hand. I did a gluten challenge for 4 days after two months gluten free. My leg tingled from toes up to my rear end for a few days. Then, I was getting stabbing nerve pain in my heel and would have tingling in my legs off and on. I had to stop going barefoot and wear shoes with cushioning in them. I would get tingling in various places in my head if I leaned on my neck too long on the sofa.

My hands and arms are much better. I have to really overdo it with texting or surfing on my phone before tingling sets in. My legs survived wearing heels one evening and then 4 days of tons of walking around. I only had a slight bit of tingling and a little bit of muscle twitching. My neurologist believes I'll get better over the next six months. We'll see!

0

Share this post


Link to post
Share on other sites

Awesome! For someone starting out it helps so much to hear of your success with gluten free. Congratulations!

Thanks! Encouragement is exactly why I posted this. :)

0

Share this post


Link to post
Share on other sites
Ads by Google:


My nerves get pinched easily. (Far, far less than before.) So before gluten free, I had carpal tunnel release surgery on both wrists. Yet the tingling came back, and it came back in my entire hand. I did a gluten challenge for 4 days after two months gluten free. My leg tingled from toes up to my rear end for a few days. Then, I was getting stabbing nerve pain in my heel and would have tingling in my legs off and on. I had to stop going barefoot and wear shoes with cushioning in them. I would get tingling in various places in my head if I leaned on my neck too long on the sofa.

My hands and arms are much better. I have to really overdo it with texting or surfing on my phone before tingling sets in. My legs survived wearing heels one evening and then 4 days of tons of walking around. I only had a slight bit of tingling and a little bit of muscle twitching. My neurologist believes I'll get better over the next six months. We'll see!

Did you go on any meds or use any vits to help with the tingling and flinching? I see a nuerologist next week.

0

Share this post


Link to post
Share on other sites

Did you go on any meds or use any vits to help with the tingling and flinching? I see a nuerologist next week.

Just a multivitamin. I wasn't low in B12, which is a common culprit. (And my neurologist is one who will recommend supplementing if someone is on the low end of the normal range for B12.) There is evidence that the immune system will attack the nervous system directly, so not all nervous system problems for people with celiac are caused by malabsorption of nutrients. Some problems are though, so it's good to get your levels checked out.

0

Share this post


Link to post
Share on other sites

sreese68,

Thank you for the inspiring post!! So great to read something uplifting!

I'm happy for you :)

0

Share this post


Link to post
Share on other sites

Congrats on one year! I'm a little bit behind you in the timeline, but a large portion of what you wrote was if I was writing describing myself (I can now just show people your post...see I'm not the only one). Great explanation / description. Thanks for posting. Cheers!

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
      106,783
    • Total Posts
      932,393
  • Member Statistics

    • Total Members
      64,259
    • Most Online
      3,093

    Newest Member
    BFerris
    Joined
  • Popular Now

  • Topics

  • Posts

    • Does he run a lot? On hard ground? My ferritin started at 74 and is now 20. My rbc count was normal but showed mild anemia after an 18 hour fast.   I initially also thought it might be due to malabsorption, and it may be, although my gut doesn't show a ton of damage. Coincidentally I started running around  all of this, with A 6 month break in between, and have also recently read that Runners Who log a lot of miles generally are pretty low on ferritin if they don't supplement.  I only do between 6-15 Miles per week.  I eAt a mixed green salad about 5 times a week, red meat a couple times a week, and then a lot of other high iron foods.  lamb stew is a tremendous source of iron, as well as mussels. I am a big fan of garden lights chocolate zucchini muffins as well each mini muffin contains 20% of the daily value.  I Like to eat Two for breakfast with my coffee.  if he stopped eating gluten about a month ago you might still be able to get the blood test done. I'm sure you have read by now that you need to be eating gluten to be tested.  antibody start falling Right away but for some people it takes a long time.   I'm not a doctor but I would think that if you have enough damage to mal absorb iron then it would take a lot longer than just 4 weeks for you to  fix that kind of damage And reabsorb it again.    did they order a total iron binding capacity?  and was the iron panel done while fasting? You don't really need to fast for a ferritin but serum Iron can easily be elevated With food.  Although symptoms vary depending on the individual I have read quite a bit online that When ferritin drops below 40 people can start getting symptomaTic.  so you are likely correct that his feeling better is related to his ferritin level increasing.  giving up gluten means giving up certain nutrients as well. So if he's already vegetarian he needs to really pay close attention to what nutrients he might be missing in his diet now if he's giving up whole grains.  
    • Thank you! I will look into it! 
    • You would honestly think that after you body goes nuts attacking your insides trying to kill the gluten after 2 days of food poisoning yourself with it the damn antibodies would show up in insane levels in your blood Life is not that easy though.
    • Some days I have 3 pieces of bread, other days I just can't handle more than 1.  I had to take a day of gluten rest after the first week.  I felt too aweful. Now I'm almost done with week 2 and I feel like I need another break.  Just so hard to do something to yourself that you know will hurt.  They just don't know how much and for how long.  There was a recent study that looked at gluten challenges in folks actually diagnosed with celiac and some took months to have elevated antibodies.   Just one day at a time.  I hope things go well for you. 
    • Thank you for replying. I think you are right- why take the chance of reinfecting myself with gluten exposure again when ive been trying so hard to rid it from my life?  I just read some interesting articles on Sjogrens Syndrome and gluten sensitivity and that they are related so that may answer one of my questions. Your symptoms took over a year to resolve?! Holy moly.. I fear that is going to be my issue too. Are you feeling better now?  
  • Upcoming Events