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

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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.

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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

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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!

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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. :)

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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.

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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.

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sreese68,

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

I'm happy for you :)

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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!

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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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